On Monday, I started Physical Therapy... JP Dr told me that the PT was going to be my new best friend for life... between my arthritis and my EDS, I supposedly will require some form or fashion of PT for, like, forever...and the PT confirmed this at the appointment. Oh joy.
The PT lady was great - not only does she have experience working with people who have Ehlers-Danlos Syndrome and arthritis, she shared with me that she has had her own sturggles with autoimmune disease, abdominal surgery, and steroids (she was on steroids for over 15 years with many failed taper attempts, but has finally gotten off of them!), so it was really nice to talk to someone who "gets" it, not just professionally...but also because she's been there. She also has a certification in doing myofascial release on people who have adhesion and scar tissue! How perfect is that? It's like God hand-picked her to be my PT. Just another everyday miracle in my life!
So... the appointment was a bit overwhelming because there is such a very long laundry list of problems that need work! We will have to work really slowly due to my level of pain, fatigue, my dysautonomia and just the screwed up nature of my poor body! The last thing we want is to make anything worse!
The first goals are to start aquatic therapy, and decrease my pain level by doing myofascial release on the scar tissue in my abdomen from all my surgeries. She believes that the pain and scar tissue in my abdomen and pelvis from all the inflammation, disease, abscesses, and surgeries has caused me to change the way I hold my body (in addition to being so loose-jointed from EDS), and the postural changes are contributing to my chronic neck and shoulder pain. She also thinks that at least some of my neck and shoulder pain is what's called "referred pain." That's when a problem in one part of your body is manifested as pain in a different part of your body - the classic example is someone having pain in their left shoulder or arm from a heart attack. Jack Black, my pain doctor, has also suggested that my neck and shoulder pain might be referred pain. I'm willing to try anything at this point... I'll blog about this soon, but over the summer, my pain has been a HUGE issue, and we've had to TRIPLE my pain meds, and despite this, I am still hurting a LOT and rarely able to sleep through the night. Not. Fun. Anyways, I will be very excited to see if this will help my pain!
Since literally every joint in my body is affected by arthritis and EDS, we will eventually build up to working on other joints and muscles, and I'll get exercises and stuff to do on my own. Maintaining my mobility, building strength, and protecting my joints to preserving as much function as possible are very important priorities.
I'm thankful that I have finally been stable for long enough to start pursuing things like PT that will (hopefully) help me get stronger and healthier! Since 2009, I feel like I've been in "survival mode:" bouncing from one crisis to the next, barely recovering from one surgery when another major illness would land me in the hospital again. It has been NINE MONTHS since I've been admitted to the hospital, which is a record for me since I got diagnosed with Ulcerative colitis back in 2007. I've also been major surgery-free (and also minor procedure free - I haven't even had to go under anesthesia) for 16 months, which is the longest I've gone by FAR since I started having surgeries back in 2009. While life is far from easy or pain-free, and while I still struggle on a daily basis with a LOT of symptoms and difficulties, things are so much better than they have been in the past. I wake up every day and I thank God for the level of health He's allowing me right now! I don't take it for granted, and I pray that I use each day for His glory!