This is the first trip ever that I have traveled as a disabled person. I have usually been able to keep things under wraps and mobility has been manageable with rest and pain medication. I am reaching the point where my mobility is really being affected because of pain, clicking and stiffness in my sacroiliac joint. It has been affecting both sides lately but is more prominent on my right with my reconstructed knee. Also, I am having constant muscle twitching in my legs (various muscles on both legs) that is quite bothersome and actually keeps me awake. I am dealing with very specific pain in my neck, thumb, shoulders, feet and pinky. The most disabling is my SI joint pain. It isn't a classic lower back pain (the kind you can spasm and get from overwork or whatever) this is distinctive and the only real way to get around was using my "Jimmy Walker". For once I had to use handicapped facilities in restrooms and get the feel of what having an extra "thing" (whether wheelchair or walker) felt like. People and most places were very accomodating with handicapped ramps, handicapped bathroom stalls big enough to fit a walker into and cabbies willing to stowe the walker in their trunks without much grumbling. The airports were very accomodating and stowed my walker at the gate and had it waiting for me as soon as I deplaned. We had very tight airport connections going from Albany -- Clevaland -- Las Vegas and amazingly, we were able to get to our proper connecting flights in Cleveland with the help of those speedy motorized carts. We came awful close to missing a flight home but the cart guy got us to our gate in time.
I learned a lot about disabled traveling this time--a lot. I learned that there is nothing to be ashamed of in using a walker. It's a tool much like my intermittent catheters are. Just one of those things that makes life a lot more normal for me. I am not ashamed ... I am proud that I have the guts to get out there and just do what has to be done ... and that is comprised of enjoying life and being thankful.
I feel though that I have to get this SI joint thingee checked out by my MS doctor who might recommend a rheumatologist for a check up. I used to see one a long time ago while stationed in Philadelphia as a Franciscan. I just want to make sure that I am not on a more progressive MS path and if I am, what are the best choices for me at this point?
One thing is for sure, I want to really try to start exercising and loosening up and using my inversion table to stretch out my spine (which feels SOOOOOO good). Once the weather gets better, I will get back on my bicycle and make a better commitment to it. Yee-haw.
My lungs are on hold until April when we look at another CT scan and my MS neuro appointment is in the beginning of February. I have some talking to do with Dr. Pandey to see what I can do to keep things as stable as possible.