Living with any kind of chronic illness is clearly daunting - but i often think the doctors are the worst part of living like this.
My last four months have been HELL.
Even if you don't live with chronic illness, you've no doubt encountered the frustration of dealing with doctors offices. I guess it's particularly expected that if you're managing a life altering illness, you're going to see doctors more often than most, and as a matter of course... You're going to have some bad experiences.
\nFor some reason, it seems like I hit the jackpot when it comes to having AWFUL staff at the offices of the doctors that I like the most, or who prove to have been the most helpful. It's almost proportionate- the better the doctor, the worse his or her staff.
\nOver the last three months, I have had some horrible experiences that I would like to vent about.
\nLet's start with...
Cooper Reproductive Endocrinology.
\nWe are very happy with the doctor, but from the beginning, the IVF staff has been frustrating to say the least. We are attempting to create a healthy male embryo (because it's currently impossible to determine the gene that causes Ehlers-Danlos Syndrome type 3,the kind I have, and there's a 50% chance of passing it on to each of my off spring. Since it tends to be less severe in males, and less likely to be debilitating - if we have another child, we prefer to have another male child. Since we're already doing the testing - why NOT choose to avoid using an unhealthy or a female embryo.
\nI'm sure you can understand that nothing about Ivf is easy. We went through a year of monitored cycles and a failed IUI before finding out both of my tubes are blocked, and going towards IVF. Its very expensive and as I'm sure you can imagine, very stressful for everyone involved. One would think staff at such a place would be sensitive to this... But that's been ANYTHING but our experience. I'm not going to get into the detail I did when leaving feedback on thier Facebook page - but the staff has been less than helpful, at times downright rude. They have failed to give me directions for things like medication, and at any given time, it has seemed like no one there had a clue what was going on. One person would tell me "come back in three days" and when I'd get there, the scheduler never put me on the schedule and no one seems to know why I was told to come in. It's been so VERY frustrating.
\nThe first time they called with blood results, the woman starts rattling off all these numbers without ever telling me what they were for or why I'd need them. When I asked what all this was, her answer was "that's your levels". Real helpful, lady. From day one, tons of terms and short-handed speak was used, and both Justin and I very much feel like any time we ask a question, we are talked to as if we are stupid. I don't need to be talked down to... But I do think explaining what's going on and why, to a brand new patient, is necessary. There has been other issues - one of thier two blood lab women routinely bruises me and has caused my blood pressure to tank twice because she's not good at dealing with someone like myself who is A VERY hard stick.
\nWe're almost fifteen grand in by the time I have nineteen eggs retrieved... And at the end of all that.... We got just two healthy female embryos. So we're back at start. We just put out another eight grand to do one more retrieval. It's all we can afford. It's devistating to know the entire future of our family is determined by the next month or so. After our fruitless retrieval last time, we were told we could go right into another retrieval cycle, but instead, we had weeks of frustrating back-and-forth. Not only was my cycle not going normally (I'm at day 42 and I haven't ovulated yet- that's like... waaaay off)... But I also was given conflicting info by multiple people. I feel like I've wasted hundreds of dollars on blood work that had been all for nothing, because Im passing $100 for every blood draw, and I'm going to need at LEAST eight more to get through to another retrieval - if this period ever comes and we can retrieve next month. So frustrating.
\nMy Primary Care Physician's Office is HORRIBLE too.
They REFUSE to provide me with my refills for my regular medication EVERY MONTH. They are forever changing thier story and lying to me. Its hell- EVERY. SINGLE. MONTH.
\nMy primary care physician is a whole OTHER headache. It SHOULD BE so simple; I take one extended release Vyvanse every single day for Adhd and severe chronic fatigue. It helps me focus, it helps my behavior and relationships and to regulate my sleep; however, it's a very powerful stimulant medication and a controlled substance.
\nThe first aggravation is that my doctors office refuses to sign up for the program the state has, so that they can call these scripts in. As a result, I have to pick up a paper script every month - I have to call in the refill, drive to the doctors office to pick up the actual paper script, and then take it to the pharmacy. They often don't have it in stock and must order it - so then I have to go BACK the next day to fill the script. That's not an easy thing to do when you're disabled, living with severe chronic pain, and can't drive or leave the house often.
\nThat ALSO assumes that no part of the process I described doesn't go smoothly... And let me tell you... For almost TWO YEARS... it has NOT gone smoothly.
\nI have been on the medication for more than twelve years. When I first requested to restart it, after I had Kaedin, the insurance didn't want to pay and insisted that I go back through trials with Adderall, Ritalin and others first. I've had bad experiences and Vyvanse works very well, so we had to FIGHT to convince them to pay. Let's be clear... Without insurance the medication is $367 A MONTH. That's 30 pills. So we NEEDED insurance to pay. We fought, and after almost six months of paying for it ourselves and going broke... We convinced them.
\nBut that's not where the problems stopped.
\n Nope. That, my friend, would be WAY TOO EASY.
\nMy doctors office has a refill line, where you call and leave a message and they call you back. Only... They NEVER call me back. At first, I would assume they got my messages and show up to no script - after five or six times, I was told to "ask for a human for these, since you need paper scripts" (Mind you - I always leave on my message that I need a paper script and that I'll come pick that up. They still never ever call me. I've been told they "didn't get any messages from me" - doesn't matter what phone I call from... Magically, my messages to them ALL disappear.
\nSo I started asking for a human. When someone would call me back... I am told "For this script, it's a controlled substance - you need to come in every month to get it. You can't just have it refilled."
\nThe first time I was told this... I was like... "The doctor told me I had to be seen once every 90 days, or every three scripts basically... But... Okay..." and so in I went...
\nWhere the doctor told me that I only need to be seen every 90 days and he told me he'd make a note in my account, and he gave me the script (and of course, after I paid $30 for a needless visit!)
\nThe following month... Guess what!? EXACT. SAME. NONSENSE.
\nI argued with the nurse. I told her we'd JUST been through this. I told her that the doctor said he noted it in my account (she "couldn't find any notes") I told her she needed to ask the doctor personally.. And she calls back and says "The laws have changed and you need to come in every month for this."
\nSo I go in. Guess what the doctor says when he sees me? "You were just here! You only need to come in every 90 days for this...." I explain what happened - not to mention EVERY SINGLE MONTH this is causing me to run out of medication, and then have to start all over again once I refill it.... This medication causes DISABLING side effects for 1-3 days each time you restart it! Stomach cramps, diareah, nausea, horrible intestinal cramping, lightheadedness, dizziness, fidgeting, heavy sweating, uncontrollable excessive sleep, no appetite- the list goes on. Suffice to say... It's NOT fun. It destroys my life for days at a time EVERY. SINGLE. MONTH. while it readjust.
\nWithout the medication, I can barely keep my eyes open for more than 4 hours at a stretch. I can't focus or think straight, and I'm irritable and angry. And during the readjustment of going back ON after being off for days... Let's just say it's not good at all.
\nThis has gone on, and on and on. At one point, I had a lapse of my insurance. I didn't need my 90 day appointment yet, but they were, for the sixth time, demanding I couldn't refill it without coming in... So I asked for a cash visit price. I paid my $87 to be NEEDLESSLY SEEN (The doctor confirms EVERY SINGLE TIME that no one asked him & that I DON'T need to come in more than every 90 days... And ready for the kicker?
\nA week later, I get a bill for over $200. I call and demand to know what the bill is for. I was quoted a cash price for a refill appointment, one that I SHOULDN'T HAVE NEEDED TO GO TO IN THE FIRST PLACE... and I paid it on the date of service....so then you bill me HUNDREDS OF DOLLARS for the same appointment?
\nThey admit it was a mistake and tell me to bring in the bill for the office manager. A week later, when I'm well enough, I drove to a store, made a copy, and drop it off for the office manager.
\nI continue to get bills from Cooper Internal medicine for months. I call, again and again. No one does anything. The office manager never calls me back. I drop off a second copy of the bill for her. I get notified that it's going to COLLECTIONS. I drop off a third copy. I'm livid. Now I've got insurance, and I've paid copays, and they just apply them to the fake old bill and tell me I can't be seen again until I pay my recent copays! After sixteen phone calls with the Cooper billing and the office manager (who I'm convinced works for about a half hour once a week since she is literally NEVER EVER THERE) - They FINALLY contact me, saying they are clearing the old bill, and canceling the billing for it... That I'm in the clear.
\nThis continued on and on, while they continue NOT getting my refill messages, and insisting EVERY MONTH that the law changed and the doctor says "you have to come in again to get this script." Last month, out of meds, and utterly irate and damn near homicidal, Justin spends all day on the phone with them. They "can't find" October's script (they claim they never wrote one, and don't believe that I got one until Wegmans confirms I did indeed get and fill it) - they FINALLY call back after SIX angry phone calls (one of which, Justin was on hold for over an hour - while the nurse was AT LUNCH).
\nEnd result? "We can do this, this one last time, but you need to come in Dec for a visit."
\nNo shit, Sherlock. That would be NINETY DAYS since the last visit for the Vyvanse. That's how it's SUPPOSED to work. But again, I get the medication finally, after being out for six days, and I go through HELL again while my body adjusts. It's been HORRIBLE.
\nDuring the conversation, I was accused of "giving THEM a hard time" (are you kidding me?!). I was told they are "doing ME a favor but the laws changed and I need to come in every month now" - I ask, "So wait... The laws changed, but the Doctor has been DOING ME A FAVOR - as in - breaking the law by saying he only needs to see me every 90 days? How does THAT work exactly?" Then she stumbles, and corrects herself... "No. You need to come in however often the doctor says." Right. So every 90 days. Except that EVERY SINGLE MONTH you tell me that's not true and you refuse to get the script for me to pick up. I'm BEYOND done.
\nI will, once again, get this IN WRITING from my primary care doctor when I'm in his office. I'm also going to start asking for all three scripts when I come in. I can only fill them every thirty days, so... Let's REALLY hope he'll do that.
My pain management office is THE WORST.
They treat me like I'm a pain in the ass... For following THIER instructions.
\nFor nearly five years, I was on two medications for pain. One extended release that I take twice daily- that's supposed to reduce my pain baseline and allow me to function. The other is a breakthrough medication that I take "as needed" and for times when the extended release isn't keeping up.
\nI had been happy with my doctor, with my medication, and over the years, after settling on a dosage and type... I haven't had any changes in years. The ONLY change I have made, is that I was one receiving the equivalent of six pills a day for breakthrough. I found that at the months end, I had pills left that I didn't need. Wanting to be responsible, and to install trust, I voluntarily lowered my pills from six, to five... Then again, to four.
\nSince then, I have not changed my medication at all. I only changed doctors when that practice closed, the doctor retired, and all his patients were sold to another practice...and my monthly appointments moved to that office.
\nSo I go to my appointment in August - ( that month I had to be seen in a sattalite office, because we were going away and I had to be seen before we left). So I didn't see my regular doctor or PA, I went into the other office, saw a PA who was basically tossed two scripts at me (no discussion whatsoever) -I was told that they were cutting my extended release medication in HALF (After nearly six years) and when I started to cry and asked WHY... She basically demanded that I leave, and got up and walked out of the office. She wouldn't discuss it, she wouldn't address my concerns, she wouldn't get a doctor - nothing.
\nThe following month, I had my husband take me in and we met with the actual doctor. "New regulations. Laws are changing... We want to lower everyone... Blah blah blah." I'm like... So it doesn't matter what works, what your history has been, how many years of clear drug tests you've had - that I've already been ON the lower dose but was moved UP to this because it lasted must longer and basically gave my life back... She basically shrugged me off
\n She admitted that no, there's no law that limits you to a certain specific amount of type and she said that no, not everyone would be affected, not everyone could be lowered... but that they were lowering everyone's medication across the board,no matter what, to get closer to (or under) the CDC suggested dosages, regardless of your condition, your need, your metabolism, your history, etc.
\nThat alone is insane, unethical and INFURIATING.
\nI don't have a condition that's treatable - I have NEVER asked for an increase, or complained in a way that would be concerning. I have ZERO symptoms of misuse or abuse of any drug EVER - I have a LIFE LONG awful condition, and they basically tell me "We don't actually give a fuck if this means you're left unable to function at all... We don't care if there's nothing you can do but lie in bed 24/7 - this is what we're doing to you.
\nWe don't want the state coming after our license, so we're not treating your condition or managing your pain... We're just going to do the bare minimum and so you're going to just deal with it."
\nThe doctor does make it sound like she won't be inhumane, she won't lower me suddenly or a huge amount - but admits her goal is to get me to 1/3 my dose, taking a pill three times a day instead of twice - so a much lower dose... every 8 hours.
\nLet's do some realistic thinking; Not only does this tie me to constantly chasing my horrific pain with inadequate medication... This means, even if I take my medication SECONDS before falling asleep (something that's not possible because my sleep is even MORE horrendous and unpredictable the more pain I'm in) - it means that the I can not physically sleep ever again, for more than 7.5 hrs, because if I do, I'll wake up in horrible pain or withdraw symptoms or both. To me - that's completely inhumane and unreasonable. We discuss the potential of installing a pain medication pump- and I immediately follow up on that with the doctor that does them. She says she won't lower me any more while I follow up on the surgery options.
\nTwo months go by on this horrific half dose... I'm in the wheel chair all the time, I can't really do anything at all anymore. I'm not leaving my house- I can't make my kid meals, I no longer eat, and my life has been crippled by the medication change. I go see a specialist to get a pump installed and he agrees, my doctors office isn't being responsible at all and doing what they are doing isn't the answer. The following month, I talk to my regular PA about my ongoing concerns... She decides to try me on a different extended release, hoping it will help.
\n"What if I have major problems? What if I have another issue with gi problems (I had emergency surgery for a GI blockage the last time I took a medication related to this one). What if it's not working well?" - she tells me that if there's any problem-to call, make an appointment, and come back in early.
\nI started the new medication on October 1st. The change over, after six years on the first medication, was brutal. I'm sick, shaking, sweaty nauseous, dizzy, I've got a horrible headache. I'm depressed, anxious, miserable.
\nAfter five days, this starts to fade... But one thing is VERY clear... I'm in a SHIT TON of pain. Way more than with the old extended release. I am using breakthrough meds every single time I can - because I'm in so much pain and every six to eight hours, I'm going through withdrawal symptoms - painful jaw locking with sudden and serious jaw clenching and yawning. I'm sweating so badly that I am shaking. I feel like I've got a horrible fever for days. Two weeks in, I realize that this medication is causes horrible issues all around - right down to severe sleep paralysis on the rare occasion that im sleeping. I haven't been in pain like this for YEARS.
\nI call the office, and ask for an appointment with my PA to discuss the situation. I go for the appointment... The PA isn't there. Instead, I'm sent in with another PA, who tells me that the first PA is NEVER there on that day of the week. She then, with great attitude, demands to know who told me I could take my breakthrough meds more than prescribed (even though the bottle says 1 every 8 hours,they are not actually to be taken that way - My own PA was very clear on how Im to take them as needed... Usually one, then another in six hours, but if one doesn't work, after an hour, I can take a second, and then wait six hours. Normally, by the months end, i have several pills left but not some huge surpluss. This month, I've got fourteen days left until refill... And only seven days of medication left.
\nThe PA I see, pretty much accuses me of "blowing through my medication" - demands to know "who I called and talked to who told me I could take extra medication" and then said there's nothing she can do - that I'm still "way over the recommended dosage" and... here's the kicker.... That even IF I go back to the old medication when I come back in a few weeks... They are going to put me on a "much lower dosage".
\nExcuse the fuck out of me?
\nI was TOLD to come back in if there were problems, and I DO, and I'm treated like garbage because...?
\nThe scheduler completely ignored me when I asked if they had any open appointments SPECIFICALLY with my normal PA. He sent me in to see whoever the hell he felt like, and as a result, I'm being treated like a fucking addict by this asshole PA who basically says "I have no idea why you're here.. I can't do anything for you. We don't just give you more medication because you want more, and we won't put you back on the other medication until the end of the month."
\nI explained that I thought that maybe I could turn in the rest of the month of the medication and they could return me to the medication I was on before - she LAUGHS at me, and says that "Sure, you can turn that medication in if it's not working."
\nWhat she meant was... I could turn in the medication that's not WORKING well... And then have NOTHING AT ALL to take for TWO WEEKS.
\nI've been on a fairly high dose of extended release medication for SIX YEARS.
\nCan you tell me how it's AT ALL legal or safe to tell a patient to just STOP taking medication entirely for a few weeks.
\nIf I could do that- you STUPID BITCH - I Wouldn't be on it in the FIRST PLACE.
\nApparently, this is funny to her. And just like months earlier, she gets up and walks out of the room while I'm in the middle of a question.
Mind you... I've remained PAINFULLY calm. I've been polite, apologetic for bringing her into the middle of this (I reminded her that I scheduled with my regular PA but was sent to see her-which was NOT my intention - that I was told by my PA to follow up if there was a problem- She ROLLED HER EYES at me.)
\nAfter walking out of the appointment, leaving me with ZERO help or advice and basically taunting me that there's nothing they will do for me, and that I'll need to come back for my regular appointment in two weeks, and tough shit until then- taunting me with "I'll document our discussion for the doctor." - I will put MONEY on the fact the she more or less types "patient came in and wanted more medication" and that she fails to mention ANY of the side effects, any of the ACTUAL concerns or conversation that I tried to have. I'm livid-im in horrific pain, but I never shed a single tear, or show that I'm the slightest bit upset.
\nWhen I go out to the lobby... It gets even better. They tell me they don't have any appointments for my normal date, so they can't see me until Dec 7th. That means, not only am I on medication that's not working, and I'm running out of breakthrough medication early because I'm in so much pain - but now they are telling me that I need to go AN ADDITIONAL WEEK without medication at all... Because they canceled my regular appointment and they won't be able to see me, since I came in early for this useless appointment.
\nI'm like... "I guess I'll have to go to another office.. I can't be without medication for that long."
\nShe tells me, "but then you'll see another provider and have the same issue as today. They won't want to change anything, theyll just refill your medications as they are... And you'll still need to see the doctor or your PA to discuss these issues."
\nI'm like.. "that sucks, but theres no choice. I can't be off medication for a week. I'm supposed to have surgery on the 7th. You can't just stop taking my medications for a week..."
\n(how do these monsters NOT KNOW how dangerous it would be to stop an opiate for seven days after SIX YEARS. Not to mention the horrific pain I'd be in?!)
\nShe tells me that she's got no appointments with my doctor or PA... And then she stares at me. Ten minutes go by, and I'm like "I'll take anything at any time, at any office but I need to be seen by my regular date."
\nAfter all this back and forth bullshit.... Im standing on my broken foot...in silence,fighting back tears and homicidal rage when she says "I've got an appointment with the doctor. Here. On the 1st at 230pm."
\nSo.... You've got NOTHING, BUT SUDDENLY... You FIND an appointment on the correct day?
All i could muster was "That would be great,thanks."
\nBy the time I limp out to the car, on my broken foot, I'm shaking - I'm so angry and furious, I almost can't feel how much pain I'm in. Almost.
\nAnd that's when the phone rings...
The reproductive Endocrinology doctors office screwed up my bloodwork the day before and asked me to come back in after my pain appointment to re-do it. They told me they were open until 5pm (its 345pm).
\nThey want to know where I am... Because in Fridays, they all leave by 345 and they thought I was coming in.
\nI couldnt make this shit up, folks. I couldnt if I tried.
\nAs if ALL THAT wasn't bad enough... The office who is supposed to do my surgical pain pump install? My surgery on the 7th of December? Yeah-so that doctors office claims that both my insurance companies insist that they are each primary - and she can't schedule the surgery until I clear up which one is actually primary.
\nWhat's the problem with that?
Oh... Just that I already spent EIGHT HOURS dealing with this two weeks ago! (this was after she sent me on a wild goose chase claiming they dont take medicare,only later claiming they dont take MEDICAID not Medicare.)
Both companies CLEARLY stated which one of them is the primary and there's not a damn thing more that I can do to clear this up any more. My husband called to get them to send it in writing... But of course I didn't get it until TODAY... and now the office is closed for the holiday until MONDAY. By then, it's very likely it'll be too late to actually schedule my surgery on the 7th,and I'll have to wait. If it goes into the new year... Guess how many thousands it'll cost me, since I'll no longer have met my deductible for the year.
I wont even tell you how i tried three times to get my foot x-rayed,only to find out they dont follow the hours posted on thier damn door!!
\nI'm starting to think the world wants me dead. If not from my condition... I'm going to get to the point where I can't deal with this shit anymore, and I'm going to absolutely lose my mind and kill myself. Because I can't take much more, folks. Between the pain and the anger of dealing with these assholes, I can't do it anymore. It's INHUMANE to be treated like this : period.
I'm going to blog during EDS Awareness Month. Im sure not people are writing about their pain, hospital stays, surgeries and that's cool. My biggest complaints about what makes it so difficult to live with Ehlers Danlos Syndrome isn't really all about the physical symptoms.
Before anything else... I apologize that these will be long... i feel like I've hardly had anyone to talk to for months. I haven't seen most of my "friends" in a year or more. I really need someone to talk to, even though I am not up for long phone calls or going to lunch. So this is all I've got.
If you consider yourself a friend, please take some time to read these three blogs. I really don't ask much of folks - I never ask for donations to a charity, I don't sell any direct marketing crap, and I rarely bother anyone with my issues for more than a few minutes .... I hardly get to see many of you, ever.
I do still very much need support from friends, and being in too much pain to talk on the phone doesn't mean I don't miss having someone to listen and to be a friend, so I'd REALLY love some feedback on how I deal with the three hardest parts about life with EDS. This is the first of the series of THREE blogs.
Part One; The people closest to me are the ones making my life SO. MUCH. HARDER. than it should be & I don't know how to change it.
One would think that the people who spend the most time around me see firsthand how sick I legitimately am, and that those people would, as a result, try to make my life easier. And in some ways, they do, they definitely do.
Justin busts his ass, working nonstop, often around the clock, and despite the fact that I'm pretty terrible with money, he rarely has complained about it. He deserves an award for his undeniable work ethic and I would hope that he knows that the only reason I can't stand how much he works is only because I can't stand that he's NEVER around. I'm thrilled that he likes what he's doing now, and that he can make a good living doing it. I'm thrilled that he isn't lazy because we'd really be fucked if he was.
In the same regard, my mom also does so much - for me, for my son, and for Justin too. First of all, the three of us live here completely for free. While my dad was the one that worked most of my life, my mom still works four or five days most weeks, not to mention pays all the bills, keeps several of her sons from self destructing on the regular, and she cares for my father who (although he is completely not) behaves like an invalid. I mean, seriously, she can be doing seventy things for seventeen people AFTER having cleaned a house for eight hours, and he's all "Hey, when's dinner going to be ready, I'm starving...." No joke, and I don't know how she tolerates it.
Beyond letting us live here (because in reality, if we HAD to afford a place for the three of us, we would be in a REALLY sad situation. As it is, it doesn't feel like we have much, and that's MAINLY because of how fucking expensive it is to be disabled. Justin does fix my parents cars, we buy groceries, he fixes stuff around the house and buys things the household needs, replaces things that break, etc. We aren't jut grifters, I mean, we do try to contribute, but we don't pay a specific rent and utilities.
On top of that, over the years, my mother has allowed us to put thousands of dollars worth of crap on her charge cards. Justin has inexplicably terrible credit and mine, well, I had to leave my house to be foreclosed and haven't been able to have a job for going on seven years. So big purchases have always fallen to my mom, with the perfect credit, who has allowed us to use her killer credit score to do things like renovating Kaedin's room and building his loft bed. Nearly all the vet bills over the years for our cats, dogs and rabbits, have gone on the Carecredit account that I couldn't qualify for without her.
Hell, our entire trip to Hawaii occurred RIGHT when he got laid off, and we borrowed nearly three grand so we didn't have to cancel that trip.
Beyond that, there have been countless vehicle rentals, short term loans here and there when it was too far from payday and I had a doctors copay, or prescriptions to pick up... even my entire Victoria secret account in in her name. And while Justin makes a ton of payments, there have been PLENTY she's made, and even more that we wouldn't have paid on time had she not been on top of all the due dates.
I'm sick, have a horrible short term memory, and I've always been bad with managing cash, and Justin is no better. It always seems like our problem is just constantly needing more than we have ...but I'm positive that he and I are both terrible suckers for a good sale, that my Lego collection has a TON to do with our being broke, and that we are equally disorganized and stressed out and we take it out on our bank account. If it wasn't for my moms credit and her staying on top of us, we'd be fucked. I mean, like I never would have gotten a career going in the first place because she already cleaned up most of my credit once BEFORE. It really is not my goal to make her more stressed and to have a ton of revolving credit tied to her name, but I also don't know how we'd survive without her help.
There are many other things... She does do ALL of our laundry (even if we've repeatedly insisted that we can do it ourselves. She doesn't believe in once a month laundry binges, and so what goes in the hampers (Or in Justin and Kaedin's case, what lands on the floor) - she washes, folds, and then drives us crazy piling up clean clothes on every available surface endlessly harassing us about putting them away somewhere. It's a vicious cycle.
And although we mostly buy our own groceries, and my mom does cook far less than most of my life - she does make or order food with Kaedin in mind, probably five nights a week. A few times a week she makes enough or brings home leftovers that she offers to me or Justin or that she plans for us to eat in the first place. She knows what both of us do and don't eat, and keeps us in mind when she's making food, and even when she orders out, about half the time, her leftovers are left for me or the kid.
And there's no denying that she has taken over the care of nearly all the animals. Despite the fact that I've insisted that the hedgehog, Kaedin's hermit crabs, Rosie the disabled bunny I'm providing hospice care for, AND the new kitten are **NOT HER PROBLEMS** - she still MAKES THEM her problem, checking on them all, and feeding, watering, giving meds to, etc etc etc. She's the only one up early, so she feeds all six cats breakfast. She also puts Yogi out, takes Justins dog (Benji) out, and then walks Kai most mornings too. And feeds them. And then if Kaedin doesn't move quickly enough, she's giving them all dinner at 6pm too.
Last but not at all least, she manages ALL the cat litter boxes for the five cats (all five of whom Justin played a part in bringing into the house.. ) Not to mention the fact that she *completely* took over the feeding and cleaning for my (now 6) rabbits and (4) chinchillas when I was pregnant and then in and out of the hospital so sick... she cleans all those cages every week by herself.
But this is what brings me to my point. With all that my mom does for our family...you would think that Justin would be very appreciative and hard at work to keep from butting heads with her... wouldn't you?
But no. Nope, it's bordering on World War Three around here at all times. Don't get me wrong either... I'm not blaming Justin soley. There's definitely a complicated dynamic at play in this house. My mom and I fight like cats and dogs too...it's definitely NOT just him.
You would think that these two people, my mom and my husband who SEE how crappy I feel all the time, would come together in some way, right? After all, these are the two people who KNEW ME, and SAW ME, when I was living life and enjoying myself and working hard. So they know, first hand, how little I go out and do anything. They both realize that I hardly have any friends outside of the Facebook variety, and both of them would probably agree that I shouldn't be writing this blog and both would probably rather I just deleted my Facebook all together...but again, remember... that's my whole point here.
How can the two people, who see me in the same clothes for days on end, barely moving from one spot... how can these people be at constant odds with one another, ALWAYS putting me in the middle?
If it isn't my mom going on and on and on about some LOOK Justin gave her, or some smartass comment he made or about how he left something unlocked, or clothes on the floor, or crap on top of the clothes hamper, or boxes on the landing, etc etc etc etc. And on the rare occasion that SHE isn't fuming mad about somethin Justin did, didn't do, or said.... then HE is talking my ear off about whatever SHE had the nerve to say to HIM.
I swear to god, ninety percent of it is ridiculous communication issues. Justin can't stand the way most of my family communicates. That's no secret. He's blown up at me for the **exact same type of things** that she says, and I think, most of the time, that he's being overly sensitive and weird about the way he handles NORMAL human conversations.
For example... if my mom wants her brakes done, and she wants Justin to do them, she may bump into him getting ready for work in the morning and say something like "Are you working today?"
Now, IMMEDIATELY, with that one question, Justin is up in arms. Seriously. Like with that one question, he becomes all combative and pissy and irritated. The eye rolling begins.
Now, she's probably asking if he's working both to make small talk, and to know if he's in a big hurry before she starts a longer conversation, but he IMMEDIATELY wants her to get to the point. He literally wants her to walk into the room, see hi and say "Can you fix my brakes on Saturday?" At least, that's what it certainly seems like he wants...mostly I think he wishes that no one would talk to him unless he talks to them. That's how it feels anyway. She's not wrong at all- there's not a damn thing that is safe to ask him. He gets abrasive just about any time anyone tries to talk to him, ESPECIALLY if you're asking him questions. It really feels like he's on the autism spectrum when this starts, because he REALLY gets uncomfortable with what seems like the most BASIC of small talk.
But I digress... She'll ask if he's getting ready for work, he'll get all pissed off and shrug with his back to her and mumble "yeah." -or something equally short and abrasive. (Now in her mind, she'll be all "wtf is with his attitude, all I asked is weather or not he is getting ready for work." And she will IMMEDIATELY save this interaction to tell me ALL ABOUT, the ..second he leaves the house weather it involves WAKING ME UP to tell me or not. And I'll get her version, high definition DETAIL about 'WHAT A JERK MY HUSBAND IS TO HER'. I could play this conversation back on a loop because this happens at least twice a week.)
Anyway, so she'll ask. Hell mumble a short, shitty answer, so she'll try to cut to the chase and say something like;
like "Uh...okay... So I was wondering if you guys are going to be around on Saturday...."
By question number two, Justin is like, seething mad. Again... CANT SHE JUST GET TO THE POINT?! (Again, I feel like there's not a damn thing wrong about asking if someone will be around before asking a favor of them, but, I digress.)
It's generally at this point where he puts up a wall and decides that he's going to be as disagreeable and miserable as possible to anything else that she says. Now, if she starts to talk about her work schedule, or something about Kaedin or about how her sister called forty two times that morning, he cools off. He's fine. I've heard multiple conversations in the morning go on, perfectly pleasantly, some of them even going on for so long that he's been made late to work (moreso back when he had an office desk job, not really anymore)- but she would chat about my brothers, her sister, the people she cleans for, and he would casually chat back. But my god, as soon as you ask him a question, the tides turn.
So anyways, when Justin gets all shitty and mumbley - he really acts like a giant prick. Hell say and do things SPECIFICALLY passive aggressively, many of which he'll do JUST to bug my mother, and I know this, because he's done the EXACT same to me. He gets all snarky and sarcastic, short tempered, he'll snap at you, mumble, talk with his back to you, or walk out of the room right in the middle of the conversation. I don't know why he is like that, because I've only ever seen him do it to me and my mom.
He seems to have INFINITE patience for anyone in his own family (except his sister) and when it comes to his friends or work people... forget it. He'll chat with them on the phone like a teenaged girl and their bff. He's always been a little more on the quiet side around people that didn't know him well, like my friends or at the rescue around the volunteers... but Justin has always been a pretty damn social person who has no problem getting lost in conversation. Like my brother Wayne will stop by, and Justin can talk to him for hours.
You would think that these two, who see me in pain all the time...these two people who know I get horrible sleep, not enough of it, and that other times, I'm COMPLETELY helplessly exhausted and can't do anything BUT SLEEP... often for days on end... well, one would think that they'd both make some kind of effort to NOT constantly get into these little bullshit spats about nothing, and then INVOLVE ME.
Like honest to god... it's always annoyed me that my mom has a habit of waking me up, or rather, talking to me weather I'm awake or not, by coming to my door or into my bedroom, and giving me a rundown on who's been fed, what time it is, weather or not anyone needed to be walked, fed, etc. She'll also give me HER schedule for the day, followed by anything she expects or at least hopes, that I'll do that day. And then she finishes it with things like "Kai hasn't been out, Kaedin needs lunch, and the hedgehog needed water."
Sigh. Yes, it annoys the hell out of me when my mom gives me to-do lists. Especially when they are things that I've always made perfectly clear that I'd like to do, or that I hope to get done. I can't stand the house being a mess either, but considering how infrequently I feel well enough to do much of anything... her endless to-do notes and her "morning meetings" are aggravating. No, I don't like having her tell me that the clothes on the couch that she washed and folded have needed to be put away for two weeks straight. But I also didn't ask her to wash them, or to put them on the couch. She could have JUST AS EASILY stuck them in my bedroom somewhere. Or not have washed them at all. But when she does this and Justin is around, it makes him five times more angry and annoyed than it makes me. And she's not even usually talking to him.
Yes, I wish that on days where I have barely opened my eyes, that she wouldn't parade in and out fourteen times, even if a few of those times were to feed kai, take him out on a walk, to remind me that the cell phone bill is due and that the credit card needs to be paid by 5 or we'll get hit with a late fee... but the reality is, I'm generally NOT REALLY AWAKE and I don't remember anything she's said ten minutes later. With the frequency of things I've forgotten, you'ld think she wouldn't bother. The number of times she's left notes that I still haven't even SEEN by the time she gets HOME form work is just as bad.
Despite seeing me, unable to move, unable to sleep, in constant pain, barely eating anything for days on end... it VERY MUCH FEELS like she doesn't believe that I'm sick at all, because the way she speaks to me, it very much comes across that she thinks Im just lazy and why can't I just do the things that she wants me to do. She doesn't seem to understand that if I scraped together the energy to make Kaedin peanut butter and jelly... I then didn't feel well enough to MOVE for the next eight hours. So yeah, sorry the clothes still aren't put away, but that didn't make the short list for today. Or this week.
The other huge issue with my mom is that she takes on EVERYTHING. Like, everything weather or not she needs to. She feels the need to inform me of what time Kaedin got up, weather or not he had a drink, weather or not he ate, what it was, and when, weather he's dressed and what he's doing currently. If she comes home from being somewhere... she expects the SAME RUNDOWN. On every living thing in the house. Did Rosie get her meds? Did Justin make the capital one payment before five? What did Kaedin eat for lunch? And when? (And the WORST PART of this insane nonstop endless questioning is that she JUDGES US NONSTOP, HORRIBLY for whatever the answer is.)
-Kaedin didn't eat lunch until four thirty? Eye roll.
-Kaedin never had breakfast? Why not? Sigh, huff.
-If you don't get that payment in before FIVE there's going to be a late fee. (Mind you, I was SLEEPING/half asleep and didn't hear the first reminder that morning!!)
And worse... most of the time I CANT REMEMBER half the things she wants to know. How many times was Kai out? Did he pee AND POOP? When was the last time he was out? Has he had water? (His bowl is empty, she says, sighing as she fills it). Everything she says to us is tinged with the attitude of "you people never do ANYTHING RIGHT..." and she passes judgement on the way we raise Kaedin NONSTOP.
It doesn't matter if he hasn't been on the iPad all day and we are doing reading words... "Doesn't he spend enough time not that thing?" She'll ask what he had for lunch... chicken nuggets and dip, and yogurt. "chicken, really? He had children for dinner last night." If he's eating a snack, it doesn't matter how many meals he's had, it's the wrong snack, the wrong amount and the wrong time of day.
She can't stand that Kaedin goes to bed near midnight even though it's just what naturally seems to work for us. It doesn't matter that even when Justin and I ARENT HOME, he still ends up in bed close to midnight. It's still wrong when WE DO IT. And he's only up that late for them because it's what we've gotten him used to.
It very much feels like my parents (especially my mother, but my dad is just as judgmental, bossy and nasty about it)- believes that Justin and I are COMPLETELY incompetent. Despite the fact that most of her own children have not turned out too well, my mother has some hard and fast rules about how children are supposed to be raised and because we don't agree and we don't follow those rules... she will NEVER EVER EVER let us forget about it.
Similarly... Justin is a huge asshole to my mother about certain things. Like the fact that my mom started warming up Kaedin's milk when he was little and now he likes it and asks for it that way. He LOATHES that Kaedin likes warm milk,especially at bed... like, he gets, unrationally upset about it. Similarly, Justin can't STAND the use of sippy cups. No matter how many times I've pointed out that I used silly cups well into my childhood, because it minimizes spills around the house, Justin HATES THEM WITH A PASSION for no reason that he can possibly explain, and this must be my mothers fault... so when she complains that she can't if she any of Kaedin's cups (a daily complaint)- he snarks back that Kaedin is six and shouldn't be using them anyway. "He should learn how to drink out of a real cup," he says. Never mind that Kaedin CAN drink out of any cup, just fine thanks. When I point out that I don't want drinks spilled, his reply is that ALL DRINKS SHOULD BE HAD ONLY AROUND THE TABLE THEN. This from the man who carries MULTIPLE quarts of iced tea EVERYWHERE HE GOES and drinks multiple quarts daily. But how DARE Kaedin do it.
(Also, Justin leaves said tea containers everywhere. There's at least ten in our bedroom and my car, and he rarely puts them in the recycling bin....yet another complaint I hear from my mother that he makes ZERO EFFORT to fix. )
There are other f*d up things that I SWEAR Justin does JUST TO PISS OFF MY MOTHER. Like his habit of dropping all his shit on top of the hamper outside our bedroom door and then leaving it there. She can't take the wash out, and half the time, I can't put laundry in (usually his, that he leave son the floor in the bathroom and bedroom.. I get that he's busy and works a lot but his household cleanliness / helpfulness IS abysmal)... so the more it gets mentioned, the more I swear to GOD, he's doing it just to piss us both of. I've found mail, packages, envelopes, shopping bags full for, Walmart or Wawa (including bags of his damn bottles of tea!!!!)- I've also found a PRINTER, his phone, other wires and work tools... I mean, you name it. If it's in his hands when he gets home, it goes on/in the hamper. And he NEVER EVER MOVES THE SHIT. And god forbid my mom say something ...because he snaps "No one asked you to do the laundry. Just leave it alone." But she just moves the stuff, he gets mad, and it goes in a circle.
Similarly, he brings home bags form stores, puts them down in the hallway or kitchen and doesn't touch them again. Now, the MOMENT someone gets sick of looking at the bags of food or other items and actually puts them away, the moment he notices, I hear "ARE YOU KIDDING ME!? Nothing is safe from your mother. I JUST put those canned tomatoes/boxes of toothpaste/piles of papers down yesterday/last night / two months ago and she's got the bags gone, and I can't find my stuff. If I put it away, he grumbles and asks where it is. If
SHE moved it, I swear to god he puts a strike in some notebook and saves up his sass for the next time she dares to ask him a question. Sigh.
Listen... I am **eternally grateful for*** (and very much in love with) my husband. For more than twenty years, he's been the person above anyone else, who has always been there for me. Long before we became a couple and had a kid (over a seven day period, but that's a story for another day, for the few who don't know it.)- Justin has always been my rock, my backbone, my biggest supporter and the first to call me on my crap. There's a damn good reason that we were best friends for fourteen years before we fell in love.
It makes me very sad that I never got the opportunity to be a functioning, career-focused, bad ass cop while he and I were together. I feel terrible that he missed out on being with me when I actually felt that i had something to offer. I was auditing real hard for a while- running a successful nonprofit, owning a house, working many years at the same department where I was happy and hardworking (well, at least until the shit that went down resulting in my being transferred to District 4, but anywho...)...
By the time Justin and I got together, I was an emotional mess, nine months pregnant and about to give a baby up for adoption. I was not the healthy, perky, put-together 20-something with blonde highlights who loved to cook, who rode her motorcycle and went horseback riding every Sunday.
Nope... by the time he and I got together, the stalker was fully invested in destroying my life, the rescue was struggling financially, I was 180 lbs and COMPLETELY ready to be done with being pregnant, and I was in CONSTANT severe pain like I'd never experienced in my life. My back and hips hurt so bad that I never wanted to be awake. I was desperate to get the baby adopted and get back to work, but I was emotionally drained. Instead of having all these great things to offer in a relationship, I was back living with my parents, driving my falling apart piece of shit car, completely overwhelmed with everything going on in my life and I was beyond broke. I also had a freshly broken tooth and a nice case of the flu. I was just gorgeous, let me tell you.
When Justin and I fell in love in January 2011.... the cheerful social butterfly that hung out at OMaddys seven days a week was LONG GONE. And I definitely wasn't the confident, skinny chick that shaved her legs and wore makeup and dyed her hair constantly like I had been when I was throwing myself into the mess of a relationship with Mikey for almost three years. As a matter of fact, when Justin suggested that we name the baby, get a car seat, and bring him home and be parents.... I was coming off the worst year of my life, and I had never looked or felt worse - inside or out. I have no idea how he didn't seen me as an utter train wreck and run run run.
When he told me (days before Christmas, driving in his car to the rescue) that he thought I looked beautiful 8 months pregnant, I swear that he must have been out of his mind. My gross skin, swollen ankles, greasy hair, and I was SO FAT... there HAD TO BE some magical voo-doo at work... because I mean it... I had never looked or felt worse, inside or out. It took me years to reconcile that Justin really DOES love me and that he didn't just save my life (and Kaedin's) because he's forever the nice-guy best friend.
For all the amazing things he has done for both Kaedin and I, from paying for and keeping me insured, to paying for all my medications, paying off the IRS First time homebuyers loan from my house (8 grand), bailing out the rescue financially for many months not to mention killing himself to go and clean and care for things while I was often in the hospital or at home too sick..., for keeping me sane and supporting me endlessly during the years of stalking and harassment (despite it getting him dragged down into the drama too)- I can't possibly ever repay him or thank him enough.
Then there are the incredible, amazing and life-saving thins that he's done... like, i dunno... being handed a baby one day and deciding "Hey, sure, I never wanted kids, and had no girlfriend just a few days ago, but sure, let's get married, name this kid and Ill sigh the birth certificate and we'll be parents..." - there are plenty of other insanely kind things that he's bailed me out of, like getting me into pain management when I was literally hanging by a teeny tiny thread that was sooooo close to snapping. He has EASILY spent 3/4 of his income on me and my son for the last SIX years.
He put out thousands of dollars to reverse the tubal ligation that he told me not to have done in the first place (and then responding to THAT surgery's failure with "It's okay, we'll find a way to afford IVF eventually..."... I mean, the man deserves sainthood just for putting up with my mood swings, there's no doubt about it...
But... when it comes to dealing with my mother, It is CLEAR that she is his kryptonite. She is also the one HUGE problem that I deal with constantly for which he not only can't help make things better, but he actually CONSTANTLY makes it worse. Like.... way worse.
When Justin gets busy at work, he gets REALLY BUSY. LIKE, I barely see him, for days, sometimes weeks on end. This means that I'm basically a single parent during that time. I have zero help. He MAY run the dog out before or after going to or coming home from work, but mostly he may as well be in vacation, because he even sleeps in his truck at the office if it means getting an actual nap between work days, rather than driving home just long enough to turn and go back.
This month has been exactly that way... I haven't really seen him for almost three weeks or more. Many times, I haven't actually laid eyes on him for more than ten minutes in two days.
So when my mom is demanding to know when he'll have money for xyz that we owe them- and she know so haven't been out in two days, let alone had a chance to sit down with Justin and discuss our currently budget... it really is lots of fun.
Or when my parents berate me for whatever attitude he gave them before leaving for work, or whatever he left in the sink, or whether or not he took the dog out... they never really give HIM attitude, not along with an earful about what they are pissed about. Nope, that gets saved for me, for the first moment Justin isn't around.
I love the fact that I have to listen to my moms constant attitude about Justin, when it's clear she doesn't appreciate that without him- who would be supporting Kaedin and I? You know, paying the two grand plus a month it costs to keep me alive? You'ld think she'd be a little more grateful for all that he does for us. And that without him, she'd really be in a hole financially... I mean, six years and STILL no word on disability.
And Justin- yes, I know you can't stand my mother. But his CONSTANT passive aggressive bullshit with her never ends.
If I'm not lecturing her like "JUST ASK HIM WHAT YOU WSNT TO ASK HIM!"
Yes. She'd rather dance around a question for fifteen minutes. So instead of "hey, do you think you can fix woodys brakes on Saturday?" Shell ask him fifty questions about his schedule, weather or not he's working, weather he's got plans, if the weather is supposed to be good, does Kaedin have anything going on...etc etc etc. yes, it's fucking maddening... but as annoying as it is... he's also completely insane in the way he expects people to talk to him. And I'm so sick of both of them.
I put up with his mom's crap for nearly five years before blowing up and giving her an earful once. I have had nothing but a thick guilt trip laid on me about how I'm destroying his entire family by basically freezing out his mother. (Mind you, I did not do that. I have been absolutely nothing but civil since I blew up at her for being such a bitch on Christmas).
Now, granted, he lives here, so he has to see my parents far. more (and NO ONE is arguing that either of my parents are lovely people who are easy to get along with)- but Justin makes literally ZERO attempt to keep the peace for my sake. Not once, not ever.
I just wish that these people would stop and think once in a while about how hard it is to be trapped in your body, feeling like crap nonstop 24/7. I'm not disabled because it's fun or convenient feeling like a giants fucking burden on everyone... so I REALLY REALLY REALLY wish my husband would stop snapping at my mother and rolling his eyes at small talk and I REALLY WISH my mom would stop trying to micromanage both of our lives and our schedule and I wish she'd just come right out and get to the point when asking Justin something...
Because as much as I appreciate everything they both have done for me and Kaedin and as much as I love both of them... I wish they would both just shut the fuck up and stop putting me in the middle of their crap, because the stress is
NOT making my already difficult life any better !!!!
TL/DR.. My mom and my husband are both assholes.
I attended my SSI disability hearing with my attorney at 9 o'clock this morning. Many people had asked me to let them know how it went, and what took place, so I wanted to share my experience with everyone.
We won't know for sure what will be the outcome of my entire social security disability application until we receive a written determination from the judge, but at the end of this morning's hearing my attorney said that he felt that "It went really well and that he believes I will be approved" It can take as much as 90 days after the hearing to receive a written determination and they are generally mailed to the applicant and their attorney at the same time.
Having now gone through this process, first independently and without a lawyer, and then after two denials we hired an attorney, and I must say... despite the fact that attorneys are well-paid for the work that they do (I believe they receive a maximum payment of $6,000 from your back-paid benefits IF you are approved) - I am SO GLAD that I was represented by an attorney. Knowing what I know now, I am glad that I applied when I did (because it makes me eligible for back pay and even though I was rejected those first two times, I recommend to anyone just starting out that you go ahead and get started because the closer the time you file to the last time you were actually WORKING, the better of you'll be.
Meeting with my Attorney and Preparing for the Hearing
Also, now having been through this - even with all of my doctors supporting my application, I realize that I should have COMPLETELY expected to be rejected multiple times. You are almost entirely guaranteed to be rejected if you are not being represented by an attorney - the reality is that the system is set-up to benefit those who know how to "play the game" - and VERY FEW civilians understand properly how to navigate things like the Social Security disability process... If you haven't already, I really do recommend that you get yourself a good attorney to help you.
Having been sick last month when I was supposed to have my pre-hearing meeting with my attorney to discuss and plan for the hearing, we had to do everything this morning in the hour before the hearing. My attorney looked over all my medical records, made an outline of my case with notes to refer to certain records, and then he went over many things that he assumed the judge would ask, for example, how long have I been using the wheel chair? Do I wear my braces when I am at home? Do I drive? Who prepares our meals, does the laundry, etc etc? My husband and I explained that while I can do many things on a good day - like making my son a sandwich - I can never count on my health... and that any kind of activity results in me paying for it with physical pain and any kind of activity generally results in the need to rest, if not sleep, for hours, or even days after the activity. I explained how often I've gotten up and taken a shower, and have been so worn out by showering (even when using a shower chair) -that I then went back to bed and was never able to actually leave the house.
After we discussed several other things, like how often and how I navigate the stairs in our home (I live in a split level house with my parents) - I explained that I avoid the steps as much as possible, and only need to use them when I leave. My bedroom, the kitchen, my son's room, our living room and my bathroom are all on the same level. My husband explained that when I do go downstairs, I often have ended up sleeping there and staying there for several days in a row, which is completely true. By the time we were called in to see the judge, I felt comfortable about what they would ask me on the record.
My Actual Social Security Disability Hearing
After we entered the hearing room and everyone was situated, the judge introduced himself to us. He explained that the session would be recorded and that I'd need to SPEAK "yes" or "no" answers during the hearing, and that you can't nod, gesture or point to things because the microphones obviously won't pick that up.
He introduced me to the court reporter and the occupational specialist and explained what both of them were there to do (self explanatory) and then he asked my attorney to present my case.
The attorney basically explained how old I am, what I did for a living (I was a Sheriff's Deputy, a road patrol police officer) and then when and why I stopped working (I stopped working when pregnant with my son, but I intended to go back to work - unfortunately my illness for worse and worse and I was never able to actually GO back to work). After explaining my condition and all my symptoms, the judge asked me some questions.
What I was asked during the hearing / My Testimony
The judge was very courteous, fair and reasonable - he asked questions that seemed genuine and not at all accusatory, which was good -I didn't feel defensive or as if he didn't believe me. For example, he said that he understood that while I use a wheelchair - I am not completely without the ability to walk. Both my attorney and I explained that if I DO walk, I am a fall-risk (I've suffered multiple falls in the last six months, usually related to the stairs in my house) and that I get tired and suffer from multiple painful dislocations frequently, so i used the wheelchair any time we are shopping, traveling any kind of distance, etc.
The judge asked me questions about my life before my illness, he was respectful about my occupation in law enforcement, about my hobbies and what I generally do on a day to day basis. (I explained that I spend the large portion of my days in bed in my bedroom, that my bed allows me to elevate my feet and take pressure off my low-back and hips) and that I generally watch TV, or watch things online and that I keep my son company while he does his school work and uses the ipad, reads or plays video games. I explained that I spend a good amount of time sleeping during the daytime and that chronic fatigue and severe insomnia have been an ongoing problem.
My attorney asked some questions about depression and anxiety that was noted by ER doctors and one of my physicians years ago, and asked why I'm not currently being treated for either. I wanted it to be clear that my depression is being CAUSED by my condition, it's not a symptom of it. I explained that I am not sitting at home not able to work because I am sad and depressed - that I am depressed BECAUSE I am sitting at home, unable to work. I told them that I loved my career, I was socially active and had a very fulfilling life before getting sick and that not being able to do the majority of the things I once loved is what is causing my depression. I also explained that I have anxiety (the judge asked me to clarify if I meant generalized anxiety, or the kind of anxiety that causes panic attacks and I explained that I meant the latter) - and that my anxiety seemed to be worsening along with my physical symptoms, and then I used my emetaphobia as an example. I explained that I've always had a difficult time dealing with anyone who was ill or vomiting, but that in recent years, I've become fearful of public situations in which someone could get sick - such as flying where someone could become airsick, or keeping my family company at an amusement park, because someone could suffer from motion sickness, and that my panic responses have gotten more severe and the symptoms last longer than ever before - and that I hope to see someone and begin treatment but that I haven't been able to afford to yet.
The Testimony / Statement from the SSI Doctor
One of the major things we had to contend with - one of the main reasons my case was rejected multiple times and even REQUIRED a hearing was because years ago, when I first applied for disability, social security sent me to a psychologist and an orthopedist as part of the process. Both of these doctors regularly do evaluations for SSI and have no practice outside of that area - so basically they are paid to keep people from getting benefits, which I personally feel is completely unfair and horribly dishonest, but regardless, it's something most people who apply have to do, regardless of how many of your OWN doctors see and treat you.
My appointment was a few years back, and I was disgusted and horrified to receive a letter after the appointment with the orthopedist which more or less said that I was perfectly capable of returning to work. It was crucial for my attorney to use the doctor's reports from my actual doctors, as well as my testimony, to show that the SSI doctor's report was not at all accurate.
The judge asked me various questions about the things that doctor had said in his report, as well as questions about the tasks that the doctor had me perform - for example he noted that the SSI doctor said that I "walked across the room, turned, and returned to my seat without aid", which showed that I had no trouble walking.
The judge asked why that differs from what *my doctors* statements, and what I've said, I explained - "The SSI doctor gave me a bunch of tasks to complete during the appointment -when he did, I asked him if I should try to do the tasks if they were causing me pain, or if they caused me dislocations and I had to stop - if I shouldn't attempt to do it... The SSI doctor said that if I didn't do the things he asked, he would just document it in his report. During the exam, he was dictating his "exam" verbally into a recorder - so the first task that he asked me to do (To squat to the ground, down on my toes, and then stand back up) - I told him that I could not do that without dislocating my hips and ankles.
First of all, the SSI doctor ROLLED HIS EYES at me and said "How do you know that if you don't actually try?" (Which i thought was disgusting and incredibly cruel - not to mention unprofessional. I've been living in my body - I'm pretty sure I know what kind of things do and don't cause me pain by this point!!) - but I didn't mention that to the judge.
I felt that it was important to stick to the FACTS, and that if I was going to be believed and be able to REFUTE the things the SSI doctor had documented about the exam, that I should not make any comments about how I FELT about the jerk SSI doctor: I didn't want to include ANY opinions at all. I explained to the judge that when I wasn't able to perform the first task he asked, I told him that I couldn't do it without hurting myself and that the SSI doctor then dictated into his microphone (that was recording his statements for his official report) he said "The patient refused to perform the tasks I requested." I told the judge that I felt like I HAD to attempt to do as many of the tasks as possible, even if they caused me dislocations and pain, and that I did not agree with the doctor's report about my examination because in it, he did not make ANY notes about the actions that caused joint dislocations or pain - for example - when he physically manipulated my joints, he noted that I had an extremely hyper-mobile range of motion, but in doing that, he didn't document that my joints reach a point where they subluxate or dislocate, or, that moving my joints in many directions or past many points caused me severe pain and I had to ask him to stop. I believe that the judge felt that my statements were truthful and I was proud of myself that I was able to leave my anger and frustration completely out of my statements about the SSI doctor.
I feel like my attorney was happy with my testimony, as he told the judge that I didn't REFUSE to do any of the things the SSI doctor asked of me: Instead, I had asked the SSI doctor if I should attempt tasks despite the pain and he said that I should, which resulted in him documenting many things in his report, in which he said that I'd been able to do them, but that it wasn't an accurate representation of my abilities because he didn't make any note about the what caused me pain, what caused dislocations, what tasks I had to stop, and which of the tasks had a lasting impact on me for the rest of that day or the days that followed. The judge seemed pretty convinced, and in the end, it appeared that he also did not agree with anything the SSI doctor said.
I felt good that I was able to convey all that without actually saying anything disparaging about the SSI Doctor (as much as I would have liked to). In reality, his staff member was extremely rude to me, the doctor jimself was very short with me - he was physically forceful and when he was manipulating my joints during the exam, he noticed and even cringed, that my hips, knees and ankles popped out of place in his hands, but then he failed to make any notes about them doing it! He did make notes that I had "More than a normal range of motion" - but he made it sound like I am merely FLEXIBLE, and his report read as if my joints being "extremely hyper mobile" was a GOOD thing, rather than it being a *MAJOR* health problem.
I told the judge that I felt that my only options were either to force myself to suffer through tasks that caused me pain, or to appear uncooperative because the doctor would document that I "refused to do the test" - I am not the type of person to REFUSE to do things that are asked of me, especially in an official capacity, and I wanted the social security doctor to accurately see my health issued. I wanted to do as many things that I possibly could in order to demonstrate the problems that I was suffering from. I told the judge that I didn't understand until I received the report, that the SSI doctor's opinion would misrepresent my actual situation and my condition so drastically.
In reality - the SSI doctor made broad, sweeping statements like "The applicant drove herself to the appointment, and entered the building without assistance or the use of any mobility aids" - but he didn't document that I was told that missing the appointment would result in my claim automatically being dismissed, and that there was no one home or able to drive me. He didn't mention that I lived a mere six minutes from the doctor's office either. He didn't mention that I didn't bring my wheelchair because I can't push myself in it - or that I can't use crutches or a cane because it causes my wrists and shoulders to dislocate. He didn't say that I used the car the door for support, the railing to ascend the handicapped ramp, that I had a significant limp in walking the nine feet to the front door, Or that I entered and *immediately* sat, uncomfortably, where I waited to see the doctor.
Of course no one had documented what REALLY happened... no one documented that I asked the SSI doctor's assistant to bring me the clipboards and forms at my seat because I couldn't stand up repeatedly and walk back and forth to the counter, or that she'd instead said "just take your time" and left them sitting on the counter, refusing to walk them to me. She sure as hell didn't document that I couldn't stand at the counter to fill them out or that she got aggravated with me for taking so long to fill out the thick stack of forms they gave me because my wrists and fingers were swelling and in pain. No one warns you that they will be asking you to re-write nearly a complete copy of your ENTIRE disability application ALL OVER AGAIN. They needed to know ALL of my doctors, all of my medications, all of my conditions, all of my symptoms - ALL things that were IN my SSI report already (which supposedly this doctor HAD...) and which I had DICTATED in the first place, rather than hand-writing them, specifically because I can't do that kind of thing anymore. But I digress.
The SSI doctor also didn't document that his assistant got aggravated with me for holding up several other patients who were waiting for her and the doctor, because the doctor couldn't see me until ALL of the paperwork was filled out. They had asked me to show up TEN MINUTES before my appointment, but ten minutes is NOT enough time for me to fill out tons and tons of paperwork that causes me a severe amount of pain. They didn't document that she stood beside her desk, with her hands on her hips, staring at me, rolling her eyes and SIGHING audibly, because I was taking forever and they told me that I couldn't take the forms home to complete them later, nor could I see the doctor and THEN finish filling out the forms. Nope - none of that was mentioned in his report - his report made me sound like I was TOTALLY fine and healthy.
I explained that when the SSI doctor asked me to do tasks during his exam, he would make notes, for example, that I was "able to pick up a pen, write my name, and then put the pen back down" - but that didn't mean that he documented that I dislocated my wrist and several fingers DOING the task. I also told the judge that even the things that I could do would cause my hand and wrist to hurt or swell, and that it remained painful and swollen for the next few days. I also told him that I went home from that exam exhausted, and that I fell asleep and remained asleep until the next evening.
Testifying about My Medical Issues
You do have to prepare yourself to be asked, in front of a roomful of people, about every detail of your medical history and your life. If it brings you to tears to talk about how you can't take a shower until your husband is able to help you wash your hair, or you think it's going to bring you to tears to talk about how you no longer have any friends - be prepared and grab a tissue. They (wisely) have a box sitting on the table. I was proud of myself, because often in nervous situations, my nerves get the better of me and tears well up, and my voice waivers -even if I'm not sad. It was difficult to talk about my bladder problems, my GI issues, my depression and anxiety, my severe phobias and how I basically have no life - I'm not going to try to say that it wasn't demoralizing and humiliating, but I tried to keep my focus on WHY we are there. It's not therapy, it's a hearing to determine if I can work again, and I tried to keep myself mentally fixated on that task. I'm not telling you not to go in there and cry - but you do want to do your best to remain calm, factual and not to get off-task or talk about things that don't matter to the judge. I did my best not to talk about the financial strain of having no income whatsover for five years, or how upsetting it is to be treated like crap by so many doctors over the years - those things just have no place in the hearing for social security benefits.
I had to explain to the judge (as my attorney asked on the record) that my dislocations and subluxations aren't DRASTIC, dramatic events that everyone around me notices. I explained that they are sudden, painful, and unpreventable and they happen as often as a few dozen times a day often from very minor activity, including things like rolling over in my sleep, or adjusting the way i'm sitting. I explained that some joints dislocate or at least subluxate EVERY time I move them (like my right shoulder that slips out of the socket every time I lift my arm over my head)- I explained that yes, at times, my joints pop loudly when they dislocate, or sometimes my body moves in a way that its obvious to anyone who is looking directly at it, that something has happened. I had to explain that normally my joints slide out and go back into place quietly and without a great deal of force - that usually I simply shift my weight, or re-positioning my body or applying some kind of force, and I had to explain that despite it being painful, I don't scream out or announce to everyone around me, every time something dislocates, so no one would really know when it's happening unless they are around me a lot or if I'm surprised by a sharply painful dislocation.
I explained, "For example, just while I've been speaking to you, I had to manipulate my two fingers on my right hand back into place because they dislocated when I opened and then closed my hand." The judge looked surprised, but he didn't look as if he didn't believe me, which was comforting.
The attorney asked questions about what happens to my body when I suffer a dislocation - I explained that in the immediate, a dislocation usually causes pain, but how much pain and for how long the pain lasts REALLY depends on the joint(s), and that some dislocations (especially my hips) cause muscle spams that travel across my lower back, near my spinal column, and even across my shoulders or down my legs. I explained that some of my joints that dislocate more frequently than others (my hips, knees, wrists, fingers) and that those also go back in place more easily and sometimes with very little effort, but putting the joint BACK IN often causes me more pain than the original dislocation itself.
Fortunately, my own doctors' notes did focus on the pain I had been experiencing over the five years since my diagnoses, including documenting the pain and swelling in my right thumb, fingers, wrist and hand, and my attorney made sure to point that out, as well as noting to the judge that I am right handed. I explained that we had temporary ring-splints made at one time, but that permanent ones are very expensive and I have not been able to afford to get them.
The entire hearing lasted about an hour, and other than the above, the judge asked some more specific questions about the history of issues with my bladder (during which I was able to explain my doctors theory on how my year-long treatment with powerful antibiotics levoquin and ciprofloxin had done permanent tendon damage and that AFTER my treatment, a black-box warning had been added that those medications should never be used in people with joint damage like connective tissue disorder and arthritis.
Finally, the judge asked if there was anything else about my work history, my living situation or my health that I wanted to add to the record, and I took that opportunity to say "Despite the fact that my attorney and I had already discussed that I suffered from both insomnia and chronic fatigue, I wanted to express the severity of both of those conditions."
I explained that I have tried many therapies and treatments under the supervision of my doctors, including many different medications in order to better regulate my sleeping patterns, the amount and quality of the sleep I get, or to try to prevent the sudden onset of severe fatigue that frequently hits me - but that we have been unsuccessful in finding anything that works, and those particular symptoms are as bad, if not worse than the ongoing chronic pain.
I wanted to be sure to explain my situation because the reality is, even if I COULD suffer through some kind of desk job with the pain that i deal with, I would NEVER be able to actually get and remain employed, because I would miss SO damn much work. As soon as the fatigue comes on, there's NO way for me to concentrate - I have NO choice but to lay down and sleep right then. My focus and attention are non-existent as soon as the fatigue hits me. It's sudden, I can't control it, and even getting plenty of sleep or taking medication to combat it, doesn't keep it from happening.
In the End and What Happens Next...
The reality is, regardless of what happens - there is NO way I will ever be able to work again unless some magical solution comes along that treats the severity of my fatigue, the severe insomnia that's plagued me for five years, AND the joint dislocations and pain I deal with every day. As my husband and I discussed on the way home - there's no point in stressing out endlessly about the hearing and what is going to happen because it's out of my hands, and even if it goes the WORST possible way - there's not a damn thing I could have done differently.
I wanted the judge to understand how much that impacts every single day of my life, and I was glad that I was able to do that at the end of the hearing. In the end, I felt like the judge was polite, professional, and (ironic as it is) - I didn't feel like he was judging me. That's kind of funny, isn't it? I really didn't feel like he was eyeing me up and down, judging weather or not I was being truthful, or accusing me of exaggerating - for that - he was more kind, polite and professional than 90% of the doctors I've seen in the last ten years.
I really REALLY hope that everything really did go well. I had plenty of records from every hospital and doctor I've seen, I even included the documents from the oral surgeon that showed that I had to have all my teeth pulled because the Ehlers Danlos Syndrome has impacted my whole body. I felt good when we left the hearing (well, okay, my left wrist was throbbing, my fingers were white from reynauds, my neck and back hurt from sitting up in the wheelchair, and I was simultaneously buzzed from the excess adrenaline and exhausted despite having actually slept from 7pm the night before to 7am this morning) - but in terms of the hearing itself, I felt like I'd done the best I possibly could, without being too verbose or without offering anything that I regretted saying. I didn't exaggerate anything, I was honest, and I felt like I came across that way. When the attorney told me outside that my testimony was "perfect" and that "he felt like everything went well and would be approved" - I felt even better.
Now we start what I HOPE is the final wait... the wait to get the actual determination letter.
There are four ways a Social Security Disability Hearing can go:
-I can be rejected and told I can return to work - and if the attorney feels that there was a violation of the law in the way the judge made his determination, he can appeal it.
-I can be rejected and if there's no violation in the judge's actions, there's nothing else the attorney can do, and we're screwed. I can never work again, and I also won't have any income at all from social security.
-I can be approved, but only partially, because they could find that they don't have enough evidence to go all the way back to the date that my doctors and I said that I became disabled (January 2011)
-I can be approved, and will receive disability payments backdated to the time of my application. Obviously, this is the one we are REALLY hoping happens.
We should know within 90 days, when a letter will arrive at my attorney's office and also at my home. After that, I'm not sure how long it actually takes for them to get a check out (assuming I am approved) - but it's been FOUR YEARS since this started, and even longer that I haven't been able to work... so a little while longer shouldn't make any real difference. I am just going to keep telling myself that until we hear back, because that's all I can really do.
Your thoughts are really appreciated- of course this is stressful no matter what I TRY to focus on, and our family REALLY really needs this. There are SO many things that I could do to improve our lives and my situation -starting with dentures and ring-splints for my fingers, that I can't afford to do without this income, so we REALLY need it to come through.
My husband and I have been married for five years- and before that we were best friends for sixteen years. It's probably safe to say that we know each other about as well as any two people can. You would think that with such a strong foundation for our relationship, one thing that we WOULDN'T have any trouble with, after all that time, would be having a good time together. Unfortunately, like many people who have been in a relationship for awhile (and especially something that's extremely common with parents of young kids like we are!) - fun had fallen off of the top of our priority list quite a while ago.
When we were younger (and back when we were just friends) - we did all kinds of things together. Festivals, renaissance festivals, amusement parks, concerts, bowling, street faires, - you name it- we were all over the place at all hours of the day and night. We never had a hard time finding things to do together, but even as we settled into a committed relationship and parenthood, we still enjoyed many of the same kinds of things, they were just altered by our desire to take our kid along with us (and because we have such a laid-back kid, we have taken him nearly everywhere we've gone right from the time he joined our family!). But more than familiarity and parenthood - one thing VASTLY affected our free fun-time together: My becoming disabled by Ehlers-Danlos Syndrome.
Yesterday, we attempted to have an evening together that was not much unlike things we've done hundreds of times in the past - we made some plans just a few days in advance, we planned to squeeze in some fun-time around my husband's crazy work schedule (he works for himself, so he doesn't have a 9-5 schedule) and we threw together a plan, despite my not feeling well and not having slept at all the night before. It was the first time we'd decided to do something without our son (the show that we were going to see was for adults) - and the plan involved my parking my car, walking to a bus stop, riding a bus for two hours up to New York City, where my husband would pick me up and we'd head to the show he wanted to see.
Unfortunately - everything about our date-night went very *VERY* wrong. It started small - my husband got held up at his last job. My husband is one of those people who thinks that he can do ANYTHING no matter how ridiculously short a chunk of time he has, and as a result, he's always running late, or telling me he'll be "right home" and showing up six hours later. He doesn't INTEND to do it - but he's the world's worst estimator of time. So naturally, he thought he could finish his job, get to the subway, rush to where I would be getting off the bus, and not have me waiting long... but that didn't happen. (and by the way, there's no cell-service on the subway). The other problem was that instead of communicating with me - or basing his plans around the bus-schedule, my husband tried tracking our bus real-time on their app, which showed him my bus was running really late. We arrived at 6:15, and he thought I wouldn't be there until 7.
When my bus pulled up to a dark street in the middle of Manhatten, I was exhausted and cold, and tired - and I REALLY had to pee. I've got interstitial cystitis, which for those of you who are fortunate enough NOT to, it's like having a permanent UTI. I've had the symptoms of a kidney infection for several weeks, so when I say I had to pee- I mean, I REALLY was uncomfortable. My husband knows how I feel about public restrooms (Saying I'm "not a fan" is a severe understatement) - but I guess he didn't really think about the fact that I'd never use a bathroom on a moving bus. Or, that when the bus stopped and let us off, someone would be in there anyway - and we would be shoo'd off the bus. Everyone who poured off the bus with me disappeared in minutes, getting picked up and walking off into the city. There I was - with an armload of things he'd told me to bring - my big body pillow for the ride(s), my heavier coat, a snack I'd packed... I was pretty much stuck there where the bus let off, because I am typically in a wheelchair any time I'm walking more than a block or two. My hips/knees and ankles can't handle long hauls - and two blocks is a long haul these days - so when I got off that bus, very uncomfortable, and I start calling to see where he is - and I get no answer, you can see how one might panic.
By the time he texted to say he was on the subway en-route, I was already trying to figure out how to get back on the bus that had just arrived, that was heading back home. A two hour nap on the bus (after finally getting to pee) seemed like a fine alternative to standing on a cold,dark city street alone. Unfortunately- the driver could only take cash, and you couldn't buy a bus ticket online or over the phone using a credit card close to the bus's departure. By the time my husband came around the corner to "pick me up"- a full FORTY MINUTES after the bus had dropped me off - I was LIVID. First of all, I had to pee so badly that I was in panic-mode. There were no businesses in sight, no cabs anywhere near where we were dropped off, just the occasional person walking by from god-knows-where. There was no ATM within a mile and a half (said my cell) and when my husband finally got there, only to tell me that "picking me up" meant that he was going to come GET me, and we'd walk a few blocks to the subway... I was beyond angry. There were ugly words exchanged - and with no cabs patrolling- I had literally NO CHOICE but to speed-limp almost five blocks in blind-panic trying to get to the subway, so that we could get to the next stop (Times Square) where he ASSURED me, there WOULD BE a bathroom. I was DYING.
I still don't know how I made it - because that "short walk" that was "just around the corner" involved limping, in so much pain, easily a MILE in total - not to mention up and down over a DOZEN flights of stairs, plus a panic-attack inducing ride down the world's tallest escalator.
It was 7:39 when I finally got to the McDonald's in Times Square...
...where I found out that the women's bathroom was UP ANOTHER FLIGHT OF STAIRS.
The fact that I made it into the only working stall out of three after all of that, without having peed myself during the entire miserable hour it took to get there- was a miracle in and of itself. I was mortified the entire time, trying to limp my way there, while focused on nothing more than my pelvic floor muscles. I was so tensed up and petrified - it's no wonder I was in so much pain.
When I came out of the bathroom, I collapsed into a seat at a table, that would have otherwise been a beautiful view out into the heart of Times Square. I promptly broke down, sobbing hysterically. It was a mixture of exhaustion, being in much pain that I couldn't see straight, and the totality of the situation - I was SO angry, frustrated, hurt, and in so much pain that I couldn't do anything but sit there and cry for over an hour. My husband first waited downstairs, but I wasn't walking anywhere at that point - I don't need to tell you that we didn't make it to the show my husband had wanted to see.
After taking the maximum dose of pain medication - meds for the cystitis, and trying to calm myself down (because being angry and upset wasn't helping my pain) - it still took hours before I was willing to go anywhere. We got home at four o-clock in the morning, and I spent my entire day tossing and turning, trying to focus on anything other than the blinding pain I've been in from severely over-doing it last night. I know that my husband was really apologetic, and that he was listening when I explained on the way home just how seriously I was hurting and how unfair it was to put me through that - but I knew that this could never happen again.
When I finally crawled out of bed this evening - I had another thing to add to the list of regrets about last night. I don't WANT to give up on our having spontaneous fun. I don't want to give up doing "crazy" things. So how do you go about making sure that date-night, or any planned activity, doesn't end up going completely awry and landing you (or your disabled significant other, if you're the able-bodied one in the relationship) - recovering in bed for days afterwards? I decided to put together some tips for taking your significant other into consideration when you want to do something together.
One thing is for sure - in almost all aspects of life, disabled people everywhere just wanted to be treated like ANYBODY ELSE. But dating someone disabled is the one time when you really SHOULD consider (and plan for) your significant other NOT being "just like everyone else" - because that's how you avoid a disaster like last night was for us. Here's a few tips for having a fun, interesting and most importantly - a considerate time with your disabled significant other.
First and foremost - plan to do things you know that the other person can handle. You wouldn't take someone who can't handle long periods of time in the heat to an outdoor summer concert. If you're new to the relationship, or if your significant other's health is constantly changing, this means communicating with them about how they are feeling and what they can handle RIGHT THEN. Yes, it means it's difficult to plan some things way in advance, but it also means that you're more likely to end up not having to cancel plans entirely and that you'll both get to enjoy them. So if you ARE going to plan something far in advance - like traveling somewhere - make sure you check into accommodations in case things change. If you're planning on going to another city and visiting a zoo - what can you do if your significant other is having trouble waking - or if the weather is way hotter than you'd originally planned for. Maybe you could have a back-up plan, or maybe you can make minor adjustments to your plans (like renting a scooter or wheelchair!)
Next - keep in mind ALL of the disabled person's special requirements. Does she need to have quick and regular access to a rest-room? If your significant other has to take medications at certain times, make sure she's packed them. If she needs a drink to take those meds - or has to eat before taking them, then plan for that. (Don't find yourself somewhere where you have no access to food for hours at a time!) - this can mean simply planning ahead and packing snacks, or stopping to get a drink whenever you have a chance, but it can also mean the difference between a small inconvenience and both of you having a miserable time. Does walking long distances or standing for long periods of time cause problems? Then plan on bringing a wheelchair - you can rent one if you're on vacation or visiting most theme parks, zoos, malls and other popular locations. If you're in a long-term relationship, it may be a great idea to have a serious talk about how buying a wheelchair could positively benefit the both of you and your ability to do far more things without costing one of you days of unnecessary pain!
Make sure - as the able-bodied person, you take into account how things like being late will affect the disabled person. Let's face it - we are all late now and again - and disabled people are late more than most. But when a disabled person DOES have the opportunity to do something special, and they get up, get dressed and are prepared to get out of the house, and then they are kept waiting for a long time, there's a good chance that those spent-spoons are going to catch up with them and you're going to lose your window of time. For many of us with chronic fatigue syndrome, the seriousness of suddenly being overcome with exhaustion is all-encompassing. If I'm up and moving, and then suddenly find myself waiting around for long periods - my energy can QUICKLY be zapped and that's the end of my day. If you make plans with someone who is living with chronic-illness, plan to be on-time, even if they are running late. Plan for things like traffic (get whereever you need to be AHEAD of time, rather than taking the chances you're going to run late) and make sure that if you're picking someone up or meeting someone -that you know exactly where you're going and that you are there when you are meant to. These days, apps like Google tell you how long your travel will be (WITH TRAFFIC!) - so plug in locations even if you know WHERE you're going - because it will tell you how long you're going to take getting there!
Have a back-up plan in place for EVERYTHING. One of the things I pointed out to my husband after our disastrous date night was the fact that he should have known I couldn't handle getting off the bus and walking a long distance. If he knew that he wasn't picking me up in his truck - and especially that he was going to be late - he could have called ahead to have a cab meet me when the bus arrived. This would have meant that I didn't have to sit anywhere, waiting, AND that I didn't have to walk anywhere.
In your case- this means taking a coat in case it's suddenly cold, packing an umbrella, extra meds - it means packing a bag to carry on the wheelchair in case you need to take things along with you. It means planning on something indoors in the event that it's too hot or too cold to do whatever outdoor activity you'd wasted to do.
When it comes to food - keep in mind that while everyone needs nutrition- it's NOT the same for everyone.
My husband has known me for a long time -and he's always known that if I get hungry, keeping me waiting is NOT a good idea. I get cranky and miserable VERY quickly once my blood sugar starts to drop, so he's planned around that for most of our friendship, long before we were a couple. But now that I'm living with chronic illness - I have other issues with food that are just as important, for example, it's important to ask about the contents of food before I eat things and find out the hard way that they contained an allergen (I'm allergic to peppers and black pepper, which fortunately won't kill me if I eat a little - but if I eat enough, it'll make for a really miserable day if I don't get benedryl quick.)- others aren't so lucky and running into an allergen or a food that triggers serious GI issues can impact the rest of your day and turn into an ER trip.
Make sure that if you want to take a disabled person to a new restaurant - ask ahead about their dietary restrictions, and make sure you know what's normal - how often and how much do they eat? If a person has a feeding tube or issues with Gastroparesis - planning a date around food might be better avoided, but you won't know if you don't ask! Some of us are grazers who go long period without eating, or hardly ever eat much of anything, so a date based around checking out a food-festival might not be the best idea. Other folks might love to eat -but then need a long period of time to recover afterwards, so check into what's normal. You can always have a nice meal - then go sit somewhere calm and relaxing for a time, and THEN move on to do something else - but knowing what the person NORMALLY does after they eat. And keep in mind - even if eating isn't part of your plans for the evening, everyone's bathroom habits vary widely, and some of us are VERY particular about where and when we'll use the bathroom. One of the biggest things that I was angry about after our disastrous date-night, was the fact that my husband had the nerve at one point, to say, "Why didn't you just use the bathroom on the bus on the way down?!" - this is a man that's known me over 20 years. He knows how I feel about public restrooms- and he SHOULD have kept that in mind.
Don't give up on doing fun things entirely - you can still probably do ANY of the things you've ever wanted to do, even if you have to take MORE time to do them, or to make special accommodations in order to be able to enjoy them. After all - I will go back to NY. I will even go back by bus and meet him there another time - but next time, I'm not going anywhere without my wheelchair, and he better be there when I get there (or have a cab waiting to meet me!) You may not be able to handle going to the renaissance fair in August when it's a hundred degrees out - but maybe you CAN enjoy it in October when the weather is cooler and more comfortable. More importantly than anything - if part of your special plans involves something that you're going to enjoy MORE than the person who's putting their entire body - their energy, their pain levels, etc all on the line for you - please be sure to go above and beyond. Make sure you take into account every possible outcome - that you plan for delays, that you look into schedules, the routes you'll take, the weather, the traffic - and that you make sure accommodations are possible that will make all of these things navigable for your loved one.
Last night, I took a bus to NY to see a show that my husband really wanted to see - and he didn't plan ahead for just how badly our night would be ruined by having me wait around, alone, for a long time (in the cold), and then having to walk a long distance (and a lot of stairs) just to get to a bathroom - and our night ended in total disaster. I felt bad that he didn't get to see the show that he wanted to see - but maybe - just maybe - next time he'll show up with flowers and a cab, instead of running forty minutes late and expecting me to hike all over the city to get where we needed to go. I really hope we get to spend some time together doing something for just the two of us again soon - but I also hope that we never have another night like last night - because it was pretty awful, and if it had been at the BEGINNING of our relationship rather than five years in - a night that disastrous could have easily been a lot more than just a bad memory and a few days of recovering physically.
Best of luck on your future dates and having a good time with your friends and significant others. If you keep a person's needs in the forefront of your mind, you'll never go wrong. The best foundation for a relationship is knowing that the other person really cares about you and what will make you happy - so keeping in mind how to make their life easier and more enjoyable (and less painful!) - it's always going to be appreciated and make for a better relationship.
Despite our night being a disaster, things turned out okay.
Despite our awful night - and a long time of sitting at the McDonalds (waiting and hoping my meds would kick in and allow me to be in a little less pain - no such luck) - eventually my husband went and got me a much more comforable pair of shoes, and some food, and called a cab. We took that back to Queens, where his truck was, and then we took the long (very painful) drive home. I've been recovering at home all day. :-(
Is your pain not under control?
Six years ago, mine wasn't: Not even a little, and I very seriously wanted to die. Not because I was depressed - or even unhappy with my life - I was simply in pain, non-stop, around the clock, and I couldn't take it any more.
I want to share my tips for how I got my doctor(s) to take me seriously and to stop pushing absurd amounts of Tylenol, Advil, Aleve, Aspirin, rest, a better diet, weight loss (I wasn't even over weight), PT after more PT, and thier CONTINUOUS ignoring of my worsening 10/10 pain by throwing more and more referrals to specialist doctors (ortho, rheumatologist, neurologist, endocrinology, etc etc etc) who likewise, didn't know how to help me get control of my pain.
I hope you have a chance to read this if this applies to you, and I hope it changes your life like it changed mine because my pain is now a 3-5 MOST OF THE TIME.
I was diagnosed with EDS at thirty years old, immediately following a pregnancy. The hormones had triggered what HAD BEEN a lifetime of mild symptoms and I spiraled out of control thanks to misdiagnosis and the use of IV Levoquin & ciprofloxin over ten times in one year.
That first year, with a newborn, I was in and out of the hospital nonstop. First it was mono, then recurrent kidney infections, my pain was a worsening 10/10 around the clock and when my son was seven months old, I was suicidal from the hopelessness and the constant hellish torture of the pain.
I had survived a pregnancy born out of domestic violence and sexual assault. I gave up my beloved law enforcement career and my beautiful home and all my independence to move home and in with my parents - instead of the adoption id planned, my best friend if sixteen years suggested we keep the baby and get married and despite all this, I'd never been more content or happier with my life... But I told my husband I wanted to die... Because even though my life *situation* had NEVER BEEN Happier and more fulfilling... I was in CONSTANT HELLISH PAIN.
"I cant live like this," I told him. "I know," he agreed.
My primary care had me on 10mg vicodin once or twice a day, but it wasn't doing nearly anything. A half hour after the pill was in my system, nothing. I was taking benadryl around the clock to try to sleep through some of my pain. It wasn't working.
I was having nonstop intestinal bleeding from the acetaminophen in the vicodin, the hospital pinpointed it was the cause. Each new symptom (reynauds, the nerve pain, Mast cell rashes, arthritic pain all over, now tendon ruptures from the antibiotics and the interstitial cystitis (that WASN'T recurring kidney infections)...
Finally, I went back to my primary care doctor and laid it on the line.
I told him, "Look, I understand that it's difficult for you to prescribe pain medication long term and in any quantity because of the monitoring and concerns for your license, but here's my reality. I'm in pain around the clock that's not being controlled and its affecting every part of my life. "
I then handed him a *pain journal* I'd kept FLAWLESSLY vigilantly for eight plus weeks. I'd written down everything... My overall "scale of ten" pain score (every few hours), along with a second score for my ACUTE pain. One score for my allover body condition and a second score for the acute pain: so say I just reached for a book and my shoulder dislocated.
Body-wide I may be feeling like a 5, but now my shoulder is a 9 momentarily. I logged EVERY subluxation, every dislocation and how much each one hurt and for how long. I documented how long the acute pain lasted from each injury...in and out of the hospital, I kept it up.
I tracked every single accommodation i made to cope with my eds. Every nap I was forced to take because I couldn't keep my eyes open... Every time I sat down on the floor waiting in line because I couldn't hold the gallon of milk anymore... Every meal I skipped because I was STARVING ...but no one was home to feed me, each time I just couldn't pull myself together to make something and fell asleep STARVING.
I gave my doctor that pain journal and asked him to go through ANY GIVEN DAY with me, line by line. As he read it, he was forced to CLEARLY see, in front of him, in black and white, just how serious my condition had become. He could SEE how much my pain was affecting every single part of my life ... I wasn't sleeping, I couldn't eat, I was constantly hungry and nauseous and gaining weight despite bordering on starvation....
And I spelled it out for him; "I realize there's only so much you can do but what you CAN do is write me a referral and a reference to a pain management physician. Someone who *can* attempt to help me, weather its different medication, additional medications, injections, customized bracing, nerve blocks, you name it... But I can't live like this anymore and I need YOUR help. I need that referral so that I can get the treatment I need to get this condition under control."
I could see that I had him, but I didn't let up: "My entire life is out of control and as a patient, it's right here in your patients bill of rights statement (I pointed to the ACTUAL handout I'd gotten from his office manager) - it says that I have a right to your respect and *proper pain management protocol* and since I realize your hands are tied in regards to what *you* can do for my pain, I need that referral. I need you to advocate for me, to help me find a doctor that you can explain the specifics of my condition to, and to whom you can explain how long you've been treating me and how this condition has taken over my entire life."
In that moment, my entire life changed.
Forty eight hours later (after a minor hiccup, bc the first "pain management" office I was sent to "didn't do medical management" - so I would add to my advice to request a doctor who Does include prescriptions in thier possible care so that you have ALL available options)... But anyway... within 48 hrs I was sitting in a different office, again in tears, with that same pain journal in hand... But this time, it was **happy tears**.
(I also have to wedge in this suggestion here ... No matter how independent you are, please take someone with you who sees your daily struggles and can and will advocate WITH you that will attest to your struggles and how responsible you are with mediation and with wearing your braces and doing your p/t. It helps if this is the person you ask to help when you can't shower, the person who has to make your food when you can't and so on.
They are VERY helpful in getting your doctor's eyes opened. Let him or her talk, in a concise way, about watching your struggle. The doctors need to hear this from someone else. Sadly, if you're female, it often REALLY helps to hear it from your husband, boyfriend, brother or dad. It's not fair but it is true that many doctors listen to men and DON'T take women at their word.)
I was written prescriptions for an around the clock, slow, long-acting 60 MG morphine (bear in mind you'll need to be VERY open minded about what is prescribed. Do NOT shoot down medications unless you are LEGITIMATELY ALLERGIC. If you have a reaction, report it immediately - but don't INSIST on certain prescriptions or you WILL be flagged as "drug seeking")
I say this bc in the hospital prior, morphine never helped me in acute situations, but I tried it anyway. After THREE weeks of using the long acting KIND, it finally started to be processed by my body and it began to lay down a pain relief that dropped my GENERAL pain level to UNDER A FIVE around the clock!
I was also PRESCRIBED (Same day, same doctor) SIX 15mg oxycodone per day for breakthrough pain (later changed to 4mg dilaudid) which I've slowly voluntarily decreased my use of... Beware though, breakthrough medications effectiveness slows down RAPIDLY... You'll learn to only take breakthrough or instant release meds as ABSOLUTELY necessary.)
I was enrolled in the medical marijuana program a year later, after we'd tried (with no success) every muscle relaxer in existence...
That pain journal CHANGED MY LIFE.
So please, consider this advice:
- Be firm but understanding with your doctor.
- Try to keep the same physician long term, but if they absolutely refuse to refer you to someone who WILL see you specifically for your pain (even after pointing out that thier own patients bill of rights insists that they WILL treat your pain reasonably and responsibly) - you may have to move on.
- If you fire your doctor, do so PROFESSIONALLY and get your records to take with you. You can't just walk into a new doctor and ask for strong pain medications.
- You'll need to build a rapport and to be seen over a period of time to establish a relationship with new doctors, respect that.
- Lastly, try to be UP FRONT, honest, and as calm and rational as possible. Don't use your primary care or your pain doctor as your therapist. If you're depressed, have anxiety, yes, mention it, but please seek the KIND of doctor. Keep your medical and mental health care to the appropriate physicians when possible. (Let's face it: its not good to appear mentally unstable in front of someone you hope will prescribe strong pain killers- likewise, you SHOULD seek that support from a physician who CAN help you with mental illness)
And the two MOST IMPORTANT TIPS:
1) BE OPEN MINDED TO TREATMENT OPTIONS.
You should be willing to try everything they suggest if you want your doctor to take YOUR suggestions. Doc wants you to try compound creams? Leg braces? Water-based physical therapy? Fine. But keep your pain journal and insist they keep treating you until your pain is MANAGED reasonably. And if something makes it worse or doesn't help, give it a fair shot before putting your foot down.
AND 2) Have REALISTIC pain management goals;
You will never not be in pain... But setting the goal to be able to get yourself food and drink 90%of the time when you need it, to have pain levels below a 5 at least 50% of the time, to be able to get out of bed in under three hours OR to be able to shower unassisted (even if it means using a shower chair) ... That's not at all unreasonable.
You MAY have to do things that don't feel fair or right; Like being drug tested and paying for it- every single month. Like signing a contract agreeing to random pill counts and agreeing to call your pain management office before accepting emergency room treatment for your pain. You will have to use one pharmacy until the end of time, and not accept ANY controlled substance from your dentist from now on... That kind of thing.
But if you can get your pain under control... It's all worth it.
I want everyone with EDS to have access to the pain control options I have now. I want everyone to have the support I had in getting here but I can't do for you what my husband did for me.
I have long acting and immediate release medications. I have the capacity to be put out-of-my-mind on those WORST days when my hip has been out more than its been in and I can't breathe from the pain. I can force myself to sleep thanks to medical marijuana and the ativan prior to dental work (since the novacain doesn't work) helps me cope. I have a shower chair, a wheel chair, a window ac in my bedroom even when the rest of the house is not on, I have double KFOS (knee foot ankle supports), hip supports, ring splints, a great masseuse and a chiropractor I swear by at least once a month... You name it.
I don't have 10/10 untreated pain around the clock anymore, but I did once... And I did something about it.
You can too, I promise, there IS help out there. Just don't give up.
Thank you for taking moment to read my thoughts from tonight.... I know chronic pain isn't fun to think about, but I ask that you take just a moment to hear a few thoughts.
I hope that if you're suffering with chronic pain, that this blog will help you share how you are feeling with those that don't understand. And if you don't have live in pain, that this may open your eyes to a situation you didn't know existed.
Your comments are welcome & encouraged.
Do you know what living with chronic pain is like?
I have to ask - have you ever woken up from the pain of your hip having been dislocated for hours? Has the weight of carrying a magazine or holding a package of markers ever dislocated your wrist? Have you ever been so exhausted by taking a shower that you spent the rest of the day recovering? Have you ever had to stop in the middle of signing your name because your fingers dislocated from the pressure of the pen? Have you ever taken a step only to hear a sickening snap, unsure if something broke this time - or if its just 'out again'? Chronic pain isn't a competition - maybe you live with migraines or have suffered from a serious car accident. Regardless of the cause - living with pain that doesn't go away is more than most people can wrap their minds around.
Chronic Pain and how we're treated by Medical "Professionals"...
I want to talk for a moment about how chronic pain is TREATED and how badly those of us who seek treatment are treated by medical staff. I would like to talk about how you can go into any doctor's office and you have 100% of the staff's attention and concern until you mention ONE thing - that PAIN that just won't go away.
Let me be clear - I have never been diagnosed nor have I been suspected of suffering from mental illness. I was a police officer (back in my health) who had a respectable career which was never marred or disgraced. I've never been arrested, never been in any real trouble of any kind, and I have never abused or misused prescription medications - my experience with "partying" was limited to trying marijuana a handful of times at 20 years old when I worked at the Renaissance Faire. I knew early on that I wanted to work in law enforcement, and I took that seriously. And even though years later, I take powerful opiate medication EVERY day - I have to be clear: I am no more addicted to the pain medication that I am DEPENDANT upon than a diabetic is "addicted" to the insulin they take.
People like myself, living with severe chronic pain KNOW that you emergency room nurses, ER doctors and our own family physicians are so cynical and burnt out that by default you don't believe ANYONE who leads off complaining of pain. We've been talked to like the scum of the earth while writhing with pain worse than you've likely ever experienced. Short of major surgery, days of undiagnosed appendicitis or a compound fracture - it's not likely you've ever had to answer questions while unable to complete your thoughts because of pain.
We see the looks you give us from behind the pharmacy counter - the suspicion, the disgust. We hear your whispers from beyond the curtain. We've heard it from our own family members or friends, not to mention every medical staff member who's asked what medications we take. If, god forbid, someone HAS prescribed any controlled substance, that questions is immediately followed by a disbelieving "but WHY?". AT the first mention of ANY opioid (unless we're also dying of cancer) the suspicion abounds and our treatment immediately disintegrates. We're treated as if we're criminals, addicts, common junkies... and we hear you. We see you. And we'd like to know- what would YOUR solution be to the pain we live with? For whom do you think these medications were created? How exactly would YOU do it better and would you be willing to take our pain for 30, 90, 365 days in order to prove how you could handle it with just ice packs and ibuprophen?
My Pain Management.
Yes. I do take morphine. Every day - for five years, once a month, I drag myself out of the house regardless of how I feel to sit through an appointment that can last up to five hours. I'm subjected to a urine test monthly - to make sure I'm taking the prescribed medication and not selling it. They also make sure I'm not taking anything they haven't prescribed. And I have to PAY for the indignity of not being trusted - did you know that?
Sure; The bottle says every 12 hours, but I'm human... occasionally I'm lucky enough to sleep too long, or I get mentally busy and I forget- and then I get to feel not only the pain. The pain that comes rolling in, in waves, but I also get to feel that distinctive sickness...I get to experience the SUDDEN, SHARP and repeated painful yawning (there goes my jaw, out again).... the ice cold sweat stinging my eyes, the nausea, the dizziness, and quickly my mind can't focus (even on the pain). My palms sweat... and that's just the beginning. But thank god I have another pill to take- and in fifteen to thirty minutes both the WORST of the pain and that awful illness will fade... that's what I remind myself each time I'm overdue for a dose. At least I have the option to take a pill and it will fade.
But without that monthly appointment, and without that pill, I'm reminded, in excruciating detail- of every movement I've made in the last ten days. I'm reminded of just how many fingers, which wrist, knee and how many ribs I've dislocated and subluxated and, of course, which hip has spent more time *out* of its socket than where it belongs. Don't get me wrong - I'll still feel all of that once the pill kicks in, just a little less clearly (thankfully). It never actually goes away.
We aren't all so "lucky".
For hundreds of thousands of others like myself - those who have yet to be diagnosed, those who have yet to be believed, those who have yet to find a doctor willing to prescribe them any kind of long term or extended, slow-release or powerful enough pain medication... for them the relief never comes. They get to feel ALL of it, ALL of the time.
Thousands of people living with the same pain that I face , will make a heartbreaking and permanent choice - often the only choice they feel they have left: many of them end their lives. I even, sadly, can understand why they make that choice.
These people aren't dying from losing the fight with depression. They aren't overdosing because they lost the handle on an addiction. Please, take my word for it- living with this constant chronic 10/10 pain, in which EVERY movement you make, every breath you take, is met with excruciating pain... there are only two choices- PROPER pain management or death. There is no in between- no one is designed to live in devastating pain. And when you have NO options for controlling the pain - people resort to things you never think they would. Honest, law-abiding people will inject themselves with sketchy heroin just to get a brief break from the pain - and sometimes those people overdose and die, and then their family learns that they overdosed, and people are blaming this horrible situation on the DRUGS and not the REAL PROBLEM: Chronic pain that is being IGNORED by the entire medical industry!
I know that despite the Ehlers Danlos Syndrome, I am so very lucky. I am EXTREMELY fortunate to live in a place where I have help watching my son, where I'm covered by insurance that pays for most of my medical care and medications. I know how lucky I am to have an incredible husband who fought for me and advocated for me and who attended SO MANY awful hospital stays and doctors appointments with me until we found the right team of doctors. But even with a rheumatologist, a gi, an endocrinologist, an orthopedist, an allergist, a dermatologist, a uro-gynocologist, and an oral surgeon who specializes in EDS (and pulled ALL my disintegrating teeth thanks to the EDS) plus a fantastic general practice doctor... it was only ONE specialist, after three years who was willing to write scripts that would eventually get me out of bed and keep me out of the constant rotation of hospitals - by prescribing the powerful long acting opiate pain medication that I've taken every day for five years. But I can't tell you what I might have chosen if I hadn't finally gotten relief through LEGAL and WELL REGULATED medication - it could have been heroin - it could have been suicide.
I remember, each time I'm late taking a dose, each time my pain is still a 10 and I can't take anything more medication for hours for the breakthrough pain... I try to focus on the hundreds of thousands of people who DON'T have that one amazing doctor, or that incredible husband to advocate when they were too weak or too depressed and in too much pain to make just one more phone call, or to go to just one more appointment - Many people can't stomach one more visit with a doctor where they can expect to be treated like a junkie looking for a fix rather than a patient in PAIN. I know how lucky I am.
What do you do when you can't get anyone to help?
People like myself live with pain that makes you break out in a cold sweat, the kind of pain that you can not experience without squeezing your eyes (filled with tears) closed and focusing on your next breathe, a pain that is SO searing, so hot, so electrifying that you can't sleep for days at a time...giving rise to the term "painsomnia"... and there are *millions* of us living with this unending pain, and the *LUCKY* ones have access to medication that only *sometimes* helps.
The pain NEVER fully goes away - even when we're laughing, or eating our favorite food or celebrating our birthday or a promotion or doing something unusually active (that we'll no doubt pay for later)... the pain is still, EASILY, the number one thing on our mind, no matter how hard we try to focus on whatever BETTER might be going on.
And on our bad days? If you don't live with one of us, you've likely never seen or heard from us during the bad days. When we're sick or sad or heartbroken or swimming in one disaster after another...our pain just AMPLIFIES anything bad and makes it THAT. MUCH. WORSE. It's not a mystery why people with chronic pain are ending their lives in STAGGERING numbers, or why people are turning to street drugs when their pleas for relief from the pain have been ignored for months or years on end.
Having a "good day" can be the worst thing -because we tend to over-do it. We want to cram in everything we haven't been able to do in the last few weeks, or months, because hell, we never know when -or if- we'll ever get another "good day". And worse than overdoing it, and paying by needing days of recovery for a simple day of running errands - is the immediate judgement when we're seen out and about - god forbid we are laughing or smiling - because then it's assumed we are ALWAYS fine and that the other 99.9% of our life is a great big lie. How do you think that feels - to be told that we aren't EVER allowed to look or act well, because while sure, our friends and family want us to participate in our own lives... as soon as we do, it's assumed that we should ALWAYS be able to. It's a horrible, horrible Catch-22.
In reality, chronic pain and chronic illness doesn't conveniently disappear when the weather is nice, when we're starving and need to get groceries, on our wedding day or when the baby cries and the dog needs to go out... it doesn't turn off during that one day we have off from work this week, during the vacation we planned months in advance, or on the afternoon our spouse is both off from work AND "in the mood"... it doesn't give us the evening off on the evening of the concert you got tickets to AND found a babysitter for. It's ALWAYS there. And PATIENTS with chronic pain and chronic illness don't go away just because the hospital discharges them, the ER sends them out the door, or their doctor's office says "sorry, we can't or won't prescribe you medication that can help you."
Severe chronic pain is all-encompassing & it doesn't give you a break, ESPECIALLY not when you need a break the most. As a matter of fact, those are the times when the pain is at it's worst.
And we aren't supposed to talk about it either.
We try not to talk about it for fear of being a constant bummer - we are often downright in FEAR of the moment a doctor asks for a number to describe our pain. Do we downplay it so they don't think we're exaggerating? Do we tell the truth and risk that they assume we're hypochondriacs or just jonesing for a fix? They don't see that we turn down attending FAR more fun events than we attend or have missed so much work that our job is in danger and when we were absent and we say "I had a bad day" or "I wasn't feeling well" it WASN'T just like last week when you had the sniffles and stayed home from the office with a good book and a hot tea. When we are brave enough to tell a doctor that our pain is a 10 - it has probably BEEN a 10 for a very long time. And sadly - we're probably EXPECTING an eye-roll in response.
If you work in the medical profession I have ONE request... (PLEASE understand - I know that you work in a VERY demanding and difficult line of work. I do realize how much pressure is on you NOT to treat our pain.)
But PLEASE... Please take a moment with each and every patient to remember, for a moment, that not everyone who tells you they are in pain is just looking to get high.
1) Speaking for all of us in constant pain - I beg of you: PLEASE don't immediately judge us. Please don't assume that because we are crying too much, or not enough - because we are preoccupied on our phone or curled into a ball - please know that we all cope differently and just because we aren't sobbing and begging, it doesn't mean that we don't want to.
Please don't leap to the conclusion that no one is *really* in pain. For many of us, it took 200% of our effort just to drag clothes onto our bodies and to get to this appointment or into your ER in the first place. At least listen to us. Please talk to our close family members, take a complete medical history, really LOOK at the big picture. Please don't just tune out the moment that you hear that we're in pain.
And for those of you who don't work in the medical profession : perhaps you have a friend or family member suffering. Please try to remember that we didn't ask for this pain. We don't deserve to be treated like addicts, like people who make poor choices or who take "drugs" for fun. If we're lucky enough to HAVE access to pain medication, and we're taking it responsibly - please don't judge us. And if you're concerned, TALK to us, not about us.
Now if you'll excuse me, I have to put my wrist back in and tape it there before the swelling gets any worse- typing this really did a number on me. I'm about nine hours from my next dose, so I suppose I won't be sleeping again tonight... the chest pains from my out of place ribs feel very much like a heart attack... but I'm going to try some meditation and to lie in the dark and hope I can will away the throbbing that started from dislocating my left wrist that happened from holding my cell phone while I tapped this blog post out on it.
I hope you'll rest well tonight. Please keep those who can't rest because of chronic pain in your thoughts.
We really DON'T want your sympathy. We just want to be treated with respect and understanding.
Why does it matter what we call it? Isn't "needing" pain medication the same thing no matter what?
A blogger writes about their concerns regarding medications that their doctor prescribed...
A husband worries that his wife is taking too many prescription pills...
A sober recovering addict gets injured and is concerned that treatment could affect his sobriety...
A friend is afraid of taking pain medication after surgery...
Dependence... or addiction?
These two terms, often used interchangably by everyone and anyone, are EXTREMELY different.
They mean two incredibly different things- and yet from doctors to patients, concerned loved ones to clueless (but often well-meaning) friends, so often I see these words used interchangeably, as if they are synonymous. The people who say these things often don't mean anyone harm, but that's exactly what they are doing - they are causing harm to anyone who suffers with addition, and those who live with dependence.
Using the wrong word isn't harmless at all and this blog is REALLY important to anyone who falls into either of the above categories.
I'll explain why the proper use of each of these words, even in CASUAL conversation, *SHOULD BE* crucially important to all of us* . This doesn't just apply to those of us living with (or loving someone) living with chronic pain (and not just Ehlers-Danlos Syndrome, ANY pain.) I hope you'll take a moment to read on, and find out why.
So why does it matter which word we use, and how could the wrong words harm anyone?
The short answer, is that using the wrong word in front of the wrong person can PERMANENTLY impact your future health care, including the possibility of leaving you facing a lifetime in untreated pain.
It is literally THAT important.
If you say the words "I'm concerned about addiction" to a doctor who is considering prescribing you pain medication of any kind - there is a GREAT chance that they are IMMEDIATELY going to re-consider, and put you on the absolute minimum - or no medication at all, because doctors are TERRIFIED about losing their licenses and facing law suits over "causing" drug addiction.
The media is pushing an agenda that DOCTORS are to blame for the current opiate / heroin addiction crisis and the resulting millions of deaths from overdose - so if you want to fast-track yourself into a lifetime of non-treatment, bring up the "A-word" early on with any doctor. Let me explain exactly what I mean:
Addiction kills people. Addiction treatment is a billion-dollar industry, law suits against medical professionals, who wrongfully or not, are being blamed for addiction - it's a terrifying time to be a doctor, especially in the current society where no one wants to take responsibility for their own poor choices in life. Hell - if a woman can spill hot coffee on herself and win a HUGE lawsuit over it - why not choose to binge on drugs and party-hard, and then sue the doctor who thought he was treating you for "back pain"? Right? The lititigeous society we live in, and the need to place blame on anyone but oneself, has lead to a dangerous, DANGEROUS trend in pain-management - doctors are terrified to put anyone on any medication they COULD abuse, and people with real pain are being hung out to dry, and offered no relief at all because doctors are left thinking "Well, at least they can't sue me for becoming addicted to pain killers if I refuse to prescribe them!"
Millions of people die as a result of addiction every year. Dependence, on the other hand, has never killed anyone. Overdose- yes - but dependence itself is not in any way dangerous.
"DEPENDENCE" is not a dirty word. Diabetics are dependent on insulin, and infants are dependent on their caregivers. In terms of medication - dependence is the PHYSICAL reaction that's EXPECTED when a person is put on medication long-term - it's the body's adjustment to having that medication in your system on a regular basis. Dependence is in no way indicative of any kind of irresponsibility on the part of a patient - it's an EXPECTED part of treatment. When the human body adjusts to the prescience of medication, it's normal for the body to learn to expect that medication. It's the reason why MANY medications require that you be slowly weaned rather than stopping suddenly - it has ZERO to do with misuse or abuse, it's simply the fact that your body has come to expect the presence of a chemical and in the absence of that chemical, the body can have a range of reactions. The most common reaction to the LACK of a medication is known as withdrawal.
It's usually opiates or benzodiazepines, the two medications you hear people discussing when the word DEPENDENCE or ADDICTION comes up. On any long term course of treatment with MOST medications that treat pain, mental illness and many other conditions - becoming dependent on your medication simply means your body adjusts to the presence of the medication, that in time you may need a higher dose for the same affect, and that its likely you'll experience withdrawal symptoms if you suddenly top taking the medication. Dependence is a reason it's CRUCIAL to always be up front, honest and straightforward with your physicians. You need to always discuss the proper way to start, to titer up or down, or to stop any medication that has the ability for dependence.
Withdraw symptoms from pain medications are no joke and can kill you if done wrong... it's no joke. BUT - and this is perhaps the most important point in this whole post - just because a person is suffering from withdrawal symptoms, does NOT mean that they are an addict or that a person has done ANYTHING wrong. It simply means that their body is used to taking a certain medication and it's no longer in their system.
NOTHING about dependence is unexpected, upsetting, or indicative of a drug problem in any way. Diabetics become dependent on insulin. Those with congestive heart failure become dependent on heart medications. No one would EVER roll their eyes and say with disdain "Are you sure you want to start taking insulin? My aunt was diabetic and became dependent on insulin!" -that would be absurd. Of course their body NEEDS the medication, its treating a legitimate illness!
Dependence to antidepressants or pain medications is IN NO WAY negative or shameful- if you're taking it as prescribed, and you're legitimately treating depression or severe pain - you're going to develop dependence.
Addiction, on the other hand, is a psychological issue in which medication is taken for recreation - to get high. Yes, a person can start off treating a legitimate condition... like post-par-tum depression or temporary pain, and yet continue taking the medication long after its needed. That isn't dependence... it's ADDICTION.
When a person misuses or abuses street drugs, over the counter or prescription medication (be it legally prescribed to them or not)- for ANY reason other than why it was prescribed... that's addiction. Taking too much of a medication, taking medication too often, or taking it in a way OTHER than how it was prescribed (like crushing and snorting medication that you're supposed to swallow whole... that's addictive behavior.
Any time a person misuses or abuses a medication or drug, they are displaying symptoms of ADDICTION.
☆☆ NOT DEPENDENCE ☆☆
If you or someone you know is displaying addictive behavior, the person needs to seek both physical and psychological treatment (by professionals) to get clean and to determine WHY they have developed unhealthy & addictive behaviors.
Coming from my career in law enforcement where I've seen a LOT of people misusing and abusing both street drugs and prescription medications, I can tell you with complete honesty... addiction doesn't "just happen" because a person broke their arm and was put on percocet for ten days. Never do you hear a person in a battle with addiction say "My life was going along just perfectly, then I was put on medication and next thing you know, I'm shooting up heroin in an alley."
The reasons behind addiction are COMPLEX, complicated and not the point of this post. The reality is that no matter how you feel about addiction, it STARTS with a choice to put a substance in your body that you didn't NEED - it starts with a CHOICE. Addiction may be a disease, but unlike pancreatitis, hypothyroidism or cancer, addiction begins with a person CHOOSING to put a substance in their body for a purpose other than a medical need.
The DISEASE of addiction is what happens when the cycle of dependence and addiction intertwine and you're left with a person who needs more and more of a drug to get high, and who ends up chasing that high they once enjoyed. As the body becomes more and more used to a substance, it can be difficult or even impossible for a person to get the euphoric high they once got - they need more and more of the drug, and often times it will come to a point where they are doing the drug just to avoid withdrawal symptoms.
Addiction STARTS with a choice, and just as a person makes the CHOICE to use a drug for purposes other than they're intended, an addict can only be treated if they CHOOSE to do so. Addicts can't be forced, guilted, shamed or bullied into sobriety - they have to choose sobriety to have ANY chance in hell of success. If you're in this situation AND dealing with chronic illness, I truly feel for you, I really do - some former drug abusers have, with therapy and supervision, been able to later handle responsible treatment with medication. Others can never take a single dose of their former drug of choice without falling right back into the cycle of addiction.
It's CRUCIAL to understand that a person can be dependent AND addicted, but that dependence doesn't require any treatment. Unless you wish to stop or change medications, for example, because your treatment is no longer effective, or perhaps because you're considering pregnancy. You would want treatment to avoid severe withdrawal symptoms, but not the same kind of treatment that an addict would require. Because there was never any MISUSE of the medication, the treatment wouldn't require the psychological component. This is why using the right terms when we talk about dependence and addiction is SO IMPORTANT.
If a newly pregnant mother wants to change pain treatments to something less dangerous during her pregnancy, she will likely need treatment to avoid the dangers of withdrawal... but she doesn't need addiction counseling. And if she USES the word "addiction" rather than "dependence", she could face Child Services swooping in to take her newborn baby away. Does that make the difference more clear - how CRUCIAL it is to use the right word?
Its *EPICLY CRUCIAL* that we use the right terms any time this topic is discussed. Doctors use addiction as an excuse not to treat legitimate patients in pain. In reality, repeated studies have proven that only an INCREDIBLY TINY number of patients who are living with real pain with ever face addiction to medications they are using to control that pain. Research has suggested that of those who have been diagnosed with both chronic pain and addiction... the majority of those people suffered from addiction or mental illness issues BEFORE they were suffering from chronic pain. This makes it even more clear: If you are an otherwise mentally healthy person, the chances of becoming addicted to medication that you're using (under close supervision from your doctor) - your risk of ADDICTION is VERY VERY low -unless you've battled an addiction in the past.
This is GREAT news for many people who are suffering but are TERRIFIED to try stronger medications. Often, somewhere along the line, they've been traumatized by someone who used the WRONG WORD. They then came to wrongly believe that treatment with opiates is going to CAUSE an addiction. That's not how it happens, folks, 999 times out of 1000. In reality, most chronic pain patients can't comprehend addiction because we're just trying to control some of our pain to get through the day. 'Getting high' isn't enjoyable or even possible for the majority of patients who are treating real pain.
It comes down to being honest with yourself. Is your pain truly what you describe to your doctor, or do you embellish and exaggerate your symptoms? Do you make things sound worse than they are because you are in FEAR of pain, or are your describing your symptoms accurately? Have you requested certain medications because you prefer how they make you feel rather than how they treat a symptom? Have you ever told a doctor that you're allergic to something, in order to get a prescription for a different type of medication? Those are common signs of manipulation and addiction. Doctors look for these red flags because they are so commonly used by addicts.
When patients try to lessen the social impacts of addiction by using the wrong terminology (saying "I became dependent on it", rather than "I developed an addiction."- it leaves many people assuming that anyone who takes pain medication long term is truly an addict. It leads to belief that anyone who takes these medications is misusing the medication, exaggerating their symptoms, exaggerating their pain, or taking these unnecessary and powerful drugs just "for fun".
We patients, as a whole, need to be sure that we discuss and address these things in honest terms. If you have a psychological dependence - you find yourself taking more and more, not because the medication is no longer working, or not at your doctors instruction- but because you like the warm-and-fuzzy feeling opiates give some people, then we need to call a spade a spade. It doesn't mean anything less of your illness, it doesn't diminish your disease or even your pain, HELL, if anything, we should ALL have much MORE sympathy for an ill person with addiction because their inability to trust themselves with taking medication responsibly means that they likely to successfully treat their illness.
As it is, doctors don't want to treat chronic and invisible illness pain. They risk investigation by the DEA, loss of license and arrest if they over prescribe or if a patient in their care later blames the doctor for their addiction... and sadly... MANY ADDICTS DO. After all, at its root, addiction starts with dishonesty. At its core, addiction is often dishonesty to one's self. "I really do need this," the addict tells himself, "My pain really IS that bad." Addiction starts with lies to oneself and progresses to lying to everyone. And because it starts with dishonesty, MANY medical professionals have come to believe we are ALL faking the severity or existence of our pain to get "good drugs". You show me one chronic pain patient who's never been treated like an addict, and I'll bet he's riding a unicorn, because we have ALL been there. Women and young people *especially*.
When someone with our condition actually behaves dishonestly due to mental illness, PTSD, anxiety, depression...and lies, self medicates, and abuses prescription drugs that others NEED to treat our pain, it hurts all of us. More than anything, it means that most doctors will refuse to treat that person with controlled prescriptin medications going forward. When someone overdoses on sleeping pills, it doesn't matter how severe their insomnia is, there's a good chance no doctor will ever want the liability of prescribing for them again.
It's a complex problem and I soberly and sincerely feel REALLY bad for anyone suffering with the same pain I live with. For someone who can't trust themselves to take medication that will control their pain... it's a total nightmare of a problem. There are medications that produce a "high", but they are generally far less effective at controlling severe pain. Some treatments exist, like suboxone, that is often used for addiction treatment - these can help some people's pain without allowing them to feel the euphoric the high, and if you've got pain and addiction, I genuinely hope that that works for you, and that you'll get counseling and treatment going forward for the underlying conditions that caused you to abuse your prescription medication in the past.
Recovery is a forever thing, and I have several sober friends who have been sober a very long time (decades), and my only suggestion (Having worked in law enforcement and seen a LOT of addiction first hand) is PLEASE, Please seek SCIENCE-BASED treatments as opposed to purely theological.
You can pray yourself silly, if that floats your boat, but science based treatments have proven infinately more effective than "higher power" based programs like N.A. and A.A. which have higher than 98% failure and relapse rates. There are several fantastic studies online that explain how much MORE effective science based treatments are than 12-step or any faith based programs... and doing the first DOESN'T proclude you from ALSO doing the latter, if faith-based programs interest you.
Unfortunately though, the faith based programs OFTEN suggest they are the ONLY way, which LEGITIMATE, highly researched scientific studies have proven are not true. \
Whatever it takes, I hope if you're suffering with addiction, that you get and stay clean, and that you also get treatment for your pain.
And I genuinely hope that you'll understand what I'm trying to convey- that I'm not trying to be rude or mean in any way... I just *really* want people to understand the CRUCIAL reason we all need to accurately use the terms "dependence" and "addiction" & the MASSIVE difference between the two.
It absolutely DOES matter.
It's time to talk about it. Let's go back to Virtua hospital in Voorhees, circa May 2011.
But first I have to take you back to before that - back in 2007 or so, back when I was healthy(ish) - or at least before my Crohn's disease and Ehlers Danlos Syndrome and the half dozen or so disorder that go along with it (postural orthostatic tachycharcia syndrome, interstitial cystitis, mast cell activation disorder.. I could go on) - back before these had all been diagnosed and back before my son was born. Back then, I was working full time. I was a well respected police officer who had been promoted twice and who was successful and happy in my career. This was before repeated medical abuse by Virtua hospital forever seriously contributed to my current condition - which can only be described as "disabled." Back then, I kept really busy and it wasn't uncommon that I made regular DUI and narcotics arrests. Back in those days I was angry and frustrated by how easy it was for people with absolutely no medical problems to have a constant supply of oxy, codiene, xanex, dilaudid, morphine and fentanyl (patches and pops!) and how often these drugs contributed to dangerous driving, or inspired violent behavior or was the motivation behind burglaries, robberies and theft - you name it, these meds were on the streets and - it seemed - in everyone's pockets. I guess back then, I was lucky enough to believe that there was almost no one who actually NEEDED those medications, and if they DID, surely they were too sick to be out driving around or shoplifting from Sears.
Many years later, when *I* was diagnosed with a host of debilitating and extremely painful conditions that cost me the career I loved, I couldn't believe that it took a great battle and several YEARS to get proper pain management - to get my pain under control. Here I am, a law abiding, honest person with integrity - I've never abused a drug in my life, and have never "partied" or done recreational drugs... and it took FOREVER to be taken seriously and treated with dignity and respect and to have my pain treated. I remember sitting in so many doctor's offices and thinking "I've been trusted to carry a gun and protect the public. I've been entrusted with the ability to place people under arrest for breaking the law, and in my career, my integrity was EVERYTHING. I never did ANYTHING to discredit myself - I was always 100% honest in my reports and when called to testify. I never trumped up charges or altered evidence, and I always made a VERY sincere effort not to hold any prejudice - I ALWAYS endeavored to treat everyone I encountered with respect, and yet, here I am, sick, and seeking answers and help...and I'm being treated like I'm at best, dishonest, and at worst - a criminal... Why is that? How could that be right?
At the root of my frustration and anger with how I've been treated as a patient, I'm reminded of the WORST treatment I've ever received - a time when I was in the hospital for the umpteenth time (from interstitial cystitis, a condition related to my Ehlers-Danlos Syndrome, but we didn't know that back then. ). This was shortly after the birth of my son, and I had been suffering from horrible chronic pelvic pain ever since my C-section and subsequent six weeks with Mono.
The hospital kept admitting me, despite confusion over how I could be in such bad shape and yet not have a high fever -they were confused by how the symptoms kept coming back, by how I could be in so much pain, and why I wasn't just getting better. Each time, they'd admit me - stick me over and over because I'm so hard to get an IV in - and they'd begin pumping me full of Ciprofloxin and Levaquin... during most of my hospitalization between February of 2011 and July 2012, I was nearly hysterical from the bladder and pelvic and back pain. To add further insult to injury, ALL my joints felt as if they were engulfed in flames and hardening to stone- and yet every time I told the doctor and the nurses, they rolled their eyes and said it "didn't make sense". It had been more than four years since I had almost died from the Crohn's disease - I was on no regular medication except to keep my GI function in order. I had never taken pain medication for longer than 2 or 3 days - with the sole exception of my seven week brush with death back in 2007. But even then, I'd gone home, sucked up the pain, and had gone back to work with NOTHING for the pain.
And yet, any time I brought up how severe my pain was to Virtua's staff- I was met with cynicism, doubt, distrust and the VERY bare minimum there was to offer by way of pain medication - despite my having been in and out of the hospital without a true diagnosis - each time they would insist upon starting with the weakest medication, even though doctors claimed to have noted that they never yet helped. When I would be discharged, I'd be told to go home and take Motrin, even though my GI doctors had been clear - It's only ever taken as little as two or three doses of Advil, Tylenol and Aspirin to cause ulceration and GI bleeding.
I tried to be patient and understanding despite my pain - but I'm a person who never goes to the ER unless I'm absolutely in agony. By the time I've broken down and allowed myself to be dragged to the ER - YES - of course I've tried heating pads on my back and I've probably taken the max dose of Tylenol for the past six days. And yet, during each hospital stay, when a doctor would regrettably but eventually authorize IV morphine or dilaudid (the "big guns" of pain treatment) -the nurses would stand just outside the curtain or in the hallway chatting about what a fake I was... I heard the conversations clearly. My hearing has never been a problem. It made me embarrassed, furious and certainly didn't contribute to my getting any better. How can you trust a hospital with your care, when it's clear that they don't trust you to be honest about your condition?
Eventually, during these stays, once I was finally started on regular intravenous Dilaudid, I learned to set an alarm on my phone so I knew when I could request it again - nothing seems to anger a nurse more than asking for pain medication before it's time. Requesting pain medication at all is pretty much a guarantee that you'll be treated like a burden more often than not - unless you've got cancer, or a very clear bone protruding from your body, you can expect to be treated like a burden for being in pain.
A little tip for those new to being admitted; Even if you're dying, hospitals won't give you the pain medication the doctor has ordered unless you request it. And I don't mean when you first get there - I mean, EVERY single time, every 3, 6, 8 hours - whatever they've allowed for - if you don't ask, you won't get it. They'll automatically bring you ever other medication the doctor wants you to take, but you don't get pain relief unless you specifically ask. When you do ask, it takes some 30-90 minutes for the nurse to get around to your room, to ordering, recieving from the pharmacy, and then actually GETTING that medication to you...so if you've been given an order for "every three hours"- don't actually expect relief every three hours. If you don't ask, you'll never get it at all. If you are lucky enough to fall asleep, you can expect to wake up to severe pain because they won't bring it while you're asleep - and when you wake up in agony and you DO ask, just know it's going to be a while before it gets to you.
When you are in pain management, one of the first things they explain to you is that pain medication works MUCH better if you take it BEFORE you need it. If you wait for the worst of the pain to return before taking your next dose, it's much harder to control your pain - but as a rule - hospital don't seem to care much about what makes sense when it comes to pain and healing, and that was DEFINATELY the case at Virtua. By the time my "every three hours" order was actually in my IV, it was ALWAYS more like 4-5 hours. And if you dare require medication at shift change - add another 45 minutes to that equation.)
After learning how quickly the medication wears off and the pain would spike again, I began to document the time I was actually given all prescribed medications. I would set alarms so I wouldn't bother them before I could have it, and to remind me to ask fifteen minutes *before* my next dose was due - this would give them time to order, gather and bring the medication. I would mark off the exact time it was given so they couldn't lie to me about when I was allowed to have it again (a common issue I found among nurses)... I was clearly the only one that cared about my pain not being out of control.
I was confronted by a nurse who said "if you need to set an alarm to remind you to ask for pain meds, you must not need them" - an argument that still makes ZERO sense to me. Keeping track of when you're given medication and knowing when you can ask for it again seems like common sense. I'll get into the abuse I suffered at the hand of my admitting doctor a bit later - my experience at Virtua Hospital in Voorhees NJ in mid-May 2011.
I had already been in the hospital several days with what they THOUGHT was an endless stream of UTIs and bladder infections. They at one point told me I had MRSA (A highly contagious and incurable staph infection) in my bladder, that they ADMITTED I could have ONLY gotten from a catheter. The only catheter I'd ever had was IN THIER HOSPITAL during my c-section months earlier. It wasn't MRSA. Magically, a year later, no one could find any record of my ever having had MRSA. No one could find any test that had been performed or any culture that said I had MRSA - to the point that I was looked at like an alien when I referenced it at a subsequent ER trip. I was told I didn't have and had *never* had MRSA and that no one could find ANY record of any mention of it in my history at Virtua. It's still a mystery, but I have my theories.
I'd been in and out of the hospital, away from my newborn son, each time for 3-9 days, with this horrible shooting low back pain, doubled over from the burning, throbbing pelvic pain and the stabbing pain in my kidneys. Because of the "MRSA diagnosis" they refused me ANY visitors unless my visitors were FULLY suited in gowns and gloves and masks & surgical outfits from head to toe... except my newborn son who they wouldn't let see me AT ALL (regardless of the fact that in between each hospital stay I was at home with him and in constant contact with him.) They put me on lock down, meaning I had huge signs that everyone had to don protective gear and to remind all staff to give me the full on leper treatment - It very clearly seemed like this "lock down" and refusal to let my infant son visit me was punishment for being a "difficult" patient.
Why was I "difficult"? Because I was in pain, and my pain was being all but ignored. It was also very clear that because my diagnosis wasn't as simple as the results of a blood test or reading an x-ray, the medical staff was frustrated that I wasn't content to just stay at home and suffer. My repeated appearance with pain and nagging symptoms that wouldn't go away with antibiotics made me a burden.
That leads me back to the doctor from hell...
She'd ordered a voiding cystogram test to try to explain what they assumed were repeated antibiotic resistant UTIs (again, this was before the interstitial cystitis diagnosis). For anyone unfamiliar with the test; They put a catheter tube in your urethra, then inject and fill your bladder with dye. They record imagining of your pelvic region before, then while full, and then while your bladder is emptied (often more than once) - while you lay on a cold metal table and through the catheter, you pee out the dye.
Now, I remind you, I was in god-awful pain and the hospital was reluctant to give me anything to make me comfortable. It bears mentioning that even prior to the first time I was given any kind of narcotic, when I was rushed to the hospital with a broken jaw a few years prior, doctors were shocked to find just how little effect strong medications had - I have always been notoriously been difficult to anesthetize and local anestetics (like they use at the dentist) don't work at all or have to be given in MASSIVE quantities and still, wear off in an unbelievably short time.
It's a frustrating and fairly common issue for folks with Ehlers Danlos Syndrome - that anesthesia and opioid narcotic medications just don't work very well - but remember, I was yet to be diagnosed with EDS at that time. I'd been known to require ungodly amounts of anesthesia for my size and weight (and being a fairly slim female, it's always a shock to doctors who are stunned to give me a typical dose of general anesthesia when they find me not even mildly affected long after the "normal" patient would be out like a light). The problem carries over to pain medication, but unlike anesthetic - there's no way for them to KNOW that it's not working. I don't become impaired, drowsy - I don't slur my words or seem affected at all - and that's because I'm not. A normal "emergency" dose of strong medications like morphine and dilaudid have proven fruitless in various situations in the past - but hospital staff is weary because they hear it from addicts all the time. "The medication still isn't working" - because junkies want that high - they want more medication or a different medication. It simply doesn't matter to your average ER nurse that I just wanted to not be in horrible hellish pain, but there's a definite doubt when you're a fairly small person who requires a significantly larger dose of a controlled substance.
I had what felt like the worst UTI of my life and peeing was EXCRUTIATING. It felt like my urinary tract was SLICED and DICED inside and out, and peeing felt like what one would expect if one had passed a few dozen razor blades and broken glass, followed directly by a lovely blend of sirracha, bleach, vinegar and battery acid: It hurt like hell to pee. My urine samples had blood and PIECES OF TISSUE floating in it, so I didn't feel like my description was far off from what was actually happening.
Now, I should also explaining that I'm a horrendously SHY person when it comes to the restroom - I never even SAW the inside of a restroom through 12 years of school and 5 subsequent years in college & the police academy. Yep. Not ONE TIME. I've always had a HORRIBLE discomfort around using public restrooms and won't even pee in my own house if someone else might hear me. So you can imagine that I was already traumatized beyond belief at the mere THOUGHT of the catheter, let alone the actual test.
My thoughts: "You're going to shove a plastic tube up where I pee (which currently burns like the fire of a thousand suns), and then fill me like a water balloon (despite the fact that every time a teaspoon of urine gets to my bladder I feel like I'm gong to EXPLODE from the pressure) and then a half dozen people are going to stand around and watch me lay on a table and pee myself while it's recorded on film.... Yeah, COOL! No problem...."
So come test time, I was already mortified and sobbing when they pushed me from the room and away from my husband... but the real "fun" started when they couldn't get a catheter in me. (I forgot to mention that BEFORE THAT...my floor nurse was INFURIATED that I was crying when she came to my room to put the catheter in. She walked into my room, found me in tears, and turned around and walked out - her words were "They can do it downstairs. Clearly you're going to be difficult.")
Fast forward downstairs .... One very kind (MALE) nurse attempted to talk me through the catheter procedure, promising he's never been more gentle and tried to calm me down (seriously he held my hand before and tried his best to calm me) - but by the SEVENTH attempt to insert the catheter, I was practically hanging from the ceiling from the pain and NO ONE ON STAFF COULD GET THIS THING INTO ME. Not because I wouldn't hold still or because of anything I did... nope, they just "couldn't get it in". (My husband and I later discussed that my pain and swelling probably made it incredibly difficult but no one seemed to consider that...)
By the eight, ninth, hell, the fifteenth attempts -as each new staff member passed me off, the attempts were *anything BUT* kind & gentle like the first guy TRIED to be. More like humiliating and barbaric. I had no less than EIGHT different nurses/radiology staff and TWO doctors TRY to put a catheter in me OVER AND OVER AND OVER and when they finally, FINALLY ("sort of" succeeded- **their words**-) the pain was so astronomically violently severe and the spasming was so unbelievably intolerable, I couldn't help but be arched up off the cold metal table where I was SCREAMING that they HAD TO STOP. The radiologist told me they couldn't and that they HAD to do the procedure- but I literally could NOT stop myself from screaming from the pain. Fists clenched, arched up off the table, half naked and humiliated and sobbing and screaming- they unceremoniously pulled it out (and NOT kindly) .... but not before a VERY bitchy nurse tried to TELL/CONVINCE ME that "Catheters aren't fun but they don't hurt THAT bad!" and repeatedly demanded that I "CALM DOWN." (Shocking that this didn't work.)
(My thoughts; "Right...cause clearly I just like the attention I'm getting!? Because I'm screaming from joy? Because I WANT to do this all over again tomorrow!?")
The male nurse who had tried first held my hand as he pushed me and my bed back up to my room. I couldn't even look at him as I sobbed into a pillow. He must have apologized ninety times to both my (shocked and horrified) husband and I. "I've never not been able to get a catheter in on the first try..." he tried to explain, "I mean they aren't fun but I've never had anyone in so much pain..." He clearly was the only one who even believed how much pain I was in... he told me he'd talk to the nurse about asking for medication for the pain. Believe it or not, I'd been DUE for my "every three hour shot" BEFORE that epic hellish adventure... it was six and a half by the time the one measly half milligram of iv Dilaudid came. It goes without saying that it didn't help. I asked for the Benedryl that night, not for the itching but in a desperate attempt to help me sleep.
My husband was left to console and calm me after that massively failed attempt ... I mean, we never even GOT to the procedure part...and forget all my "faked" pain... NONE of the staff could explain why they (the clearly PERFECTLY competent staff) couldn't get the catheter in. And despite their REPEATEDLY shoving this dry hard plastic in and out of my already THROBBING & BURNING urethra... they blamed the failed procedure on my "IRRATIONAL" reaction to the catheter. NOT ONE PERSON (except that first male nurse) seemed to be bothered by how "impossible" it was to PUT THE CATHETER IN.... It was like I was some magical unicorn capable of being the first woman ever to voluntarily clamp my urethra shut on command... and, apparently I also had the power of a cloaking device (or maybe they gave up on asking medical staff and they were just asking random janitors and random hospital visitors to give the catheter a shot and THAT'S why that couldn't find my urethra... ).
We were informed that the next day I would be given "a shot of pain medication and something to calm me" before the procedure. I *wanted* general anesthesia but they assured me I had to be somewhat conscious because I had to be able to hold the dye inside me and pee when commanded (again.... suuuuure... no problem for a completely traumatized person who doesn't even go INTO public restrooms). But never mind that.
The next day, they conveniently forgot the promises they'd made and sent a single nurse to come put a catheter in and to wheel me to my procedure. Thank god my husband was there to laugh *for me*, and to INSIST they give me the Dilaudid and Ativan BEFORE the catheter. The nurse didn't seem to have read the notes on the previous days' events, nor did she seem to understand that the "silly, unnecessary and clearly overboard" medications ordered were not to appease me for the procedure but were to *proceed* the CATHETER.
So they sent her to do the catheter at 1:49pm for a 2pm test and informed me that the entire radiology department was waiting to LEAVE and I needed to "get with the program"... but even after it was explained to the nurse what I'd been through the day before, she insisted that they would give me the meds DOWNSTAIRS and that I needed to LET HER put the catheter in so we could "get on with it."
Needless to say, day two was a total strike out and the doctor was INFURIATED that I'd "refused" the test. I'm not kidding, that's the terminology she used. That's when my husband *had* to leave to deal with the work he'd been missing all week and the lovely cardiologist who had been my admitting doctor, came to "discuss" her issues with me.
(In her words); She started off by telling me that I must REALLY be enjoying my time there since I was REFUSING to cooperate and that by putting off the tests to show them "what's wrong with me" I was
"being a complete bitch" and "ridiculously high maintenance" and that she knew EXACTLY WHY.
She then went on to tell me that she "knew about my little alarms" and launched into an angry in-my-face rant about how I wasn't even a GOOD liar or fake, and that "NO ONE" comes into a hospital with a bladder infection and then has 'excruciating' pain in their hips, collarbone and shoulder." She demanded that I "at least come up with 'better lies' when begging for 'ridiculously strong' medications like Dilaudid for "a uti" because "normal people" who "aren't addicts" don't even take ADVIL for UTI pain and "who the hell did I think I was fooling?" She went on to explain that **NO ONE** has "mysteriously worsening joint pain" when they've been admitted for "just a uti". (By this point I was silent - tears building in my eyes, my mouth hanging open, completely disbelieving that I was actually being screamed at by a doctor. )
Alone in that room where I'm sure she felt that no one would believe me when I complained about it later - she insulted me, cursed at me, belittled me and *repeatedly* accused me of being a drug addict just there for a "fix". She got less than a foot from my face where she told me in NO UNCERTAIN TERMS that she "wasn't buying it", that she "wasn't playing my game anymore" and that my "free drugs" were "ending forever" after this test proved my urine wasn't backing up into my bladder and that I didn't even have a real kidney infection.
Then she opened the door to my room, straightened out her coat, smoothed down her hair and with one final threat that I "WOULD cut my 'shit' and cooperate" with the test the next day- she left my hospital room as if nothing had happened. I was in complete shock.
(***IMPORTANT SIDE-NOTE: About ten months after this happened, a black box warning was added to all flouroquinelone antibiotics because they were determined to cause permanent damage and spontaneous tendon rupture in people with arthritis & other joint conditions. I was diagnosed with Ehlers Danlos Syndrome about a year AFTER this nightmare in the hospital- EDS causes all my joints to sublux and dislocate 24/7. Virtua had pumped me full of Levoquin & Ciprofloxin more than THIRTEEN full two & three week (IV) courses despite my CONSTANT reports of EXCRUTIATING and worsening/spreading joint pain throughout every treatment . We didn't know at the time that I had EDS or that the antibiotics were dangerous but CLEARLY no one CARED nor made ANY attempt to take a detailed medical history or to explain or even BELIEVE my joint pain was real during the ongoing antibiotic treatments. I spent more than THIRTY WEEKS writhing in pain *caused* by the antibiotics. An orthopedist later theorized that much of my PERMANANT low back and hip damage were a direct result of the HUGE courses of those repeated antibiotics. The pain that it caused has never fully gone away.***).
Anyway, after berating me about what a liar & terrible fake I was, I called my husband at work and begged him to come back to protect me- isn't that nice? Reports to the patient advocate and later to hospital administration fell on completely deaf ears. I was desperate for answers and to stop being sick which is the only reason I had continued to go back there- I didn't want to start all over at a new place where they would start from scratch, but I was TRAUMATIZED and to this day, I've never received so much as an apology from Virtua.
On the third day of attempting the voiding cystogram, my husband stood by- they first gave me the small dose of pain medication (which only barely worked for me but was certainly better than nothing), then the Ativan (which notoriously affects my memory and makes me "out of it")- but again they wanted to give me the shot and immediately try to put the catheter in and whisk me off to the test! My husband was the one who fought with them to wait at LEAST a half an hour for the medication to begin to work so that I'd be able to be more relaxed.
I was told after the fact that they still had a great deal of trouble with the catheter that day, but thanks to the Ativan I have no memory of the test or the pain or any of that third day thank god.
But I have never forgotten the hell they put me through, the HORRIBLE treatment I endured, the god-awful pain I was in and to this day I have medical PTSD and a strong distrust for all medical professionals - not to mention that I live with the PERMINANT damage to my joints from the Levoquin & Ciprofloxin.
I will never forgive that HORRIBLE "doctor" who took am oath to "do no harm" and how she treated me- I doubt she remembers me, but I'll never forget her face OR her insults. I'm probably just one of a thousand patients she's treated like garbage because she didn't believe their pain, and that may be the saddest part of the entire thing.
One of the worst, most hellish experiences of my life probably wasn't even memorable enough for her to recall a few years later. I wonder if she knows about the black box warning on those antibiotics or if she's still working there & blaming horribly ill people for their own pain, refusing to believe that anyone in a hospital bed is actually sick & suffering. I really hope not.
This is the type of horrible treatment people with Ehlers-Danlos Syndrome come to EXPECT from doctors and hospitals. This is the kind of treatment people with chronic pain deal with MORE OFTEN THAN NOT during our journey to a diagnosis. That should shock, embarrass, disgust and INFURIATE anyone in the medical profession... but sadly, I'm sure there are MORE than a few who would read this and immediately start to explain "but we get so many junkies who come in just to get pain meds..." as if it's ACCEPTABLE to treat EVERYONE like garbage because SOME people try to play the system. As if it's okay to assume that everyone is a fake and a liar because their symptoms don't make sense, or their pain won't go away or because medication doesn't work on Patient A the way that it does for Patient B.... How sad and shocking and horrible is it that this is the system we're supposed to trust with our lives? I was dumb enough to believe that because I'd gone to a large, well-funded and brand new area hospital, I would be treated for the illness that was making my life miserable - but in the end the hospital and its staff did FAR more damage to me than the illness ever had.
It's something I've seen a lot lately- Fellow Zebras struggling with the frustration of an illness that is so misunderstood. Many of us will tell you (even after diagnosis) we don't understand the disorder, and almost every person with EDS has experienced doctors who don't understand our condition, or worse, who roll their eyes at our pain, or tell us in one breath that we should have our heart checked and in the next breath, that they don't understand what we're complaining about, that EDS is a "minor" condition.
I personally saw two orthopedists before finding the one who actually diagnosed me- one who told me that the "significant arthritic change" seen between the two MRIs I was given six months apart didn't tell him anything and didn't explain my severe pain, and that was it- he didn't want to see me back, he didn't believe I needed treatment for my pain and he offered no follow up... but believe it or not, the second doctor was worse;
He laughed in my face.
Prior to his laughter, I sat through an excrutiating appointment that my husband had driven me to. I calmly but tearfully explained how I'd gone from being a healthy active cop, loving my job despite struggling with my intolerance to the heat, and how, since my pregnancy, I could barely make it to the toilet twice a day because of how much pain I was in around the clock. I patiently explained as best I could, the severity of my pain, the constant cracking, sliding and popping of my joints. I explained how my hips. shoulders, one knee, and my fingers and toes, were dislocating around the clock from the most minor of movement. He barely said a word during this interview before my "exam". I told him that an orthopedist who no longer accepted my insurance had suggested the cause of my problems was Ehlers Danlos Syndrome, and that my joint pain had severely worsened after stints in the hospital where I was treated with ciprofloxin and levoquin....
And then in one breath he dismissed my pain like I had finally reached the punchline of a long joke.
"First of all," he started condescendingly- " Ehlers Danlos Syndrome is very rare. You don't have it." (Mind you, he hadn't laid a hand on me to examine me, he hadn't reviewed any of my films, nor did he take ANY family history)... But that didn't stop him. "Second - Ehlers Danlos doesn't cause ANY pain, and certainly not the "severe" pain like you are claiming to have." He made sure to stress the word CLAIMING.
At this point, my mouth was hanging open from shock, my husband, thankfully with me for that appointment was speechless. Oh, but he wasn't - he went right on, "And how do you know you've dislocated something?" he chided me, clearly amused. "I wasn't made aware that you have a medical degree."
The Physician's Assistant squirmed, visibly uncomfortable. He was stunned, speechless and glanced at me sympathetically between staring HARD at the floor.. The "doctor" continued to belittle me for several straight minutes, asking questions he didn't allow me to answer and quoting "facts" about how I don't have any of the "physical features of someone with EDS". (He was mistakenly listing symptoms of Marphan's Syndrome, a similar condition that, similar to Downs syndrome, has visible physical traits). He went on to tell me that with no history of heart issues (I remind you, he took no family or health history, so he had no idea I DO have a history of heart palpitations and a diagnosed murmur.)- but he was VERY SURE that I couldn't possibly have EDS. And with that, he literally dismissed me with a wave of his hand and WALKED OUT OF THE ROOM. telling me as he walked out that he had, and I quote, "Real Patients with REAL problems. You know, like broken wrists."
His PA offered some consolation: He did believe my pain was real. He admitted that he knew nothing about EDS and that the "doctor" clearly didn't either. He told me that the doctor "really only deals with things like broken bones" and probably isn't the type of doctor I'd need (understatement of the year!). I've never cried in front of a doctor, but that day I did.
I left frustrated, angry, and I believe that was when I first said it; "I wish I had cancer."
How could anyone think or say such a thing, right? But allow me to explain.
When you are told you have cancer, a doctor sits you down and gives you a serious diagnosis. They generally treat you, and your family, with compassion and understanding that the words they are telling you are about to change your entire life - and quite possibly your lifespan, and most definately, the quality of that life for some period of time.
When you are diagnosed with cancer - 99% of the time, you have a disease with a name and some type of understanding. In the moment that I spoke those words - I was thinking so many things. Here is a discussion of the comparison between cancer and Ehlers Danlos Syndrome. I apologize for my blunt-ness, and please know that in NO WAY am I trying to claim that anyone "wishes" to have cancer, or is down-playing the devastating ways in which cancer destroys lives.
EDS, though, is an ugly nightmare: It has no cure- it lasts forever, it never gets better, but it probably won't kill me.
Cancer VS Ehlers Danlos Syndrome
Lifespan and Quality of Life Expectancy
- With cancer, generally, you either get better or you die. One doesn't generally develop cancer, and live
with it for seventy plus years. Most often after diagnosis, cancer is either treated, or, in the tragic cases, it can't be, or the treatments available aren't successful. Either way, the most common likelihood is that within a few years or diagnosis, you will either be cured, in remission, or have succumbed.
Most types of cancer are either flat-out terminal or treatable - but either way, doctors usually have SOME information about what you can expect, both short-term and long-term.
- With EDS, *if you even get a diagnosis* some SEVENTY FIVE percent of the doctors you'll see after
that diagnosis will have little to no understanding of what EDS is, how it impacts its victims, how or if
there are any ways treat its PLETHORA of symptoms, and many doctors flat-out insist that EDS
doesn't cause pain because they can't point to it on an xray. A person with EDS will generally continue
to physically deteriorate for their entire life, with new symptoms comong on, and present symptoms
worsening or constantly changing. Only one kind of EDS is USUALLY terminal (type 4, vascular,
which can and often does affect a person's organs. ) - the rest of us can expect to live a fairly long
"normal" lifespan.... most of which will involve constant symptoms and ongoing suffering.
Being Tested and Diagnosed
- You can be tested definitively for cancer. Tumors can be seen on scans and x-rays and some can by
physically cut away from the body. No one doubts cancer exists or dismisses it as "minor."
- There is no genetic test for the most common type of EDS (hypermobility type - or Type 3 - it can only
be diagnosed by completing a physical assessment AND by taking a long, complete medical history and a
complete family history. They have to look at the extensive list of symptoms and determine if you have a
certain number of possible symptoms *and then* rule out all other conditions that are likely or possible to
CAUSE those other conditions - so lots of expensive blood tests, scans, xrays and biopsies, all of which
will, with EDS, show doctors NOTHING.. EDS can't be diagnosed on any xray, MRI or other scan, it
doesn't show up on a blood test. We don't even know what gene causes the most common type.
So pretty much.... good luck getting diagnosed!
Seeing a Specialist
- If you have cancer, you'll need to see an Oncologist.
Oncologists are specialists who treat cancer and cancerous tumors - there are THOUSANDS of cancer specialists, and the United States along has THOUSANDS of hospitals as well as entire medical treatment facilities that cater to cancer patients and assisting their families. There are nonprofit pediatric cancer centers where patients and their families receive treatment free of charge through donors and there are thousands of charities raising money for the MANY types of cancer. Cancer is the single most well-funded medical research topic and a cure for cancer is the number one priority of no less than THOUSANDS of scientists. If you have cancer, you can be seen in ANY hospital or by ANY doctor, and there is NOT ONE physician on the planet who doesn't know what cancer is.
- If you have EDS, no one is quite sure what type of doctor should diagnose EDS, let alone treat us.
Let's be real - the human body is FULL of connective-tissue, and if your connective tissue is faulty, which is what EDS is, you're going to need a doctor who can treat the symptoms you're dealing with.
Wait - did I say *A* doctor? Nope: Try MANY doctors. Oh, and don't forget - you'll have to try to find one who knows what EDS even IS and it's likely they have never even have heard of EDS before you came into their office. You'll need:
-A GP (general practice) or Internist: One who is actually patient and has time to spend with patients, as you'll be in frequently, often trying to decide what type of specialist you'll need to see next.
-A cardiologist: To rule out Type 4- or if you have Vascular-type EDS, they'll need to monitor you closely throughout your entire life.
-Pain Management: Most general practice doctors can't or won't treat long-term pain due to liability, so you'll need to either deal with the severe pain or find one of the dwindeling number of pain specialists who actually treat non-terminal, life-long pain patients. Best of luck - less than 25% of patients with EDS appear to have proper pain management options in place as of a recent survey of over 8,000 of us.
-A Neurologist: For occasional symptoms from unexplained pain to issues with balance, memory, etc.
-A Psychologist: Along with chronic pain, and ADHD-like symptoms, we also often have chronic fatigue, depression and anxiety. Making this list of doctors is depressing enough... but when you get a referral, be sure your primary care doesn't write you off as having mental illness and not EDS - this happens a LOT.
-A Gynocolgist or a Urogynocologist - men will need a Urologist: Bladder problems such as interstitial cystitis is very common, and many women with EDS have constant hormonal issues.
-A Rhumatologist - To treat the systematic arthritis from the chronic joint damage - but also to rule out lyme, lupus and other conditions that can mimic EDS symptoms. Beware: Most will presume you have
fibromyalgia and may deny you have EDS entirely.
-An Orthopedist / Orthopedic surgeon - Mine diagnosed me - and helped set up bracing, get me a wheelchair and pushed for my pain management acceptance. You'll need one to repair the ongoing issues with joints as they deteriorate, and hopefully to prevent things from getting worse. Try to avoid surgery!
-A Gastroenterologist - for all the GI related issues which are very prevalent in EDSers. You may also need a nutritionist or other specialists if you've got severe enough issues to need a feeding tube or other similar treatments common to EDSers.
-A GREAT Dentist, Endodonsit and Oral Surgeon - Since EDS affects your teeth and gums (which are chock full of connective tissue) - you can expect that your teeth will someday (suddenly) fall apart and many will need to be pulled. I have thirteen of my real teeth left at age 34, and until 28 I'd never had a cavity. Sorry to scare you.
-An Endocronologist - for thyroid related issues, again, very common with EDS.
I think that's most of them....
Being Understood / Your Friends & Family
- If you have cancer, you will have the utmost in sympathy from anyone who finds out. Cancer patients are often given the highest degree of respect and understanding because everyone knows how serious and devastating a cancer diagnosis is. No one yells at a balding cancer patient as they walk into chemo treatments from their handicapped parking spot - and you can be sure that your friends and family will LIKELY support you in every way possible. If you look exhausted and sick and tell a perfect stranger you have Cancer, they typically understand immediately your struggle. No one will expect you to "fight through it" - and you can expect to be understood and received with compassion and care most of the time.
- I shared this frustration when I was at my rock bottom-i was pre-pain management, I was in worse pain than child birth, 24/7, and i couldn't take much more.... I believe my exact words were- "If I had cancer, at least there would be an end in sight, death or remission."
If you have EDS, there's a good chance that you look fairly "normal" and many of us, especially early on, do not have any highly visible medical devices. Limping could easily be faking, and when you're not up to getting out of your pajamas, or when you park in a handicapped spot and you're under 50, you can expect to be interrogated by perfect strangers. Your family MAY support you - until you miss a big planned event or fall behind on helping around the house, and then you may find that no one REALLY believes you're ill. After all - no one can SEE broken connective tissue, so how do they KNOW you're really in pain, exhausted, and feeling horrible all of the time? I have the single most supportive husband I've ever met - and even he has occasionally suggested that I should try to "do more" or loses his patience when I've had several bad days in a row and can't keep up with things. MOST people with EDS aren't as lucky, and many of us have very little, if any, actual support from loved ones, since EDS is so misunderstood. Strangers will very likely have ZERO CLUE what EDS is - so you'll either need to give a long-winded explanation or expect that they simply won't have empathy for your situation. You can expect to hear things like "But you don't LOOK sick!" or "But yesterday you were able to go to the grocery store and lift a bag of dog food, but today you can't even get out of bed?"
Seeing Doctors / Recieving Treatment for Pain
- Have you ever heard of a doctor saying to a cancer patient; "Sorry. Not sure who to send you to or if
there's anything anyone can do for you." Hell no. If it's incurable and terminal, at least they can be informed- but many of us are left with way more questions than answers! Cancer patients were some of the first to be granted access to medical marijuana, and in all fifty states, provisions that limit the treatment of people with opiates and other powerful pain medications exempt cancer patients - after all, cancer is VERY painful for many people, and of course that pain deserves to be treated in the best way possible, right? The side-effects of cancer treatments are well-understood even by people who have never known anyone who's had it, because cancer is all over tv shows, movies and in the media.
- Many of our own doctors have left patients to Google "what is Ehlers Danlos Syndrome" after diagnosis, leaving us to imagine the worst, and giving us no direction or support after telling us "Hey, you have an incurable and permanent illness that will never get better and will likely get much worse." Unless you were a big fan of House, you've probably never heard Ehlers Danlos Syndrome said on television, let alone seen anyone in any sort of film who's living with it.
Going to the ER? Or a new doctor? When you tell the doctor there that you have EDS, half of them will roll their eyes at you or flat out say they have never heard of it. Most won't realize that this means certain antibiotics are off-limits, or that anesthesia and pain medications likely won't work properly, among dozens of other concerns they should have about how to treat you.
Many of us wish we could at LEAST have our pain validated by random strangers when we feel our worst, but the reality is that most people will have never heard of our condition or have ANY idea of the plethora of ways it negatively impacts your life. Sorry.
So... What Are My Options?
- Cancer at least, most types, have treatment options. Even if it's not a guarantee- there's a chance surgery, medication, radiation, chemo, could cure you. If you HAVE a treatable kind, but the treatment would be extensive, dangerous, or destroy your quality of life, you have the right to deny treatments and you can choose instead to die. Cancer that CAN be treated, often has a variety of treatments from surgeries to medications, radiation, chemotherapy, transplants, tumor removals, and many many more. When you are diagnosed with cancer, doctors make plans, follow-up appointments, surgery dates. You are offered support services, counseling, and a host of charities offer transportation, funding, even help for your living situation while you're in treatment.
- EDS patients have no options. When you are diagnosed with EDS, Doctors pretty much say "Okay... so, now we know what's wrong. But... why are you here? There's nothing we can really do for you." Many doctors are very hesitant to give pain medications, since many are often ineffective due to our genetic predisposition for them to not work properly - and even the medications that do work only do so for a period of time before they stop... which means that many doctors want to hold off even if your pain is EXTREMELY severe - because eventually, you'll run out of medications to try. There are NO treatments for Ehlers-Danlos Syndrome. The only thing they can do is try to assist with individual symptoms. I know that if many of us could give up a breast, or a limb, or even our reproductive organs or to have major brain surgery, or a very painful bone marrow transplant - we would jump at the chance to be allowed to return to an illness-free life - but none of that is possible. EDS is forever.
- If you have cancer, you can go to ANY hospital, and expect prompt treatment and immediate concern- even if all you are is nauseous from recent chemotherapy. You'll be admitted long enough for whatever treatment you need, and your concerns will be taken seriously.
- If you have EDS, you will LIKELY be treated like a psych patient or a drug addict, almost four times as often as you'll have your concerns heard, your pain treated appropriately, and even when you ARE treated like a human being, there's likely not much that can be done for many of the most common symptoms. Sure, they can reset your dislocated (insert joint here) - but they will likely send you home without pain medication, and that joint may very well dislocate again before you leave the parking lot. Best of luck. :-/
Treating the Mind and Body
- If you have cancer, there's a good chance that your doctors have already spoken to you about things like positive thinking, and may have sent you to a psycologist for an assesment of how you're coping with the news of your diagnosis and how you're handeling treatment. There are yoga groups and massages designed specifically for those undergoing cancer treatments and everyone agrees that spiritual health is so important.
-If you have Ehlers Danlos Syndrome, one of the most common things you'll face first is being prescribed physical therapy- yet most physical therapists want to treat us like everyone else- and things like stretching, yoga, strength training- these OFTEN only serve to WORSEN our condition and pain. Yoga and any stretching can cause pain and worsening dialocations and few doctors truly understand that Ehlers Danlos Syndrome is ALL CONSUMING and affects ALL areas of our lives, so often psycologists are only suggested if they suspect we're exaggerating or faking our symptons entirely! We can tape ourselves from head to toe, wear every splint and brace known to man, get a service dog, handicapped tags, use a wheel chair, a shower stool, but in the end- there's no treatment for EDS. There's pain management for those of us lucky enough to have doctors who care and understand- and there's coping. That's all there is for us.
Sure, it may be a case of "The grass is always greener ". Sometimes, when you are suffering endless frustration, dismissal from doctors, hell, not even a real diagnosis (I'm still waiting, over three years in, for disability income- if it wasn't for family and my husband, I'd have starved to death or committed suicide by now), so I can't IMAGINE how people who are more broke and who have LESS family support are able to handle this disorder. It's no joke.
Many of us suffer, day in, and day out, with severe pain that's akin to a cancer patients' suffering, and when we visit doctors, they tell us " EDS doesn't cause pain " or that were "drug seeking". If you had cancer and asked for pain relief- do you think any doctor would roll their eyes at you or claim you're not actually IN that much pain?
I'm in no way trying to trivialize cancer. Like many EDSers, I'm just hoping and wishing we might be more understood and have similar hope for things to be getting better, instead of just worse. So if you hear a chronic pain patient compare their journey with that of Cancer, please try to understand... it's not that we are trying to say that EDS is WORSE than Cancer -it's just that, simply put- everyone knows what Cancer is. Even little children see commercials and know it's a big scary illness.
It comes down to this - no one wants to have cancer or Ehlers Danlos Syndrome.
All we want is a little more compassion and understanding of what we deal with 24/7.
I wish there was a way to let people know "you should look for all these weird symptoms" and "If you're finding that all these strange things are happening to you - you MIGHT have Ehlers-Danlos Syndrome" - while the EDNF site is really good, much of the symptoms listed are just medical terms,and not necessarily things people can relate to.
I know there's a lot of things MANY of us have, but it doesn't seem as if doctors have 110% connected it to our EDS.... like Keratosis pilaris (red bumps on your skin on your arms and legs most often, which can appear purple when you're cold - it's common among EDSers). I'm trying to catalog all my problems from head to toe...I hope it will help my doctors (I'm planning to give it to them), plus, I'm hoping you guys reading who suffer from EDS can help do the same, so we can make a generalized "If you're noticing that you have a large number of these problems, you might want to talk to a geneticist."
Here are the things I've come up with from a thorough evaluation - but this list isn't complete and I'm sure I'll be adding things as I remember them.
My EDS related symptoms - from head to toe - starting with things noticed when I was a baby:
As a Baby:
-I was born with hips that seemed to have no natural stop - they were extremely floppy and could bend in every direction. By the time I could stand, i could and would often rotate my legs inward almost 360 degrees. I can STILL do this.
-I was very ahead of my age physically. I never needed my head/neck supported as an infant bc i could hold it up myself. - as a baby, I had incredible strength and could hold my head up and do push ups. I stood at four and a half months, pulling myself up, and then walked at barely over five months.
-(I've noticed a large number of these things in my son who is now four - he was incredibly ahead- crawling from the foot of our bed to the head at only 13 weeks - and the day he was born, he could lift his entire top-half into a push-up position and look ALL over the room, holding himself up for minutes. It freaked out the OBGYN so badly, he at first thought the baby he was seeing in our room WASN'T the one I'd just given birth to downstairs. He called in over a dozen people to witness the super-human baby whose head/neck and arms were SO strong.
-I was always a very advanced learner. Spoke in full sentences before 18 month, was reading full books by three,
and chaptered adult books by four and a half. I was offered to skip multiple grades in school (but passed to stay with my friends).
-I was VERY clumsy as a kid, with horribly toed-in walking, I tripped over my own feet often and they tried to put bar-shoes on me, but had to remove them because I walked so young.
-As a child, I always felt like my joints were SUPER loose, and I always felt like just sitting up /standing in line, etc was EXHAUSTING. This has only gotten much worse as I've gotten older.
Head / Hair / Brain:
-I'm a natural red-head with fine skin and freckles, which seems to be pretty common in EDS type-3. I've seen a LOT of red-heads.
-Accelerated Hair growth (my head-hair grows nearly 1.5" a month)
-Thin, fine, limp hair with a permanent part no matter what I do - my hair won't hold a perm, and resists dye. (This could be because of my red hair)
-Brain-fog, short-term memory problems with functional things- like I can't remember if I did something, or WHEN I did something. It's like my body doesn't remember what it's done. HOWEVER...
-I have incredible long-term memory - I can even remember many things that happened when I was just 8 months old in detail.
- I have an Eidetic memory for things I read and see. I can flip through a magazine, and then tell you what page the razor ad was on, or almost repeat an entire article word for word.
(For example: No one has EVER beat me at that bar-computer game where an image flashes, the faster you touch the screen, the faster the picture goes away, and then it asks you a bunch of questions about what you just saw - like how many spoons were on the table, or how many people were wearing sunglasses - to date, I've never gotten a single question wrong because my mind forms a complete photo almost instantly of what I saw, and I can recall it in incredible detail)
- I read incredibly fast and can type over 165 wpm
-ADHD symptoms that started in middle-school with impulse control issues, inability to sit still (which i still think was due to pain/discomfort/always looking for a more comfortable position - not necessarily hyperactivity)
-Oddly, I've almost never had a head-ache in my life, save a few times when I was really sick and had sinus pressure. (I realize how lucky I am).
-I have keratosis pilaris on my upper arms, thighs (above my knees on both upper legs) and along my jaw line. It causes the pores to get plugged up and red bumps. On my face, it causes bumps almost like acne but it's clearly not.
-I have a horrible time with picking, especially at my face because I cant stand that just washing/exfoliating doesnt clear it up, so I often pick, poke, squeeze, etc. The doctor can tell me all he wants that it makes it worse, but I cant stand having anything IN my skin.
-I have VERY fine blonde body-hair that's totally unnoticeable and almost invisible. As I hit my 30's, this fine peach fuzz has shown up along my jawline, my upper lip, and below and around my mouth - where the plugged skin is worse. Even though it's all but invisible, I've found that shaving it can help exfoliate the skin and does help.
-I soak in Epsom salts and exfoliate with apricot-shell and loofah oatmeal soaps which help reduce the keratosis pilaris.
-An illumask from Walmart REALLY helps with my skin on my face, to reduce redness, and Lotrimen (not because it's a fungus, but because the medication helps to break down the keratin plugs that form under the skin), and breaks down many of the painful lumps before they begin. I HIGHLY recommend this combination!
- I've never needed glasses, until my 30's - because my night vision and depth perception have become awful, very rapidly.
- I am red/green deficient from a head injury that happened when I was playing soccer at 13.
-I have floating spots that started when I was 31. Nothing is wrong with my eyes and doctors have yet to get an answer to why. It gets worse and then goes back to a minor inconvenience, but it never totally goes away. The spots seem to remain in the same spots, though sometimes they get larger and return to a small size. These floaters often make me think I'm seeing a bug or something in my vision, takes a second to remember it's just my eyes.
Anesthetics / Surgery Issues:
- Almost no general anesthesia works properly - it either wears off really fast or doesn't knock me out even in large doses. This has been observed by over a dozen different doctors.
- I've woken up during various surgeries, and my epidural wore off in less than 20 minutes - they barely had time to finish my tubal ligation, and I was fully able to move my legs before getting to the recovery room.
-Local anesthetics don't work at all- for dental procedures, I've had hundreds of shots, which sometimes numb near my eyeballs and parts of my upper face, but don't do anything for my mouth/teeth. I can feel almost all dental work if I'm awake.
-Pain medication does not work normally either, I can have abnormally large doses that someone my size shouldn't metabolize so quickly or be able to handle without seeming "high" or out of it. No one in my life except my family would have ANY clue that I take 100 mg extended release morphine every 12 hrs and 4 mg dilaudid for breakthrough pain because it doesn't affect my behavior or coordination at all. Even my eyes don't dilate severely like most people's do.
Mouth / Jaw / Teeth:
-Jaw locking problems - pops if I open wide enough. TMJ symptoms since I was a young teen.
-No dental anesthetics work or last. I've had HUNDREDS of shots of varying local anesthetics and I can still feel everything.
-Dental pain seems to affect me abnormally badly to the average person.
-I used to get a lot of mouth ulcers (NOT cold sores - little round open wounds inside my mouth, on my inner cheek, inside my lips, on the gums, tongue, under my tongue. Adding vitamin C to my diet seems to have worked to reduce these. My mom and son have the same problem.)
-Very high pallet
-Very crowded teeth with no room for all my teeth - had to have some pulled. Had braces for a few years because my teeth were crossing, and they moved immediately as soon as my retainer broke. Even though I now have some missing teeth - the teeth crowd together.
-My baby teeth never fell out and had to be pulled. I got my first loose tooth at NINE. Two of my baby teeth lasted until I was twenty four.
-I was missing eight adult teeth - one of my wisdom teeth and several of my other teeth both front and molars simply didn't exist.
- My jaw was broken when my wisdom teeth were pulled because the doctor must have not realized that my jaw would just dislocate when he opened my mouth far... my guess is that it easily dislocated from manual manipulation, and he just opened it too far and my jaw bone cracked length-wise. It was a LONG healing process, caused huge swelling and eight weeks of being unable to open my mouth. We had to pry my teeth open with a spoon to put pain medication in - no joke.
-While I was pregnant, my teeth which had NEVER had a cavity my entire life, suddenly began to crumble. Since then (I'm 33 now) - I've lost seven teeth, have two that are beyond repair, and have about a dozen untreated cavities. Fillings seem to fall out, and while root canals do kill the nerve- the teeth can't seem to last after, and regardless of caps, crowns, etc - every tooth I've had a root canal in, has completely fallen apart.
- Since this list was made, I had all of my molars pulled by an oral surgeon. The only teeth I have left are thirteen of my front teeth and those are breaking and will need to be pulled as well. :-(
Thyroid / Fatigue / Insomnia
My thyroid was diagnosed as slightly low functioning at 29 while I was pregnant, but not low enough for medication. By 31 I was low enough to need medication.
-The thyroid issues cause horrible fatigue - even when I take my medication properly, I still have issues with fatigue that's impossible to counter-act without medication (I take 30 mg Vyvanse which helps with memory-fog, short term memory, impulse control AND helps give me the energy to stay awake 12-16 hrs a day)
-I have waves of insomnia that I've yet to solve. I will not sleep normally for weeks, and then be unable to do anything BUT sleep for days. Vyvanse helps immensely but has severe side effects for the first 7-10 days on it and is VERY expensive.)
- Thyroid issues can and have affected my ability to have a second child, and we are now being treated for unexplained fertility issues five years after the birth of my son.
Neck / Throat:
- I have problems swallowing, and at times get a lump in my throat that I can't swallow. It lasts for hours, days, sometimes weeks. Doctors tell me its GERD but I've got no other symptoms of heartburn. Simply a lump that shows up for no reason and wont go away.
- I was finally diagnosed with an incompetent esophageal sphincter during an endoscopy recently - so apparently some stomach acid IS corroding my throat.
Spine / Back:
-Horrible posture - I can't sit up straight, feet on the floor, back straight for more than 40 seconds. I slump, I put my feet up on everything, I sit with my feet tucked under me or up on the dash - on the computer, I sit like a pretzel - it's almost absurd the positions I will get into to get "comfortable" - it's like my body naturally looks to rest on itself - even when I was a police officer, at the range, I'd hold my elbows against my belly to shoot, because holding my gun up was EXHAUSTING.
-I have horrible muscle spasms and knots in my back. Myofasical release massage helps IMMENSELY but only lasts 2-3 days or less because the spasms come right back. It's also really expensive, so I'm lucky if I can get a good massage once a month, sometimes less.
-To date, we've tried nearly every muscle relaxer that exists and none seem to work, OR they just knock me out for 16-20 hours which isn't practical. I'm not currently taking any muscle relaxers for this reason. I now have a prescription card in NJ for medical marijuana (as of July 2015) for muscle spasms, and it does help quite a bit.
-I have horrible ongoing low-back and tail-bone pain. When I was a police officer, I would shove my metal ticket book behind my low back as lumbar support in my car which helped immensely. As a child, I would sit in weird positions to avoid back pain. As an adult, l spend a LOT of time unable to get comfortable - I used to sleep curled up, now I sleep on my back, but I've yet to find a comfortable bed/surface or way to sleep that reduces my pain. A pillow between my knees DOES help. I have since gotten several Yogibo chairs and pillows, which help a lot - I even sleep in my large Yogobi couch from time to time!
-MRIs have to be upright because I'm terrible claustrophobic even with meds - they show some arthritic change but arent overly helpful because nothing is actively dislocated while the MRI is being done, so it doesnt show a whole lot. The first two orthopedists completely dismissed all my pain and problems because my MRI's didn't show any bulging disks, etc.
-I was diagnosed with crohns in summer 2008 while i was hospitalized on and off for seven weeks where I lived at the time. I still have specific foods, meds, etc that I avoid for flareups although some things (like fried foods) are just ALWAYS a no-no, no matter what.
-I've been off medication since my pregnancy in 2010 - and have been in remission since around mid 2009 though I still have have some IBS type symptoms occasionally.
-I cant take anti-inflammatories or NSAIDS as well other typical mild pain relievers. (the entire list is advil, tylenol, aspirin and naproxin) because they cause horrible GI pain, cramping and bleeding, and I'm pretty sure that's what caused or at least triggered the crohns to almost kill me in 2007.
- I have tried EVERY exclusion diet, and skipping gluten, dairy, citrus, meat, carbs, sugars, carbonation, etc etc etc doesn't work. I have literally done each one, for months, with NO results - none of these benefit anything.
-I have regular colonoscopies to be sure the Crohns is still in remission - the only problem is that
- I had severe GI slowdown and even a blockage that required surgery while on oxycodone, so I got off of it - it did help with the chronic pain, but wasn't worth the awful effects on my GI. During the time on 15mg oxycodone, I gained almost 60 lbs, destroyed my appetite and sense of taste, and was constantly battling digestive problems (related to stasis).
- I had one pregnancy and it was fairly normal in 2010.
- During my pregnancy, I was off all medication (I wasn't yet on pain medication as I was diagnosed with and my EDS got much worse at the end of, and after my pregnancy). My GI slowed down naturally, so the pregnancy almost seemed to "solve" all the problems with my crohns even though I'd stopped medications (I had done remicade treatments when first diagnosed, and later was on Asacol and Dicyclomine/Bentyl).
- I have horrible cramps that seem to be worse when my thyroid works properly, but I do have very short periods and very irregular cycles that have proven impossible to track.
- I was diagnosed with interstitial cystitis and have chronic and constant problems that feel like UTIs. I did have a problem with recurrent kidney infections which were solved with heavy IV antibiotic use - but the iv antibiotics caused permanent tendon damage (levoquin and cipro - at the time we didn't know that with EDS, I shouldn't be taking them).
-The cystitis causes chronic UTI symptoms, and I take AZO about fifteen days a month to help reduce the pain/burning/urgency. It's especially bad during that time of the month and is a pain in the ass in relation to my marriage for obvious reasons (though my husband is incredibly understanding). Sometimes I take AZO as a preventative because I *know* the symptoms are coming back.
-I have had awful problems with urgency, maybe I just wait too long to actually get up to go to the bathroom because of the chronic pain, but once I'm en route, its basically an emergency.
- I tried to do both the bladder installations (where they put the medication right into your bladder) plus take the oral meds (elmiron and elavil),but the oral medication made me violently vomit and no adjustments help- I absolutely can't take them. The bladder installations don't last long enough to be worth the inconvenience, humiliation and constant risk of infection, plus, they leave me with the same pain and burning and I still have to take AZO. So I just live on AZO and I'm hoping it's not killing me.
I THINK that's about it.... still adding to this as I think about more things...
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.