Monday, January 12, 2009

More Discoveries

Flying airplanes are back and I don't have to use my hands when crossing my right leg or push off on thighs when getting up. The left leg cross and getting up are far from graceful, but I never really was.

Thursday, January 8, 2009

Follow Up

I had my follow up appt. today with my Myositis doc and it felt good to be at the other side of the treatment. I remember leaving the office in November pretty nervous and unsure of it all. After hearing that I do indeed have SRP for sure, I am glad that I went forward and didn't waste any time. Once again I got to show my progress and the challenging places- hip flexors when sitting and neck when lying down still don't do much of anything. Everything else I scored well in comparison.
Interesting to find out that there was no other Myositis patient that did HiCy. The doc had me confused with Myasthenia Gravis. Oh well- I was glad to have that positive image of a guy doing black diamonds on the slopes as I was starting treatment. I am hoping to try some bunny slopes soon...somewhere with noooo trees close-by.
Next visit in March I will do an MRI of the thigh to really see what the "damage" is.

Wednesday, January 7, 2009

2 Month Post-HiCy

Reality Check

After all the excitement of going through with the treatment and seeing some exciting progress, reality has set in. I have a long way to go in terms of physical therapy and will need to wait awhile to see how much muscle I really can regain. There are many bad habits I need to break in how my body has compensated for the weakness. Retraining the body to move like it should and not do what is easiest, is my challenge. Every move is intentional and connected to a thought.

A lot of work is needed in the legs and back to be able to climb large steps without a railing and to be able to pull up my upper body when getting up from the ground. Doing bridges, lunges, squats, and forward bending. Arms can now be lifted overhead when lying down and we are up to 2lbs. Walking backwards is easier. Walking forwards is good after I have been walking for awhile to warm up but still takes a conscious effort to not lean back, to not swing legs, to engage the right muscles. I don't feel as nervous walking unassisted but do always sigh a bit of relief when I reach something to push or a hand of support.

After HiCy you take an antibiotic for 6 months and I hope to change to something other than Bactrim since my skin is very itchy. CK is a little lower but still around 930.

So improvement is real but I always strive for more. I sometimes push too much at therapy and then the fatigue follows. Finding the balance...