Life With Ehlers-Danlos Syndrome - April 8, 2014

So... got some difficult news today. I know that's an ominous start to any post, but I want to get this off my chest and the easiest way for me to do that is usually for me to write it out. So here we go.

First off. I am NOT dying. Just so you don't tear through this post in panicked fear. 

Many of you probably already know that back in 2009 I went to Mayo Clinic and finally got a diagnosis for my life-long medical complications. That diagnosis turned out to be Ehlers-Danlos Type 3 - Hypermobility Type. I am not the only one affected in my family - far from it. Many of you probably also know that I suffer from chronic pain and a terrible injury in my shoulder, which leaves me debilitated rather often. 

A couple of years ago I fought a new battle to try an determine what exactly was wrong with said shoulder. I went through umpteen tests, injections, painful therapies, and doctors appointments before having this conversation:

Me: "What's wrong with my shoulder?"

Doctor: "Well, you have a significant tear in the cartilage. However, that's not what's causing the pain. The pain is most likely coming from your neck."

Me: "So what's wrong with my neck?"

Doctor: "I don't know. I'm a shoulder doctor. That's beyond my expertise."

Sing it with me now... "The shoulder bone's connected to the... what?!"

I wish I were kidding, but sadly I'm not. I was referred to the Alaska Spine Institute who told me very rudely when I called, "Don't call us. We'll call you." At that point, I hit the end of my endurance with the battle and gave up yet again. I can only fight the doctors for answers for so long at one time before I have to give myself an emotional and mental break from their stupidity. So for the last couple of years I have just continued to fight the good fight through the pain like I have for the last 11 years. 

Well... recently my world changed once again.

For the past couple of months I have been waking up from my sleep with my muscles so twisted and spasmed around my spine that I can barely sit up. There are four distinct spots that have hurt to the touch for years, but if you left them alone were relatively fine. Now... no such luck. Additionally, I went on a recent trip alone (during which I stupidly carried my luggage) and went from having to take my pain meds on a bad day, to having to take them every 8 hours just to function. 

After returning from my trip the pain has been excruciating and my exhaustion at an all time high. I have had to call into work becuase I literally don't have the strength to get out of bed at times. All of this drove me back to the doctors, in a desperate attempt to find the ever elusive answer. 

Well, today... I got the beginning of an answer. 

In a nutshell, my spine is terribly injured and unstable in numerous ways, thus causing the nearly immobilizing pain. It's apparently layer upon layer of various injuries due to the EDS. They could only take a peek at my neck today, but were able to see 3-5 major tears in the supporting cartilage around the bones. Thus my bones are moving around in all kinds of ways they're not supposed to. I sat there on the little metal stool as the doctor pointed to the moving X-ray saying things like...

"You see this here... look the bone slides completely off the side over there."

"You see this.. that's obviously torn."

"This here is why your hands go numb when you look at the ceiling."

"See how this woman's spine is curved? Now look at yours..."

I'm not complaining about the doctor. He's a wonderful man and a medical genius - the same one that saved my father's life with the stimulator surgery all those years ago. I thank the lord I got in to see him. His moving X-ray machine can only show the movement errors and obvious injuries in my neck. They plan to do a full series of MRIs on my entire spine this week (to make sure there are not ruptured disks further down). 

Then he got into the tough stuff.

"I'm sorry to say... these injuries are what's causing your pain. But you're likely to get more of them, and there is nothing we can do to repair them. They are what they are, and will always be."

"No more carrying bags. Ever. No more holding a phone to your ear - or God forbid, between your head and shoulder. Get a bluetooth. No more looking up if you don't have to. Move your monitors down at work. Drop your TV down at home. Looking up will only bring you pain."

"Whether your disks are injured or not, you're likely going to need to fuse some of your spine in the next 15-20 years."

Me: "How will I know when? I'm already in pain. What do I look for?"

"Oh, you'll know. It may come on slowly, maybe not. You'll lose functions you're used to. You won't be able to grip a jar with one of your hands. You'll have a needle-like sensation, or complete numbness, in one of your hands or arms. You may get slightly lame in one of your legs. That sort of thing. That's when we'll have to intervene."

All I could think about was that article in the Washington Post I read a few weeks ago about the young woman who just had her spine fused and was hapy about it. I kept thinking, "God. Thank the Lord I'm not as bad as her." Surprise!

When I left his office I cried for a long time. This means a few more lifestyle changes. One of which means I no longer get to carry bags around (purse included). I don't know why that little fact was so particularly hard for me. Maybe it's part of my identity as a woman (and shouldn't be I know). Maybe it's fear of being that much more obviously different to strangers passing me on the street. Maybe it's the pity in their eyes that no longer makes me feel beautiful. Maybe it's because I don't want someone asking me where I'm traveling to every hour because I'm tugging my carry-on around behind me.

Regardless... I let myself have a good little sulk and then did what has to be done. I picked myself up and said, "Fine. I can do this." It has even inspired me to change my birthday present request. I'd never used Pinterest before, but just started myself a new account. I made a board called "Wheeled Purses" and set to work. [http://www.pinterest.com/christianeallis/wheeled-purses] Turns out, there are a lot of wheeled bags that are designed to look just like a woman's purse, and they'll be a good enough size to tote the things I don't have enough hands to carry (since I'm mostly walking with a cane lately). You wouldn't believe how hard it is to use a cane, drag a carry-on bag, and still manage to figure out how to hold the cup of lemonade you bought while you're "hobbling at full speed" back to the office.

Anyway... I didn't write this note so that you would feel sorry for me. I wrote it because it helps me. I wrote it because I want to share with you a little bit of what it's like to live with a disease like mine, and assure you that I'm not giving up. God gave me a brilliant mind, quick tongue, and gift for communication. This useless body just keeps me humble. 

I won't be stopped. 

 

(c) 2014 Christiane Allison