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| This is me... I don't look particularly sick, do I? |
I have to apologize for my negative attitude lately. I don't mean to complain so much, but I am truly struggling right now and I'm realizing that no one really knows or understands why.
Totally my own fault, I'll admit it.
The thing is, I have some health issues that I don't like to talk about because:
#1. Until very recently I didn't have many answers.
and
#2. I'm tired. I'm tired of people thinking I'm overly-dramatic, a hypochondriac, or a crazy person. I'm tired of hearing through the grapevine that so-and-so said I'm a liar or an attention seeker, just making things up for sympathy. I'm tired of feeling like a weirdo. I know I don't look like I have anything wrong with me, but that doesn't make me a faker. It's hard enough living with something that's stealing away parts of your life and having no answers, but then to have everyone from doctors to random acquaintances being... well... the exact OPPOSITE of supportive, it's really quite demoralizing.
So I just don't talk about it.
However, in my new quest to be more honest about my life and struggles, I've decided to finally tell my story.
It's long, but here goes...
I've been in pain for as long as I can remember. When I was little I honestly didn't realize that it wasn't normal to be in constant pain, I thought everyone lived like that. I was tired all the time, I didn't have as much energy as all the other kids. I dreaded activities that took a lot of movement. I had my first migraine at age 7. I was pathetically skinny even though I ate a ton. I had palpitations and an incredibly fast heart rate. I was very clumsy, my ankles would give out for no reason, and it seemed like I could injure myself just walking down the street... BUT I was flexible. My arms and legs were hyper extended, I could fold myself in half backward, and put my elbows behind my head... Always great tricks to have in your repertoire as a kid ;)
Eventually, my mother realized that something was up and took me to the doctor.
Just before my 11th birthday I was diagnosed with graves disease, an autoimmune thyroid disorder that generally affects middle aged women.
After about 4 years on medication, (with my mom fighting the endocrinologist to keep her [the dr.] from "killing" my thyroid and dooming me to meds for the rest of my life), I finally went into remission! I've had a few relapses since, and I'm just waiting for the day that my thyroid gives out all together, but for the most part I've been very blessed in that area.
Unfortunately, going into remission didn't solve all my problems. I did feel a ton better, but I still hurt, I had headaches all the time, I was anxious and stressed, I felt sick every time I ate, and I still had palpitations, a racing heart beat when I exerted myself even a little, and weird chest pains.
My awesome mother took me to the doctor for so many random complaints over the years, for everything from the funny way I walked to the odd bruising that once appeared on my chin out of nowhere. I'm so very grateful she took my complaints seriously. However, I never found any answers to why I was the way I was.
My pediatrician did tests to rule out arthritis or other diseases as the cause of my joint pain... and came to the conclusion that it was most likely just growing pains. He was kind enough to send me to see an orthopedic specialist just to be sure.
After some x-rays and exams, HE told me that I was perfect. There was absolutely no reason that I should be in pain. As flattering as that was to hear, I was actually still in pain (apparently my body didn't get the memo) and he just sent me on my way with no other options or leads.
I was so frustrated.
In high school I was trying to be a ballerina and be on the ballroom dance team... I loved dancing so much, but it was tough. Besides the pain and little injuries it caused me, I started getting chest pains that were more than a little worrisome. Complications with the heart are scary!
Once again, we went to my pediatrician, and he sent us to the cardiologist. I had a bunch of tests done and even wore a heart monitor for a day, but they couldn't find anything really wrong. I should have been fine, as far as they could tell. The only really odd thing they noticed was that my heart rate tended to go from abnormally low to very high, but apparently that didn't mean much to them. So, the conclusion? It was probably just stress.
At this point I felt so defeated. I felt so incredibly guilty that my parents had spent time and money (which I knew they didn't have much of) on doctors and specialists, just to have nothing be wrong with me. I was afraid they'd be mad at me for wasting time and money with my silly problems that were apparently nothing. I started to think that maybe I WAS just making it up.
Maybe I just wanted attention so badly that I was actually creating these symptoms in my body.
Maybe it really was just stress and if I could just stop being so dumb and get over it, I'd be fine.
Or maybe I was just crazy.
I kind of gave up trying to figure out what was wrong for a long time and developed a complete distrust of medical professionals.
Then I started college. I was dancing for at least an hour or two every day trying to become the dancer I had always wanted to be, and trying to get good grades in some tough classes so I could get into the nursing program.
I was incredibly stressed, physically and mentally.
I started having fainting and near fainting spells, and at the insistence of concerned family members and friends, I went to the student health center. The doctor there told me I had syncope... or "fainting" in other words. He couldn't tell me why, but said it was probably stress.
Awesome.
One day after a pointe class I suddenly got this excruciating pain in my foot. I walked back to my dorm on the other side of campus in tears because it hurt so incredibly much.
My dear mommy took me to a chiropractor/sports specialist we knew from the ward and he told me that a bone had slipped out of place in my foot. He put it back and taped me up to keep it from happening again.
Now, I'm no doctor, but it seems to me that bones shouldn't just "slip" out willy nilly. I knew you could dislocated things if you had some trauma, but it was just a normal ballet class. Nothing special had happened. It seemed odd, but I just figured it was par for the course when it comes to living in my body.
In my short college dance career I went on to sublux a bone in my wrist on two more occasions and have dozens of various injuries, including years of achilles tendinosis that refused to heal.
*sigh* (though, I know I should be grateful I could do as much as I did!)
On the bright side, after some research on my own (thank you internet!) I did finally get a diagnosis of IBS to explain my stomach pains and how sick I feel all the time, which felt like an absolute triumph at the time. It was short lived, however. I realized eventually that there was not only no known cause or cure, but doctors really don't even know much about managing symptoms :/
This did lead me to more and more research which is how I ended up finding fibromyalgia and chronic fatigue syndrome. I read so much and got pretty excited because it seemed like such a good fit. So many of the odd associated health issues that come along with fibro seemed to line up with my list of complaints.
But once again, fibromyalgia and chronic fatigue have no real known cause, many doctors just treat them like a "junk" diagnosis when they don't know what is really going on. Some doctors think they are just caused by stress and are "all in your head"
So honestly, even with the fibro answer, I kind of felt like I was no better off than when I started.
I've struggled so much feeling like a failure as a spouse because I have a hard time "doing it all". I have felt so bad because I can't do things that Karl enjoys with him, like dodge ball or anything physical.
Anyway, (relatively) recently, a relative of mine contacted me on Facebook and told me about a rare genetic disorder that she and her daughters have called Ehlers-Danlos syndrome (type 3) because she thought I might have it too. It causes a defect in a person's collagen which makes people hypermobile (or double jointed and very flexible, in other words), but also causes wide spread pain, easy injuring, frequent dislocations/subluxations, skin issues, dysautonomia (problems with the nervous system and blood pressure/heart stuff), easy bruising, IBS, anxiety, and more. It's often misdiagnosed in as fibromyalgia and "growing pains" in children. Collagen is a component of every system in the body, so if it's faulty, it has an effect on the entire body.
All the stories I've read from people with this disease have been so similar to mine! It's been like the pieces of my life long puzzle have been falling into place, I just needed this one last piece to make it all make sense. I really, truly believe that I've finally found my answer.
I want so much to get a diagnosis but currently my insurance doesn't cover anything besides primary care visits and I can't afford to pay for a specialist or any testing on my own. And then again, not many doctors are well informed about EDS and the thought of talking to another doctor and being brushed off, talked over, or told I'm fine, gives me enormous amounts of anxiety.
So here I am.
Right now I'm having a very hard time. I do have good periods of time where my symptoms are so mild I start to wonder if I've just been a huge baby in the past.... and then I get hit with a "flare" and I remember exactly why I "thought" I was suffering.
I'm currently in the middle of one of those flares.
My pain has been so bad lately that even with pain killers taking the edge off, I still can't sleep because of the pain. I lie awake at night knowing that any minute one of the little ones is going to be up, but all I can do is hurt. I get lightheaded when I stand up and I get headaches and feel weak and sick if I go out in the heat. I feel so sick all the time and I have no energy to play with Evie like she wants me to. I have a type of tendonitis in my wrist that won't go away, and as I take care of my kiddos I can feel my other wrist starting to go too. I dread Declan's cries because the thought of lifting him one more time makes my arms want to fall off. He's only three and a half months, but he's already too heavy for me. It all wouldn't be so bad if I didn't have two little ones to take care of, but I do.
I feel so guilty that I can't take care of them the way they deserve. I feel guilty that we eat out so much because I know it's horrible for us, but I have no energy to cook AND take care of little ones all day. I feel guilty because I just stay at home all day and I still can't take care of everything. I feel horrible for needing to depend on my hubby so much when he's already got so much on his plate. He didn't know what he was getting into when he married me. I feel guilty knowing that if I do have EDS, then my children have a 50% chance of having it too. I don't want them to have this life. I feel like a failure as a mother, as a spouse, and even as a living person.
I think all the mental stuff is probably worse than the pain right now...
On the other hand, I think Karl and my babies are the only reason I'm still here. The only reason I haven't crawled into bed and stayed there until I withered away to nothing is the fact that they need me. It's all so hard, but they need me, and I love them so much.
Anyway... that was long. If you made it, congratulations! And thank you :)
I'm not saying all this for pity, though I guess that wouldn't be so bad, lol, I really just want, for the first time in my life, to have someone understand. To have someone know what I go through on a regular basis. To have people "get" that when I look put together, it's an incredible feat, and when I seem like I'm sitting around being lazy, it's all I can do to keep myself in one piece.
I know I don't look sick or like I should be struggling, but I am.
And I hate it.
