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.
For 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.
Over the last three months, I have had some horrible experiences that I would like to vent about.
Let's start with...
Cooper Reproductive Endocrinology.
We 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.
I'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 their 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.
The 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.
We'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 devastating 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 I'm paying $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.
My 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.
My 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.
The 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.
That 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.
I 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.
But that's not where the problems stopped.
Nope. That, my friend, would be WAY TOO EASY.
My 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.
So 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."
The 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...
Where 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!)
The following month... Guess what!? EXACT. SAME. NONSENSE.
I 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."
So 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, diarrhea, nausea, horrible intestinal cramping, light headedness, 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.
Without 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.
This 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?
A 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?
They 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.
I 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.
This 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).
End result? "We can do this, this one last time, but you need to come in Dec for a visit."
No 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.
During 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.
I 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.
For 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.
I 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.
Since 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.
So I go to my appointment in August - ( that month I had to be seen in a satellite 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.
The 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
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.
That alone is insane, unethical and INFURIATING.
I 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.
We 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."
The 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.
Let'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.
Two 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.
"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.
I 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.
After 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.
I 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 surplus. This month, I've got fourteen days left until refill... And only seven days of medication left.
The 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".
Excuse the fuck out of me?
I was TOLD to come back in if there were problems, and I DO, and I'm treated like garbage because...?
The 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."
I 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."
What 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.
I've been on a fairly high dose of extended release medication for SIX YEARS.
Can 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.
If I could do that- you STUPID BITCH - I Wouldn't be on it in the FIRST PLACE.
Apparently, 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.)
After 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.
When 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.
I'm like... "I guess I'll have to go to another office.. I can't be without medication for that long."
She tells me, "but then you'll see another provider and have the same issue as today. They won't want to change anything, they'll just refill your medications as they are... And you'll still need to see the doctor or your PA to discuss these issues."
I'm like.. "that sucks, but there's 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..."
(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?!)
She 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."
After 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."
So.... You've got NOTHING, BUT SUDDENLY... You FIND an appointment on the correct day?
All i could muster was "That would be great,thanks."
By 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.
And that's when the phone rings...
The reproductive Endocrinology doctors office screwed up my blood-work 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).
They want to know where I am... Because in Fridays, they all leave by 345 and they thought I was coming in.
I couldn't make this shit up, folks. I couldn't if I tried.
As 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.
What'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 don't take medicare,only later claiming they don't 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 don't follow the hours posted on their damn door!!
I'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.
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.