Gotta start somewhere

After seeing a million and one blogs for people with EDS and other pain diseases, I decided I might as well do the same. It might help me keep my thoughts straight. It might be a good outlet. It might just be a lot of random ranting some days. Whatever it is, here it is.

I've had pain for as long as I can remember. Longer, actually, since my memory kind of sucks these days (I'm sure that'll come up again later). Everyone always told me to toughen up or suck it up or stop whining or that I was a hypochondriac. I gradually stopped talking about things that were bothering me. Sure, I was still sick more than most (colds, flu, injuries, etc), but I didn't talk about what I was really feeling, especially as I got older. But I still felt like something was really wrong and I was sure if someone knew about it, they would tell me there's a name for it, or at the very least, that they believe me, and that they don't think I'm just a wimp.

I think that's what bothers me the most. People think I'm being wimpy and weak and still call me a hypochondriac. My brother used to tell me if I would just go outside and actually do something, I wouldn't be sick all the time. But I never (physically) felt like going outside. My parents always told me to just go out with friends and do things and have fun and the shyness would go away. That might have been true, but I was still never comfortable and ached and things just never felt "quite right" somehow.

In college, I learned about something called Munchousen's (sp?) syndrome. For a while, I started to wonder if maybe I was just crazy and attention seeking to the point my brain was making my body feel things. After all, most people who have that have something in their history that set it off: a childhood illness, a family member with long-term illness, etc. Knowing I spent time in the hospital as a kid (heart defect, repaired when I was 3), was I just going crazy? But then how was I so rational about it? And Munchousen's patients tend to be subtly extreme: they research and find all kinds of ways to make themselves sick/hurt to get attention, without making it obvious that they're doing it intentionally. I never actually hurt myself. And I never wanted attention. I actually don't like the attention.
I plead temporary insanity on that one. Looking desperately for an answer will make you see Jesus in more than just a grilled cheese sandwich.

But I knew there was an answer out there. Whether I would find it or not, that was another question.

Pain got worse as I got older. I continued to ignore it. Occasionally, over the counter drugs, heat and ice, and bracing/splinting would help, but that's all I did. If anybody ever asked, I would blame the pain on work or the activity I was doing at school or something else strenuous (by then, I was a teen, and working as a nurse assistant in the summer, and involved in theatre and a few other activities at school, I liked to be active when possible).

In middle school, I noticed I hint of pain in my chest around the area where my open heart surgery incision was. Figuring it was from growing and the scar stretching, we (me and my mom) ignored it. A couple years later, we discovered the growth spurt had caused the sternal wires to stretch irregularly, and they needed to be removed. The pain didn't stop, though. It continued to get worse. For a few years, I went through therapies, treatments, a couple more surgeries, and everything else the doctors could think of to ease my chest discomfort. Everything showed that there was nothing physically wrong though, and that if I was actually feeling pain (yes, there was doubt from some as to if I was really in the pain I was saying...this is part of where I thought maybe I was just crazy, because people wanted me to think so), then I was just going to have to deal with it.
So I did. I was lead to believe there was nothing else to do.

In college, I get a job working in nursing care. A job I really enjoy. I get to care for people and help them, most in the last stages of their lives. It's a physically and emotionally draining job, but the enjoyment makes it worth it. But as the pain got worse, the enjoyment started to dwindle.
Again, I never said a thing. I love my patients and residents. And don't know what else I would do if I wasn't taking care of them.

A few years later, I'm 23. I'm in a new city, at a new job (same job requirements, different company). I work harder than every to disguise the pain I'm in. Some mornings, I get home in so much pain I'm in tears. And I sleep a lot more now. Part of that might have to do with the switch to night shift. I have good nights and bad nights. There are some shifts I breeze through and don't really think much about individual parts of my body hurting. There are other nights where I feel like my body is going to crumble, and I don't know how I'm going to make it until sunrise, much less through morning routine. And there are nights in between, where just a specific joint or group of joints hurt, very constantly for hours and hours.

It's not just at work, but work certainly exacerbates it. There are days I wake up in pain. There are days I have off and think of how great it will be to relax for a day, then end up feeling like crap anyway.

When I started working on my first manuscript a while back, I had an idea for a medical drama (of course, I'm me). There was a disease, on a long mental list, that sounded like it would be fun to research and fit the idea of what I was shooting for pretty well. So I started writing, and started researching. And researching. And researching.

And then the writing stopped. And the research became more intense. Things started sounding oddly familiar. This disease that was only supposed to be part of the story sounded like my life. I did some searching around for similar things and other topics, wondering if I was just reaching, grasping at straws, looking for answers where they really weren't. But this all looked too similar. Someone was writing about my life.

So I asked my doctor about Ehlers-Danlos Syndrome. I know it's not common. I know how strange it sounds to walk into a doctor's office and say you think you have a rare genetic disease, and that you back your theory up from internet research. But. I had to take a step. Because like I said, I stopped complaining a long time ago, so it's not like it's something anybody would have outright noticed. Especially because I don't think I'm all that symptomatic yet (my non-expert opinion).

My doctor asked a lot of questions (and in my nervous state, I had a hard time answering as articulately as I hoped I would), and proposed some ideas of her own (but did not throw mine out). We did routine blood work to check for systemic and autoimmune culprits, all coming back negative (lupus and rheumatoid arthritis were the big two we were focused on). She decided it would be best to send me to a rheumatologist, someone who specializes in joint pain and would be better able to define hypermobility, if that's what I have.
The day I got the referral packet in the mail (I was sent a referral letter with the doc's info, and I was supposed to make the appointment myself, for the purpose of easy scheduling), I was in an unusually intense amount of pain and already stressed out. When the receptionist told me that the earliest I could possibly be seen was in 2 months, I felt my guts turn inside out. But took that appointment (it will also be keeping me up past my bedtime that day, since I work nights and sleep during the day). After I hung up the phone, I broke down and bawled. A hard cry for a good 10 minutes.

Then sent my boyfriend a text message expressing my frustrations and venting. He called and offered to come over (he lives on the other side of the city) but I was starting to calm down and needed to get to bed, so I was okay just to talk to him then.

It's been hard going through all of this with him. I don't like being a sick girlfriend. I don't like that I'm not always comfortable in his arms (physically, that is...because always feel safe there). I don't like him worrying about me. I don't like that I feel like he pities me (I don't like anybody having pity for me). I don't like him thinking that I'm "sickly". I drew a short stick in life. That's all. God has this all figured out, and I trust that. But I know he doesn't understand. And that part is hard for me.

I haven't told him everything about this disease. On the off chance that I don't have it, that it's all some crazy coincidence and there's just something else wrong with me, I don't want to worry him that much just yet (already gave him a heart attack falling down the stairs last month...right in front of him). Don't want to worry anybody that much just yet. I have only mentioned to one other person that I suspect this. And I told my parents that there's a possibility that my joint pain is caused by a collagen problem.
Honestly not sure how I'm going to start the conversation if I am diagnosed. Going to leave that up to God, that's for sure.

.......I think I've just about poured my heart out enough for one day, and for one blog post. The only other thing I want to add is a list of symptoms (not all related to what I think to be EDS). I'm sure there will be more later; as I've said, I'm forgetful anymore.

From top to bottom:

Migraines
Myopia (nearsightedness, severe)
Jaw pain, jaw popping and clicking
Gum disease and bad teeth
Neck pain, neck pops
Shoulder pain, shoulders are "loose", shoulders pop and click
Elbow pain, elbows pop
Wrist, hand, finger pain, fingers feel "loose", fingers and thumbs occasionally sublux and dislocate, fingertips (distal joints) are hypermobile, all pop and click
Chest pain (originally thought to be related to surgeries and the like)
Hiatal hernia, GERD, IBS, slow GI motility (on bad days, causes choking)
Hip pain, hips feel "loose", hips pop
Knee pain, knees (knee caps) feel "loose", knees pop...possibly sublux
Ankles: minimal pain here, but frequent popping, and the only joint that ever seems to swell or become inflammed (more tired and achy from working hard, it seems....)
Feet and toes pain, some popping (great toe L foot 'grinds and crunches'), toes feel "loose", feet/toes never feel anchored to the floor
Stretchy and smooth/velvety skin (nothing world record breaking...but...): neck, hands arms, ribs
Delicate skin: bruises that take too long to heal, constant bruising doing nothing at all, skin tears and scratches from doing nothing traumatic

Clumsiness, losing my footing when I'm walking or standing normally, losing my balance for no reason, dropping things that are secure in my hand
Forgetfulness (can likely be chalked up to a too-high dose of Topamax...)
Trouble sleeping, trouble falling asleep, trouble staying asleep, staying in bed too long/feeling tired and worn out all the time
Appetite changes
Hypoglycemia, diagnosed as reactive hypoglycemia years ago, but it's never been consistent (some days, sugar does nothing to me, other days, no matter what I eat, I tank)


Like I said, I'm sure there are more, but this is what I know right now. And I should be done with this now, because I have more to worry about before the day is through.