Thursday, March 28, 2013

What's this!?

Good evening, everyone! Ashley here! With my Birthday coming up. I thought I would write about something very close to me, which impacts my life day in and day out. For some of you, this will be repeat information.

This is going to be a rather short post, and I hope you'll forgive me. It's going to take me a long time to write. You see, I'm having a pain day. This is something that I am used to typically, but after pregnancy, my pain days are at least twice as bad as they used to be. I can blame this on hormones from pregnancy. In particular, relaxin. This is the one that looses all of your ligaments so that your hips and pelvic bones spread, making room for baby to come down the birth canal. Now, for the average mommy, this is very useful. For me, and for mommies like me, this is simply unnecessary and kind of damaging. I have EDS - Ehlers-Danlos Syndrome. There are several subtypes, but I am going to talk to you about my type, type III, which is the hypermobile type. Looking back, I have had symptoms my whole life, but because so little is known about EDS, it is very rarely diagnosed. Notice I did not say that it is simply rare. Right now, yes, it is considered rare, but I think that it's actually more common that anyone even knows. But that's a conversation for a different day.

Moving on...

I am going to summarize the best that I can for you so that it doesn't get too confusing and so that my hands don't freeze up completely. Basically, my body doesn't make enough collagen. Collagen is what makes things "tight" and stay together. I'm sure you've seen those anti-aging creams. Well, what makes them work, is the collagen... It gives your skin the ability to "bounce back"... It essentially tightens any skin that is on its way to loosening and wrinkling. Well... My body doesn't produce enough on the inside. I guess you could say that my ligaments are like a 90 year old's skin: super loose and just not holding up all that well. So what does this mean to the inside of my body? This means that my ligaments are unable to their job, which is holding my bones in joint. For example, if you were to raise your arm and throw a ball, as you rotate your arm, your ligaments allow your shoulder bones to rotate in the joint by stretching just enough for the motion to be completed, but then tighten up to make sure that the bones don't go beyond exactly what they need to. In my body, doing something as simple as throwing a ball over-handed can be dangerous and painful. Because I don't make enough collagen, if I don't throw a certain way (which I have taught myself through a lot of trial and error), my shoulder could subluxation (slip out) or dislocate all together. I've experienced subluxation of my shoulder doing something even as simple as pulling back the shower curtain. Now, after pregnancy and having had relaxin coursing through my body, ALL of my ligaments and joints are even more lax than they ever used to be.

Another issue with EDS, is that chronic pain is a daily experience. But some days are simply worse than others. Today was the worst day I think I have ever had. I woke up this morning in pain, but pushed through and was still able to get baby C to the sitter and get myself off to work. But as I was driving in the car, it hit. I suddenly realized that my EVERY single joint (and I literally mean every one... From shoulders and knees to knuckles and my jaw) hurt unlike I had ever felt. One thing that is very common for me on a pain day, is that my hands - especially my right hand (of course) - seizes up and I find it difficult to control my fingers or move them, or grip things. This makes life very difficult and frustrating. The best way I can describe this pain, is that feel like my body is made of glass, with cracks and fractures all over, and if anyone or anything touches me to abruptly, I might just shatter into a million pieces. It has gotten better as the day has gone by, but my neck is still killing me. I have been having trouble looking down, up or to the right. I mentioned my pain at physical therapy this afternoon, and my physical therapist checked things out and said that a few of my vertebrae were rotating and moving outward. Thankfully, she was able to gently move things back into place for the most part. Now we just have to hope it all stays. I went on with my exercises for the day, even though there wasn't a whole lot that I was able to do.

Oh man... There is so much more that I wish I could share with you, but my hands are beginning to seize up. I just wanted to add how much more frustrating this all is now that I have my little man. It's so frustrating when I feel like I can't take care of him. And it's so upsetting when I'm in too much pain to play with him on the floor or hold him for snuggles. Baby wearing does help with this, but he's getting bigger and he wants to see my face and interact with me, which I love! Now, every day is not like this. I do feel pain every day, but it's not always like this. And I am aware that it could be so much worse. There are so many of my friends from my support group who do have it worse. But it's still frustrating.

I hate EDS. And as much as I have dreamed of what it might be like to live life without it, it is so much a part of who I am that I can't imagine not having it!

Sorry I don't have an OOTD picture today... I promise I will have one next week! :)

Zebra hugs and love from the crunchy momma!


  1. You are far one of the toughest mamas I have known. I admire you and wish you don't have to deal with this. Feel better.

  2. Awww, thanks, Ashley! It's really just all that I have known. So I don't think I'm so much tougher than most other mommas. My situation may be a little unique, but mostly it's frustrating. I'm sure you can understand that. :) and thank you, I'm going a bit better today. You know, I would really love to hear your point of view as a momma, if you would be interested in sharing with us!

    - Ashley