Showing my Stripes

So… It’s been about a month since I last wrote and I apologize for the delay! I have so many ideas that I want to share with you all, but I have had very little energy with which to do it… So… First I will jot a little update for you all.

This past month has not been without its difficulties (physically).

I’ve been putting up with a troublesome shoulder that finally gave out on me. Allow me to explain…

A few months ago, I was out at the local ice rink, working a shift for one of those lovely folks who runs it. I reached for a bin of ice skates, and I hear this awful popping sound and feel this hot, excruciating pain… My left shoulder went out. Now… It didn’t seem so bad at the time – perhaps because I was panicked that this happened in public – so I just popped it right back in. Over the next two months, I realized that it gone out much more than I had realized at the time, as it proceeded to click and pop in the joint every time I moved my arm away from my body. Obviously, I was not thrilled.

Fast forward to a few weeks ago…

The clicking and popping on my shoulder was starting to be accompanied by pain, but still… Without any health insurance to speak of, it was nothing I couldn’t handle. Until one day when I was sitting at work and just minding my own business and the phone rang. My phone sits on my right and I talk on the phone with my left hand. So… As I always do… I reached my left arm across my body to pick up the phone, when I heard a NASTY <crack! It was awful! Pain instantly shot through my entire arm, all the way down to my finger tips. All I wanted to do at that moment was cry out in pain… And release a few choice words into the atmosphere. I wrapped up my conversation on the phone, and then turned my attention to my shoulder. “Did you hear that!?”, I asked my co-worker, A. “No, but you’re pale. Are you okay?” “My shoulder popped!” A had known about the trouble I had been having with my shoulder, since she was working with me at the ice rink on the day that it went out and started causing me trouble. I tried to move my arm around and see if I could relieve any of the pain in my shoulder. Nothing helped; every movement was followed by a deep and painful popping in my joint. Great, I don’t have insurance. What am I gonna freaking do now? I was so mad at myself for not being more careful! Then again, I was just answering the phone! Ugh!

Over the next week or so, I started to experience more and more pain in my shoulder and started to realize the limited use I had. Finally, when I was sitting on the couch one afternoon and sobbing from the sudden and intense wave of pain shooting through my arm, I decided that it was time to ask for help. I called various clinics around town, and was disappointed to learn that we don’t have a single free clinic. Once, I was even laughed at when I asked. Finally, I was on the line with an urgent care clinic, and found someone kind to speak with. After explaining my situation, I was encouraged to come in and apply for the discount card program that they were offering. After running around town a bit to jump through all of the necessary hoops, I was in an office, sitting down with a very kind man and filling out paperwork. Bless this man… He did everything he could to get me on the best plan possible, but I still barely qualified. He was so kind and he expressed his frustration in my defense. These people were simply wonderful and I was so relieved to be there!

Finally, I was being called to see the doctor. The nurse checked me in, recorded all of my meds (I think he ran out of room) 😉 and then left me to wait for the doc. Sitting there, waiting, my heart began to race. The last time I tried to explain EDS to a doctor, he told me I was just depressed and maybe needed therapy. I was suddenly very nervous! The doctor entered. He was young. Very young. I mean… I know I look young, but… I felt like I could have been his older sister. He looked REALLY young. I could tell that he was also new. I started explaining my situation and said “EDS type 3, hypermobility type.” “I don’t know what that is.” My heart sank. “It’s Ehlers-Danlos Syndrome”, I explained. “Oh! I have a friend who has the classical type. Okay… Let’s take a look at you.” My heart jumped! Seriously!? I couldn’t believe it!!! In my little town!? Finally! This guy still didn’t know a whole lot about all of the small details of EDS, but he did know how to examine me properly, as opposed to someone without EDS. What was wonderful about this experience, was that he truly listened to me and understood that I definitely know more about my body than he does, and that I am the expert in this situation, being that I have more than one rare, chronic disorder. He felt around and took a listen and suddenly knew EXACTLY what was wrong.

“It sounds like the first time your shoulder went out a few months ago, it was a lot more severe than you thought and it never went all the way back into place. Since then, the bone has been grinding on the edge of the joint and weakening the bone and the muscle. When you reached across your body the way you did, you fractured a bone near your rotator cuff.”

Say what, now!? Now wonder it had been killing me! Now came the moment that seriously bummed me out…
As a patient with chronic pain and many other health problems, I am constantly searching for a doctor that is the “whole package”. Man… This guy was SO close. Until this happened…

“So, what should I do for pain? It’s pretty awful.” “Well, you should isolate like you have been, but I’m sending you withs a sling for a few days. Other than that, ice it, heat it and take ibuprofen and Advil.” “Well, I’ve been doing that, but it hasn’t been helping at all.” He just nodded his head. “Well, if you have EDS, you should pretty much be used to pain by now.” EXCUSE ME? I don’t remember how the rest of the conversation went. I just remember that he said he was making a note in case I had to come back, so that they would know my situation and how to examine me. Still, I was so disappointed. I remember saying one more thing before I left. “Do you have any other questions?” “Yes… Could you do me a favor? Please, please learn more about EDS. I know it’s rare and you may not see very many EDS patients, but no one here has ever even heard of it and I need help.” “Sure.”

So… For a few days I rocked that sling and MADE it look cute! It was frustrating and my shoulder is still weak, so I still have to be pretty cautious. But that meeting, though disappointing in the end, gave me hope. I was also a wake up call for me… Sort of a reminder that I really am that fragile. In fact, I got another small reminder just two days ago…

Not only are folks with EDS fragile, we have very poor proprioception. This is the awareness that one has of their body in relation to the world surrounding us. This is why EDS patients will, oftentimes, seem so clumsy. (I know that I have been my whole life.) So, this has lead to many stubbed toes, bruises on elbows from running into doorways, bruises on shins from walking into coffee tables, bruises on hips from locating desks, and bruises on my head from opening car doors on my face… Yes… It happens more often than you think it would.

So… Two days ago, I’m getting ready for work. I wasn’t running behind or anything; I was just doing my normal thing. I woke up, brushed my teeth, fixed my hair, went to the living room, turned on the lamp, turned around and ran into the kitty’s scratch post. Just my normal thing for the day. Oh… But this time I didn’t run into any furniture in the dark, on my way to the lamp. But still… I ran into the kitty’s scratch post. The base of this thing, though small, is terribly solid, and I whacked three smaller toes really good! In fact, it took me to the floor, holding my foot and trying not to yelp and wake up M. As I go to stand up, my blasted left shoulder pops again! Just dandy, right? Oh man… You have no idea. I hurry to finish getting ready, because NOW I’m running behind. As I am driving to work, I notice how much it’s hurting to push on the gas pedal. (my right foot contained the suffering toes – of course!) I make it to work, limp inside as quickly as I can, and start about my normal routine for the day. About an hour later, I notice how much my pinky toe is still throbbing. I look down to see that it is HUGE! I mean… Ridiculously huge! Great, I think. I broke it. I just know it. Of course I did! Sure enough… Two days later, it’s still desperately swollen, purple, black and green and buddy taped to the next toe. Yes, I still limp a bit, but I just call it my swagger.

The most upsetting thing about this? I got a new dress for Easter to match my really cute peep toe, silver heels! 😦 alas, I will live to wear the beautiful shoes another day, and my pedicure did survive. But still… Darn you, you blasted fragile body!!!!

Much love and Zebra hugs to all! Have a wonderful Easter and love each other! 🙂