Goal 2-ON HOLD

I had PT today but it didn't go well. Not because of my knee or left hip but because everything else seemed to cause problems. I have been having horrible back pain lately that keeps me up most nights. My heating pad hasn't been providing enough relief either. I woke up and could barely get out of bed this morning! This is most likely due to the fact that I have been compensating for over a year and I am completely out of alignment. I have also been dealing with a shoulder that doesn't want to stay in place. I am pretty sure I actually dislocated it this weekend as I had to move it around to "pop" it back in. That was painful and simple movements cause sharp pain in the front of my shoulder. I can't lift anything with my left arm and certainly cannot use crutches anymore (which is a problem). My elbows continue to lock up and always hurt--thankfully most of the time it's not a sharp pain but a dull ache. And unfortunately I think my right hip has finally reached it's end point. It barely supports me at all (dislocates frequently), my groin pain is just as bad as the left used to be, and it pops with every step. I'd be back on crutches if it weren't for my shoulder. Dr. Shiple actually said that I should consider using a wheelchair, but given the fact that weight-bearing plays a HUGE role in regaining strength, it's not a realistic solution. For now, I am taking Valium for muscle spasms--and although I absolutely hate pain medications I have come to the conclusion that I don't have a choice anymore. I was prescribed Dilaudid because the Vicodin doesn't help.

Most of my therapy involves standing (weight-bearing and balance) and I was unable to stand today because of my right hip. I managed to do a balance exercise but Cam had to hold my right leg so that I didn't have to put any weight on it. I couldn't do most of my table exercises because I couldn't lift my legs without back or hip pain. Just lying on the table was painful. I worked on flexion for quite awhile but my fibula has been slipping in and out a place and it's a very uncomfortable (not to mention painful) feeling so it took me a long time to finish simple reps of 10.

My shoulder is causing major problems. In reality, I needed to have my right hip fixed 2 months ago--I have now reached the point of no return. Unfortunately given the instability of my shoulder and lack of quad strength I am in no shape to go through with the right hip surgery right now. I most likely need another surgery on my left shoulder and considering I will need to spend 10-12 weeks on crutches following my RPAO/scope, the shoulder surgery needs to be done before my hip is corrected. I just wish I only ever had to deal with 1 joint at a time but it can never be that simple!

I am traveling to Boston soon for a post-op appointment and will hopefully see another specialist at Children's who has experience with EDS patients. He worked on my knee with my surgeon, and has a specialty in shoulders. Children's Hospital of Boston really seems to be the perfect place for me and I am so thankful to have found a great team of surgeons who really care and understand my complicated case.

Hopefully in the next week or so I will have more answers and a better idea of what my upcoming schedule is going to be like.

On a positive and happy note- I got a beautiful irish throw blanket and I am in love with it! It says Eringobragh on the top and has a claddagh ring with the meaning written below- Friendship, Love, Loyalty!