Monday, October 7, 2013

The Stripe

Happy Monday, everyone! I hope I find you all very well and deeply enjoying fall weather and prepping for Holidays! For my Canadian friends... I hope your Thanksgiving preparations are going well and that you all have wonderful holidays this week! 

This week I'm going to talk a little bit more about my EDS. Ehlers-Danlos Syndrome. I've talked about it before, and have given a brief overview about what exactly it is, but I'll give another brief explanation before I move on, just in case anyone missed it or was confused before. I have Ehlers-Danlos Syndrome, type III. This is the hyper-mobile type, which means I'm very... "bendy". My ligaments are very, very loose, resulting in instability in my joints, which causes frequent subluxations (slipping of the joint) and dislocations. 
*This is a VERY brief description

If you remember, about a month and a half ago, I talked about dislocating my shoulder. All I had done was wake up that morning, roll over and reach my right arm across my body to scratch my left arm... POP! Everything went hot and numb and the pain, though familiar, was gradually increasing and intense. And then I stood up. I shouldn't have stood up, but I had to get C out of his crib. I walked in front of my mirror and my shoulder was slumping and I realized I couldn't really move my arm and it was pretty much completely numb. Long story short, I ended up in the ER after getting my shoulder back in and feeling it slip back out. Because of the ER doctor, I did end up seeing my Primary Care Physician (PCP) and seeking a referral to an Orthopedist. My PCP confirmed that my shoulder seemed pretty damaged and she could see some "nasty, extra movement... even more than normal for you". 

So... last week, I finally got to see an Ortho. And!!!! I love her! She has not only heard of EDS, she is actually knowledgeable on the subject. I can tell you (and my EDS friends can confirm) for a fact that finding a doctor who is actually knowledgeable about EDS, as well compassionate toward the patient is so incredibly rare, we expect to need to show up to appointments with definitions, ready to provide a demonstration and still walk away feeling dissatisfied. In fact, the last time I met a doctor who had heard of EDS, was when I dislocated my left shoulder last year. This one was a much more "normal" EDS dislocation. (I will explain later.) This doctor told me that I seemed to have gotten my shoulder back in and should be fine, but how was my pain? I told him that my pain was awful. I had just dislocated and reduced my shoulder all on my own! He said "well, if you really do have EDS, you would be used to this kind of pain. Take some tylenol when you get home." I was floored. I felt like a crazy hypochondriac and as though I was just being pathetic. But no... I really was in pain. I detested that doctor for what he did to my confidence level, so when I met my Ortho last week, I was on cloud nine! My usual "test" to see if a doctor knows anything about EDS is as follows...

Doc: "What's going on today?"
Me: "Well, I have EDS. Do you know what that is?"
Doc: "No. I don't think so. Tell me about it. What does EDS stand for?" (typical response)
Me: "Ehlers-Danlos Syndrome." And then I go on to explain what it is and how it impacts my life, to which I have gotten my share of non-believing looks and doubtful glances. This is when I know that I have just wasted my time. 

But my ortho... this is what SHE said...

Ortho: "So, you hurt your shoulder? How did you injure it?"
Me: "Well, I have EDS. Do you know what that is?"
Ortho: "I don't... wait... you mean Ehlers-Danlos Syndrome?"
Me: "Yes!"
Ortho: "Okay... what type are you?" 
Me: "III... Hyper-mobile."

I tell you, I could have kissed her in that moment! Although my PCP did not know what EDS was when I first saw her, I called ahead to warn her about my POTS and EDS, and when I showed up for my first appointment, she walked into the room with books and all kinds of research. I knew I'd be keeping her forever. :) But this Ortho... she is just awesome. I have never talked face to face with any health care professionals, or really anyone at all, who I didn't have to stop talking to every few seconds to offer an explanation or definition. 

 So, anyway... the Ortho did an exam and tested my mobility and range of motion for different types of potential damage. Before I could even finish the test - and in fact, I couldn't - she said that I gave her a positive for labrum damage. The labrum is the cartilage that is inside of the shoulder joint itself. She suspects that I tore my labrum when my shoulder dislocated. However, she did say that in examining my shoulder blade movement, both were bad, but my left was still worse. What's so bizarre about my situation this time around, is that my right shoulder is acting abnormally both for having suffered a dislocation, but also for an EDSer who has just had a dislocation. In a non-EDSer who has suffered a dislocation, the "typical" additional injury that is expected, is to the major ligament in the shoulder; in an EDSer, additional injury is actually not expected in any typical case, mostly because everything is so "stretchy" and usually allows for everything to move back into place without much fight. But this time, I sincerely did have a much harder time getting my shoulder back in. I never had dislocated my right shoulder before, so I'm not sure if this has anything to do with that, although I have had it slip several times in my life. So, the next step for me is to head back to physical therapy (I'm great with it since I get to keep my old physical therapist!), and then to an MRI. After we've gotten a better look at my labrum, we will be able to tell for sure if there is a tear or not. If it's torn, it would most certainly be a surgical issue. However, if it's not, it could or could not be a surgical issue and my Ortho is open to seeing what my PT has to say about what could be done for me as well as how much could be done for me in physical therapy. So, I'm a bit anxious to get this all figured out so I can start to feel better. At this point, I'm just frustrated. It's so hard to lift things, and having baby C by myself is a challenge. Though, at this point I am a little thankful that he's such a peanut! ;)

Speaking of Baby C... He had a check up today... a bit late, but that's just how it goes sometimes! So, even though he's 10 months old this week, it was still his 9 month well-baby check up. Like I said, he's a peanut! But he is growing consistently! He's currently a whopping 16lbs, 7oz and 27 inches long with a 17 inch head! Kid's got a melon on those shoulders. hehe! He also got the first half of his first flu shot. We have to take him back next month to get the second half. I also got the shot today, and it always makes me sleepy! Poor C had a rough afternoon. Yesterday, he cut a new tooth, today he's constipated, AND he got a shot! Poor buddy! He handled the shot well, though. He just got mad for a few seconds and then he was fine. But he was pretty grumpy all afternoon and I can't blame him. I just feel bad, because this time, he is constipated enough that we're going to need to do a suppository. I feel badly for him and for myself. 

Well, that's all I have the energy for today! Next week I want to talk to you all about the other side of EDS: The caregiver's (for lack of a better term) story. 

I hope you all have a beautiful evening and a wonderful Tuesday! 

Zebra love and hugs,
Ashley :)

1 comment:

  1. That's one thing I hate doing is explaining every time what it is. You think as doctors they would know but it's not something you hear all the time. I do get excited when someone knows what I'm talking about. I'm glad you found a doctor that knows and understands you. I'm sorry your shoulder is hurting. I pop mine in and out almost every time going to bed and getting up but not enough for extensive damage.