Just Another Day in the Life of EDS

The past couple of months have been a mixed bag for my daughter Emily. She had been doing really good with her pain levels from Ehlers-Danlos/ Hypermobility. We decided it would be a good time to take advantage of physical therapy for her shoulder. She continually dislocates it and we really wanted to get the muscles around it stronger.

So we (really she) began physical therapy. I love her P.T.! He is so awesome! He discovered that her shoulder joint in her left shoulder and the muscles around it were so loose that they weren’t even holding her shoulder in the right place. Wow! No wonder she pops it out all the time!  She learned how to pop it back in from watching Dance Moms!  True story!  The exercises began and she did really good. She was sore and when he started working on the small muscles she was even more sore. But she was persevering.

Then we got an email from a coach that she dreamed of playing for asking her to play on her team for middle school volleyball. She jumped on it! That meant tougher workouts plus physical therapy. I felt crazy for letting her do this.  It was tough on her. I mean tough! She would come home swollen, bruised and in tons of pain some days, but she pushed through the pain and was doing amazing and her volleyball skills were becoming wicked awesome. Then right before we were to leave for the East Coast Homeschool Basketball National Championships, her knees started swelling; especially her right knee.

She was in so much pain she wound up using crutches for a couple of days on our trip to take the pressure off her knee. She also had swelling, bruising and severe muscle spasms. We wound having to put her on a muscle relaxer at night and ice her knees down along with massages at bedtime. During the day we gave her medicine for pain and kept her leg propped up everywhere we went. She also borrowed my knee brace from when I blew out my knee. She smiled all week and managed to suffer through the pain with her friends and had a blast.  Thank God it was her sister playing basketball and not her!  Her friends were great and kept her smiling all week.  The only times she complained was when she and I were alone and at bedtime.  It ripped my heart out. Thankfully by the end of the week she was much better.

But she’s had pain off and on since and this week was another bad week. OMG! Now what? Can this child not catch a break? She was having a lot of knee pain with the added addition of severe back pain. She was all hunched over for most of the week and couldn’t stand up straight. We missed a lot of school time (thank God we homeschool, so we can make it up).  She wound up missing a day of volleyball practice on her worst day, which really upset her.  Normally she just pushes through the pain, but she just couldn’t.  She had to give in to her body.  It’s so hard to watch your child in pain and know there isn’t much you can do. She wound up sleeping most of the worst day away and even when she was awake, she was in the bed. I felt so bad for her.  More ice packs, heating pads and pain meds.  Yuck!

Next day, I broke down and took her to our chiropractor. I know, it’s usually a no-no for EDS with Hypermobility. But he’s a good friend and couldn’t stand her in pain either. It worked! Her back was much better! But due to missing a practice, she didn’t start or play very much during her volleyball game. That’s how it goes and we understand that. But she just broke down in the car ride home. Not because she was upset at the coach; she totally got why she couldn’t play. She was mad at her body. Why did she have to have this unfair disease? Why does her body have to fight against her? It was all I could do to keep from crying myself. She was mad and rightfully so.  I just let her have her moment to vent, held back my tears and told her I understood.  I’m so proud of her; even though she was in pain, she played that day and will again and again.  She loves volleyball and she won’t let this get the best of her.  She just perseveres!

Today we went to the orthopedist to get her knee checked out. I’m so glad we did! We found out that she has Patella Tendonitis in both knees. This is really common and her x-rays were fab! No sign of damage, no wear and tear, and her joints looked great! Huge concern for this disease; especially if you’re an athlete. The last thing you want to hear is that you’ve damaged your joint. They gave her a fancy knee brace/sleeve to wear during volleyball and anytime she feels she needs it and told her to use a capsaicin rub on her knees before practice/games and ice down after. Then we were taught how to tell if it was flaring up again. The doc was great! He actually knew about her disease! 

He even told us that this, of course was due to her EDS/Hypermobility and that anytime she stresses that tendon it’s going to flare up. But that it’s really not much more than anyone that stresses the same tendon. But because of hypermobility, it just makes it more prone to it.  We also learned  that she has about the same odd of blowing out her ACL as someone that doesn’t have the disease.  What’s funny is her sister doesn’t have it and has had ACL replacement surgery because she blew out hers!   That may not sound good, but think about it for a moment and you’ll realize it’s really good news.  He also wants to add weight training for her knees into her physical therapy. I think we just might have to put in a home gym! 

I know it’s just another day in the life of having EDS/Hypermobility, but for me as a mom it was a day of reassurance; that having her play sports is the right thing to do. Every doctor we’ve spoken to reaffirms that when everyone else tells us we’re crazy. She must have a life. She must have something to look back on and say, “I did that and it was fun.”   The doctor told us today as all of the other ones have, “You have two choices.  Either let her have a life and be a kid and do what she loves or have her sit on the bench and watch her life and everyone else’s flash before her eyes while she just watches.”  She chooses to participate and not sit out on her life.  I’m so proud of her!