Everyday Life with Chronic Pain
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.
-------- WARNING: Discussing Heavy Shit At Bed-Time --------
I WILL BE UP BLOGGING ALL damn night.
For the record: Not a good idea. I was exhausted when I laid down at 9pm. I thought "we're all nice and calm, let me address something minor while were both in a fine mood and maybe we can come up with a solution."
NOPE. MY husband went to sleep looking like a kicked puppy,and I then stayed up, unable to sleep, thinking over everything we'd discussed and becoming more and more frustrated and less and less able to sleep.
When my husband awakes from his nearly 18 hours of slumber, he has to leave very early for work so I knew we wouldn't have much time to chat, so...We tried to chat before bed -namely about how my husband and I love each other deeply, but don't "get" how the other thinks...and how it seems to leave our communication a blurry mess with a lot of misunderstandings.
In bringing this up, all I did was royally hurt his feelings....Ten minutes later, he's falling asleep
as if nothing happened, yet I'm in tears and I'm so upset that I can't sleep at all.
I realize despite taking 2-2mg alprazolam (aka Xanex 4gm)- but now the sun is up, and I started thinking, then I began writing (A solid nine hours ago) but I quickly realized I was finding far more questions than answers....
------- My Dysfunctional Part in all This ---------
As my husband is half asleep (It was only 8:30 PM when this discussion started, in all fairness, it's not as if I was trying to start this chat at 4am.) I get that he had a long day, but the reality is, so did I.
I was trying to explain how differently we think... And how, while we have a wonderful bond and a solid relationship,we definitely have certain times that we simply don't understate each other because our brains function in very different ways. As result, I want to dig a little deeper into how
my brain works, vs how my husband's brain works to help us understand each other better.
With the fundamental difference between my brain,(which has a High IQ - I have repeatedly been tested well above average, including exceeding a 1400 on my PSAT's in 7th grade and getting a near perfect score on the SAT's as a senior (1560 to be exact). Unfortunately, many people with high IQ's also have issues like ADD and ADHD, and I am definitely one of those people.
The main negative attributes that are brain-related (you could almost call it a flaw) that come along with ADHD (Attention-Deficit Hyperactivity Disorder) are symptoms such as I have a reduced ability to focus on one thought at a time, I have a very difficult time shutting my brain off when it's time to sleep, and when I am awake and alert, it's very difficult to stay on one collective topic of thoughts - I'll often forget what I was saying mid-sentence, or forget what TV show was on during the commercials. It takes a special person to live with and put up with me - I get that.
Some of the main issues of living with an ADHD brain is that it came be difficult to keep your focus on anything that doesn't particularly interest you, or especially if the person is overly tired.
As an example, while I am really interested in writing this article, it has taken me hours lo write due to the lack of focus, while I have a tendency to SPEED through mundane work,what with my inability to slow down and follow directions. I've heard that my ENTIRE LIFE. There's major issues with
concentration that comes along with ADHD, as well as some issues with impulsive behavior.
------- My Husband is Definitely from Mars ----------
So what are the differences between his brain and mine? Well, first of all, he has no trouble turning off when it's time to sleep. It endlessly frustrates me that he can sleep away entire days when he doesn't feel a pressing need to get up (IE - he doesn't have to work that day). He's late for everything, and has poor time management. Worse, he can't understand that I have trouble with many of these same issues because of my ADHD but rather than helping me, he tends to make things worse, and even worse than that, often applies the blame on me.
------ So we used Christmas as an Example, because it's always a hot-button issue around here. ----
I try all year to drop hints, to make it easy on him. I feel like I am a very easy person to shop for, I don't request or hope for outrageous things we can't afford, but I do sincerely wish for him to either ASK ME what I would like, or do a little thinking and researching rather than just taking the "easy" way out and shopping for me at the very last minute when he can't get 90% of the things I was hoping for. It's lead to several years in a row of disappointing Christmasses, Birthdays and Anniversaries.
...sometimes I flat out tell him what I want (which he hates)- But all the dropped hints fall on deaf ears and are as good as if I'd never spoken them. I'm REALLY easy to snoop around and figure out.
I have an amazon wish list pages deep, a Pinterest and dozens of Etsy favorites ( shops and items tagged) of everything from $2 items to $2000. It shouldn't take much to figure out a few small gifts I'd really find to be special. Receiving ANY of these items would shock and THRILL me on Valentine's, our anniversary, my birthday, or even Christmas. Sadly, we've gotten into the habit of not really giving each other gifts EXCEPT for Christmas, and that alone is depressing. As much as enjoy shopping, I really enjoy the occasional gift for no reason. Like when we go to the renaissance faire - not once has he bought me a rose. I've had literally hundreds of roses given to me at faires over the years, but never once from Justin. He just doesn't think that way.
I'm no diva and under $100 could go a long, long way.... In all our years together, I can honestly say he is the least emotional, least romantic and least thoughtful of the men I've dated in the GIFT giving department. (He's much more giving in an emotional, thoughtful, even sexual ways). But when it comes to buying presents... he pretty much stinks. :-(
I've gotten a craftsman multi-tool (that became useful a cop) and a tattoo certificate for Xmas from one Bf, another gave me a gun for our anniversary,and a motorcycle just to celebrate our tax returns, even my married gay bf got me ice cream gift certificates for cold stone card, but other than the occasional card, Justin isn't much of a present guy, and almost never for no reason unless it was a trash find. Sure, he brings home flowers left from weddings he works, but he'd bring them home to his mother, if he was still living at home with his folks. I am not fooled. Sorry honey.
---- He hates that I hate surprises ---
Truth is - I don't hate surprises. I hate the build up, the suspense.. and then being let down. Inevitably, I'm let down anytime someone says they are going to "surprise me". THAT is why I hate surprises so much.
Sadly - he gets FURIOUSLY angry that my Christmas Tradition started long, long ago-disappointment had reigned until I took over buying for myself a reasonable amount of things each year, with mom's credit card. She'd fork it over, I'd go spend a few hundred dollars - Don't get me wrong, I never went nuts, but I'd get some jeans, tops I liked, a neat trinket or two, and ta-da... I had a merry Christmas.
What it came down to was that I'm the eighth child, the last kid, and the only girl. Ten years
is the age gap between me and my brothers. I wasn't spoiled (on the holidays) - rather, I was all but entirely forgotten. So, since I was about ten, my mom (who loathed shopping anyway) would give me her card, I'd spend a few hundred bucks and boom -Christmas DONE-
I'd wrap my own gifts and call it a night. I'd always hated surprises anyway, and for years, relatives who couldn't remember my age had dumped dollar store "Barbie-knock-offs" and I got weird, hideous clothes often far too big, or other things I just generally couldn't use or didn't like (not because I'm picky or snobby, but because the person buying it put LESS than ZERO effort into their gift). I've always tried to be thoughtful of the person and mindful of what they'd really truly LIKE and USE...
As a little girl every year, l clearly wrote outs a list- no unicorns and "million dollar wishes" each year, but even so, I'd never get anything I'd ask for or want; All I wanted was some legos, maybe a new soccer ball, simple things, but those requests always ended up COMPLETELY IGNORED. And so I gave up on surprises and expectations and hopes, and just bought myself whatever it was that I wanted, while feeling guilt-free because then I could honestly ask people NOT give me gifts because I didn't need or want them, it made everything much more simple!
So I'd spent nearly my WHOLE life disappointed by the feeble attempts of people who never really cared what would make me happy, and nearly every gift I've ever been given by my family was so far from my tastes, eight sizes off, or simply something I would SWEAR was some re-gift of an item they had lying around that they KNEW I wouldn't need or want, but they'd wrap it up anyway. Depressing. My grandmother would always sneak each grand-kid $100- and every year my mom made me return all but $10 of it, claiming each of my cousins did the same. Come to find out years later - that was a bold faced lie! My aunts never made their kids fork over their Christmas money, just me!
So, starting then, and through today, I flat out choose my own gifts... I've learned to LOVE IT.
And then, in stark contrast, there's my husband, Justin: He LOATHES it...
...It's been three Craptastic-Christmases - (each one has resulted in someone in his family butt-hurt and angry for weeks, usually with Justin and I driving home yelling at each other,all while trying to keep quiet enough for the baby (he's three!) to sleep on the way home. I can't stand the family drama and ridiculous bickering the holidays bring out in families - Last year it was because I asked them to delete a particularly gross and unflattering photo of me, which apparently set off a temper that in turn, caused the photo sessions to end. Yay me, for screwing everything up for everyone!!
---- The Good Old Days ---
As a cop I was *NEVER* shocked by the spike in suicides...."Merry f'n holidays," we used to taunt each other as one shift would head out, while others went 10-8! "Jingle Bells, Corpses Smell, Brain Matter splatters Walls. Oh what fun, the shot gun's done, grey matter's on the walls, Hey!"
-- He tries, but... ---
Sigh. While he TRIES to put forth slightly more effort each year its hard to be upset with him but he really has stunk at gift-giving. Plus, he AND his family (who insist on buying me non-refundable clothing that is nowhere near my style or size).....Sigh. So I smile, nod, toss everything in a pile until my mom hauls it out to get picked and donated. That sucks. I don't like seeing people waste their money on me, I'd rather just not get a gift at all, you know?
Last year, I'd scrimped and saved and bought his gifts as far back as eight months. (On record, he's STILL never used the $300 in Broadway tickets I got him, agreeing to attend ANY SHOW, not a small feat for me and my low tolerance for crap I dislike.) Seriously, they are now three years old, I don't know if they are even any good or if he even knows where they are. How depressing. (and he's upset that I "beat him" to buying a picture frame I didn't even really care about? sigh.
Last year, for example, I laid off, but as Christmas approached I'd realized he hadn't bought me anything just five days before Christmas except the lego sets I'd bought and told him to go ahead and wrap for me. And then tonight I accidentally insulted a Christmas gift he'd *almost* gotten me last year (it turned out to be one of those "Gift of the Magi" type situations, sort of) -anyway in Nov 2013, I'd run across my Red Sox world series photo print (8x10") from 2004 and decided to put it somewhere safe.
But not long before last Christmas, while doing some thrift shopping, id found a funky CHEAP piece of art (the three wise men actually), in shiny 3D, set in a bad-ass gold sparkly frame- so i picked it out, eventually at home, ripped out the ugly art a few weeks before Xmas, glued in my Red Sox photo and hung up my work in our bedroom. Turns out, Justin was upset to see it....he had been planning to kidnap the photo and was thinking of having it framed for me.
I was like.... "what?" I mean, I love the Red Sox.. but this is just a photo that's been floating around since 2004. It wasn't anything I particularly prized, and he was very weirdly upset that I'd gone ahead and framed the photo before he got the chance.While it would have been a somewhat thoughtful idea - having the photo framed was NEVER high on my priory list.. It's a little creased, bought offline for $8, a reproduction, not signed and of no value except that I Iove the Sox. He didn't plan to have it signed or anything...just framed, to wrap as if it would shock and delight me as the highlight of my entire holiday. That's what I mean by "he doesn't get me."
Also, some things are nice gestures if you bring them home on a Tuesday in March, but make weird / creepy and even insulting Christmas gifts: Imagine my heartbreak when my stocking was filled with acne creams, buffers, lotions and worse, he'd clearly had them laying around for years. I was crushed... I was ALREADY feeling ugly...depressed and unwanted. I cried IN MY ROOM while everyone ate breakfast. He didn't know. I managed a "thanks" but it really bothered me.
--- And it's not just about Christmas gifts and such... ---
He simply doesn't understand my priorities, what I want in life, what I care about and what I feel like I really REALLY need. So, here he is hurt over this present that never even happened because I found a cheap frame first.....and I'm sad because the consignment sale check I'd worked my ASS OFF FOR...that thought we'd set aside for passports for my tubal reversal trip .....were apparently *blown* without my knowing.... He STILL hasn't filed our taxes even though that return is the ONLY HOPE OF GETTING TO MEXICO FOR MY TUBAL REVERSAL, and that I've made it quite clear if I'm not on hormone injections and trying for a baby come April, I'm giving up and were done, despite how very badly we've really wanted to have a second baby.
No wedding. We never had one, and just as I predicted - we never will, and he doesn't care. He worked a wedding the other night in the location we'd chose and posted about in on Facebook, tagging a friend saying "haven't been here since your wedding"- but not a single text to me saying how sad he is he wishes it could be us there. Hell, All five of my $10 and under engagement rings have gone in the trash after tarnishing or losing stones. It really makes a girl feel so VERY special when in THREE YEARS of marriage, HER HUSBAND hasn't found it a priority to tuck $5 here and $10 there so that maybe someday I could get a REAL RING.
I feel so insecure and unhappy that none of this seems to get through to him...that he doesnt understand how important ANY of this is to me;
1) Sometimes I feel like he married me out of pity because I was scared, pregnant and alone- just like his "best friend" pretty much accused him of doing a mere ten feet from the hospital bed where I laid with my newborn son, Adam whispered that Justin was "about to ruin his ENTIRE life" (and *yes*, I heard you, Adam.). Of course, that became a major bone of contention because I didn't want the best man at my wedding to be someone who doesn't even believe the groom should be marrying the bride, nor do I even want this guy AT my wedding since he's STILL never bothered to apologize for trying to take Justin into leaving me and not "ruining his life".
2) Because we had to marry to complete the adoption, it certainly feels like no one would actually care if and when we had a REAL wedding...
... And here three years later, my dress doesn't fit, and not once has he or anyone in his family expressed a single thought about us actually HAVING a wedding, so by now, I've accepted that this will never happen. All I wanted was for ONE thing to go "according to plan". I don't know a single other person who "eloped' or got married at the courthouse and did NOTHING for their wedding including not getting wedding rings. It's so depressing. I feel like a HUGE thing I should have gotten to do was just totally forgotten about forever.
3) And because no one cares about the wedding, it's clear he doesn't care that I have never had an engagement ring, let alone a wedding band. Sure, he got me a pretty (but completely inexpensive) ring for a placeholder, but he didn't make any effort in the three years since, to find me a ring - so to this day, I have no engagement ring and no wedding band. It's embarrassing. By now, I realize how irresponsible he is with money, and I realize that saving for or somehow borrowing for it simply isn't going to happen and at this point, I'm supposed to be okay that my name hasn't changed, and the most expensive ring I wear cost $4 from a yard sale. He was making upwards of 70k when we married. I knew he had school loans and credit card debt and a car to pay off (it's long since been.) but clearly giving me an engagement ring that didn't come from the hospital gift shop just isn't ANY priority. It's hard to feel important and valued when he doesn't even seem to notice just how much it eats at me that this is of NO importance to him.
And my husband....True- I'd never flat out said how important a real ring means to me, after all, he'd married me, fought the legal war and won, and adopted our son, and I felt I owed him everything and deserved nothing....
AFTER ALL... HIS OWN BEST FRIEND CALLED ME AND THE BABY "A COLOSSAL MISTAKE" just hours after giving birth. I have a hard time with the fact that Justin's (then) best friend, Adam had no problem coming to my labor and delivery room, and warned Justin, in FULL EAR-SHOT of me, less than three hours after giving birth, that by Justin taking on me and the baby as his own, he was "throwing his entire life away" and right then- essentially disowned him shortly after.
(Think I'm exaggerating?) The "gift" his friend Adam and his wife sent us for the baby was a book entitled (more or less) "Parenting the difficult and disobedient child." I guess that was their way of saying that I'm going to be a terrible mother and we'll raise a moronic monster. He and his wife had a child over a year ago now- we have received no invitation to visit (and drop that book back off to them for their son, Lmfao! I mean, wasn't that so sweet and thoughtful a gift in the first place from his best friend and his wife...Screw it, let them have it back and see how they feel about someone presuming their child will turn out to be a monster!)
(DON'T GET ME WRONG; No one told my husband how I had longed for a real proposal- the kind you share on Facebook with a close up of the ring .... I didn't want a flash mob, or anything ridiculous....but his original proposal to me was private, in bed actually, but I bawled like a baby... Hell, I was shocked anyone wanted ME, my baggage, our beautiful son (but a child neither of us had ever wanted to begin with)- i had been waiting for him to take Adam's Advice, wise up and leave us...)
I just remember going out to dinner days after we got engaged - we went to IHOP for father's day and everyone in his family was going on and on and wanted me to show off the ring... but I couldn't show them the ring... because just three days after giving it to me, almost all the shiny silver had worn off, andmy finger was deep green plus one of the stones was missing already.
I really don't mean to come across like a brat... but I just would really like my life to start having some things go right, and for Justin to understand how important this stuff is to me. I don't want a $10,000 ring, or a $60,000 wedding. But I do want a real ring, and I do want a wedding. I want the tubal reversal done before I'm too old and it's too late and too dangerous. I'm just sad that he doesn't seem to understand how much these things bother me.
Just like the Christmas gifts he can never seem to get the knack for. I just can't help but feeling like I'm never going to get the surgery paid for and done, a ring, the dress and the wedding if I don't find a way to do it all myself - and then what's the point? I just wish he could figure out how important this stuff is to me, and that he actually cared. :-(
I was 29 years old when I became pregnant - the specifics of the situation are a story for another time, but at that time, I was, by all accounts, a fairly healthy and very active person. I was a police officer, I raced BMX on the weekends, I rode a motorcycle regularly and went horseback riding every Sunday morning. I had a lot of "little accidents" and bruised easily plus I suffered with an unusually weak immune system, and I had lots of small things that seemed odd for someone my age - but I never would have dreamed that I would one day be completely disabled because of something I'd had all along.
It wouldn't be fair to say that being pregnant CAUSED me to become disabled, but had I not become pregnant, it's impossible to know if i would have ever been seriously affected by the Ehlers-Danlos Syndrome, especially to the extent that I am now. I may have gone through life just being sick more than the average person, being unable to tolerate the heat, and having an unusual number of "little issues" here and there with my health.
I didn't want to have a baby- I had never wanted kids, but all of that is an entirely separate story. Regardless, by the time I was nine months pregnant, my best friend was doing the best he good to take care of me as the swelling (of my legs and feet) had gotten so bad I could barely walk and all I wanted was the baby O-U-T. When we had gone to the hospital to have the baby, my birth plan was a scheduled c-section but my baby plan was open ended... I was fairly sure my son would be headed to an adoption agency as my life-plan had never included children and I had no intention of being a single parent.
During my pregnancy, I had moved to my home state of NJ to be with family - and with my best friend who I came home every other month or so to see during the ten years I'd lived in Florida. How we didn't know that we'd one day end up married neither of us can figure out in retrospect... and even though we never technically dated (about a week before our son's birth we discussed that by entering a relationship we were basically acknowledging that we were planning to get married - hell, hadn't what we'd been doing all that time we'd spent together over 14 years essentially been dating without the kissing and whatnot? Anyway, he is Kaedin's father, and he had been his daddy since our son was the size of a lima-bean growing in my belly even if we didn't actually know we'd choose in the end to become his parents.
Justin also had never wanted kids, I was dead-set against them, and despite our being the best friends for fourteen years, it wasn't until I moved home pregnant and in crisis that we fell in love... right there between the morning sickness and my ever-expanding mid-section, somehow it happened. The first time he told me that he thought I was beautiful was a slightly sideways comment about how pregnant women can be really beautiful. I got what he was throwing out there... neither of us had ever been the mushy type - after all, we had been platonic besties for over a decade, but somehow it worked.
And as it turned out, he is the most amazing father in the world - like I said, he was, even before we knew we'd be parenting the little munchkin. He was incredibly supportive, from foot rubs and staying up all night with me when I was feeling really awful to emotionally supporting me through the entire crisis that had caused the pregnancy in the first place. But my amazing husband (he's my husband now, he wasn't yet then) isn't what this blog is about... this is all about how my pregnancy caused me to become disabled.
Despite his best effort to keep me smiling and get me comfortable, even all of the foot-rubs, and back-rubs (Not to mention and how amazing to go from scared, alone and pregnant to having the most wonderful man in the world supporting you through a rough pregnancy ALL all the emotional trauma to boot), I was still getting more and more uncomfortable.
He would hold his hand on my ever-expanding belly to feel those insane kicks (and the hiccups my son had for almost an entire month before he was born!) and it was truly amazing to know how loved we both were - but still, I was in a LOT of pain by the time the 9-month mark rolled around. I hadn't gained much weight throughout the entire pregnancy (in retrospect, thank god for that!) - but all the sudden at eight months, it looked like I'd swallowed a basketball.
Due to the traumatic nature of my pregnancy, sadly, there are few pictures the documented the journey, so you'll have to take my word for it, but at seven months along, I was still getting the side-eye whenever I'd park in the "expectant mothers" spot, and yet less than a month later, right around Christmas, everyone (including myself) was quite positive I would burst at any moment, possibly with twins! So when the day finally came (and yes, we made the decision to keep our son and bring him home while daddy was holding him in the middle of my tubal-ligation... the big emotional mess of a decision I'd made as a kick-back from the trauma of the pregnancy in the first place...) - I thought that all that back pain, leg pain, etc would finally end.
I went home on pain-killers - for about ten days after my c-section and during that time felt pretty great. Of course, much it it was probably the fact that I was now engaged and in love with both of my amazing men... I remarkably feeling well for someone who had just had a human being ripped from their abdomen and I was actually up walking around quite a bit just hours after our son was born.
I had remembered the horror stories from my sister in law who couldn't walk for days afterwards, but none of that was the case. In all reality - had my digestive system responded better to the dilaudid, I probably could have gone home that next day, but instead we got snowed in and spent six blissful days with nurses and catered meals and we all snuggled together and slept in my hospital bed. (It's a pretty weird way to start a marriage, by the way... his family was all "So... you're not coming home after work because you're at the hospital with your new baby.... um....)... but again, THAT is a whole other story. :-)
Our First Family Photo (1/24/11): I was crying. Right before this photo was taken, my then fiance brought the baby over for my first look and said to me, "I think we need a car seat." Until that point, we hadn't decided that we would be parenting vs. my placing the baby for adoption as I'd been planning through my pregnancy, so this picture is incredibly special to us. I was so incredibly blown away that my best friend had fallen in love with our son so completely before I'd even had a chance to lay eyes on him.
The problem wasn't my body wasn't the c-section or the recovery afterwards, what actually "upset" my faulty collagen had started long before the surgery as my body was moving through the stages of pregnancy and preparing for labor. All the low-back pain and hip problems I'd been writing off as pregnancy-related weren't actually -they were foreshadowing.
The problem began to show itself in the weeks after the birth when the low-back pain from the pregnancy (it had crept up right around the eighth month) had never gone away... by early summer it had gotten so bad I was at my GP asking for pain medication and MRI and x-rays. Disappointing and confused by "minor arthritic change" being the only notable thing, I couldn't understand why my pain was only getting worse. And spreading. It seemed like my knees, my ankles, my shoulders... one at a time, every joint in my body was starting to slip out of place, to sit funny - I'd dislocate a hip during sex (sorry for the TMI, but I promise, no one was more traumatized than we were!) - I'd step down a step only to find that my ankle had slipped out of place and end up in a heap on the ground.... something was very wrong and it wasn't related to my now months-gone pregnancy. By now my son was standing on his own, and I was becoming less and less able to stand on my own, even sitting up for long periods was excruciating. While he was having tummy time, all I could do was lay flat on my back on a heating pad, taking twice the recommended dosage of Advil and nothing was helping.
Finally, almost a year after my son's birth- after various referrals and two orthopedists who told me that nothing was horribly wrong with my back, I saw an orthopedist who was able to give me some REAL answers. (For the record, my husband had already come to the right conclusion) But for me, this was a real specialist, who I really trusted, who could explain what no one else had figured out: I have Ehlers-Danlos Sydrome, Type III. Otherwise known as Hyper Mobility Syndrome, it's a genetic condition that causes faulty collagen, which is otherwise known as the glue that holds us all together. So here I was, feeling as if I was coming apart at the seams... and I really WAS! As upsetting as it is to have a genetic disorder and no hope for a cure - everyone I know who has been diagnosed to this day is just glad that they finally have answers.
Being told that it's not real, that it's all in your head - it's demeaning, it's downright abusive. To have doctor after doctor treat you as if you are a head-case while your body is being racked with such severe pain that your quality of life is becoming non existent, you just don't understand what that's like until you're living it. I was just glad to have something I could go home and Google, to read about, to learn about, to learn to cope. The first stage of accepting this condition is knowing you have it - so at least I had that.
And for the record, I really have to thank my orthopedist Dr. Levy from Sprains Strains and Fractures in Cherry Hill, NJ because he's an amazing person and he really may well have saved my life, because up until the point where I started getting proper treatment for this incredibly painful condition, it was not looking good for me.
I spent the first few days after the diagnosis in tears- at first I was terrified I had Type 4 (Vascular EDS, which is often deadly) - I do not, I have type III. But still -this has no cure. It's a lifetime of pain. The dislocations will never go away, they will never stop - surgery won't help. This is a condition you manage and learn to live with - but it's not something that you can change because it's faulty genetics. And worse... I could have passed it to my son. But now you know the end of the story, and you didn't really find out HOW I went from being a healthy happy 130 lb police officer to a 185 lb disabled woman with a three year old son... so let me explain how pregnancy (and later, an inept moron of a doctor at Virtua Hospital in Voorhees) destroyed my body...
(but first let me say... even had I known that this would be the outcome... we wouldn't trade our son for the world.)
HOW PREGNANCY CAUSES EDS SYMPTOMS TO GO AWRY ...
The relaxin hormone floods a woman's body at the end of pregnancy to prepare her hips and pelvis for birth - unfortunately that hormone loosens up ALL your joints, not just your hips and pelvis. A healthy women's body will slowly tighten back up, and her lax joints from pregnancy hormones will slowly go back into their normal place after labor as the healthy collagen does it's job after the pregnancy is over.
Unfortunately, my defective collagen couldn't help my body go back to where everything belonged. The pregnancy set me up for a lifetime of joint dislocations each and every time I move, even ever-so-slightly, the wrong way. If I reach for something in front of my, my shoulder can drop out of the socket. When I roll over in my sleep, my hip often slides in and out of socket more times than you flip your pillow to get to the cool side.
Every joint in my body regularly dislocates, except oddly, my elbows, which seem to have remained free from the effects of my hyper-mobility. Everything else in my body is affected; my jaw broke during surgery to pull my wisdom teeth, my fingers dislocate from typing, writing with a pencil is physically painful, my wrists snap from picking up my cell phone to look at my text messages, toes slide out of socket and are so cramped and painful the only way to put them back in place is to get on my feet and apply pressure to them with my whole body to "re-set" them into place, my ankles drop if I try to run (that's a joke - trust me, there's no running going on here!), my knees dislocate from staying bent on an airplane or at a movie, and more than anything, my hips.
My hips are why I walk funny - they are why I'm in horrible pain as i type this blog, they are why I can't sleep, why my back is constantly a huge tangle of painful knots.
My hips are the bane of my existence... That's what the collagen disorder, EDS Type-III is, after-all. As a child, they put these awful bar-shoes on my feet to try to stop me from "toe-ing in" as they called it. Doctors told my parents not to worry and that I'd "outgrow it" and not one specialist was concerned that I can rotate my feet well over 180 degrees inward, even walking with my feet facing forward and backward at once. Here's a photo to illustrate. And here's one that shows what I can do standing up...
It's quite typical for woman (and their doctors) to only put together all the puzzle-pieces of a lifetime of "little things" together after a pregnancy, when all the damage done by the relaxin begins to cause chronic pain. And that's what happened to me.
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.