Monday, September 19, 2005

how to advocate for an ass-whipping

So I now have a new rehab team.

My physical therapist couldn't get me past walking with a cane (April), my prosthetist wasn't effectively dealing with the issue that my prosthesis was so ill-fitting that I was getting sores (June), and my physiatrist (rehab physician) literally up and left his post with less than one week's notice (August). Once that happened, the (very wonderful) physiatrist temporarily filling his post referred me to the Rehabiliation Center at Kaiser Vallejo. I went there September 6 for an "Amputee Clinic". This is typically where a physiatrist, a prosthetist and a physical therapist all sit in the same room and assess things together.

I took a stroll (ok, a stroll on crutches...what does one call that, anyway?) through the rehab facility before my appointment, and would have cried from sadness had I not been so excited. I can't believe I wasn't referred there months ago. But really. I dont want to get stuck being pissed off about that. I'd rather enjoy being so glad to finally be there.

Anyhow...I do want to share more about that day in the amputee clinic, especially more about the new prosthetist, but that's for another post. What I want to write about today is what kind of pushing I had to do to get a subsequent PT (physical therapy) appointment.

You don't get a PT appt without the physiatrist authorizing it, or "writing a prescription" for it. So I asked the physiatrist, (nicknamed) Dr.Sam, if I could meet with the new physical therapist while waiting for my new prosthesis/socket to be built. He said he didn't think it was neccessary, and that there really wasn't anything more they could do for me until after I got the new leg. I sat with that edict for a good long day and just couldn't shake how wrong it felt.

Here's how I see it: The expectation is that I will get this new prosthesis and I will wear it every single day, for as long as I can tolerate it each day, and work as hard as I can to get walking again. Well, folks...I haven't really walked in 18 months. Basically, I use crutches (different muscle groups), and I sit in a wheelchair. I had a few months where I wore a prosthesis on occasion, but it never fit well, and I mostly sat in it, not walked in it, and when I did walk it was sloppy. MY BUTT IS OUT OF SHAPE. Figuratively and literally. Those muscles haven't been used at all. AND nobody has EVER given me a strengthening routine to use in preparation for walking again!

SO. I emailed Dr.Sam and told him this: That when I was in the hospital rehabilitating from the accident, they never gave me much in the way of a routine for my residual limb/stump/remaining leg/whatever-you-wanna-call-it. This was because my pelvis was fractured in the accident too, and I wasn't supposed to do much until the orthopedic surgeon cleared me. Once I got clearance, I had already been discharged and was at home. I was recieving some in home care at the time, but wasn't given a workout to follow. I was just told to sleep on my stomach so my thigh socket wouldn't get contracted (stiff and unable to extend fully open). The next time I was given physical therapy, it was after I got the 2nd prosthesis, and it was gait training (learning to walk)...but still, no real exercises to get strong aside from the walking itself! I told Dr.Sam in the email that I wanted to meet the challenge of walking head on, and not be totally unprepared in 4 weeks or so on "New Leg Day". I promised to make good use of any PT hours he would give me and that I would follow any routine given to me. I told him that I wanted to be supported in being successful. And yay--he gave me what I asked for. He wrote back that he set up a prescription for Pre-Prosthetic PT.

I was very proud of myself that day. And it also really made me wonder (once again) how people navigate the frickin' medical system if they don't know how to trust their guts, or get a second opinion, and then advocate for their needs! Argh. And I say "people" but I am one of those people!! I am constantly wondering how I am supposed to advocate for myself when I don't even know what it is I'm advocating FOR half the time! THIS IS NEW! And prior to this accident, the most I'd ever been to a doctor for a "condition" is when I was pregnant! Aye aye aye.

SO. This the next thing that happens: the PT then calls to say she's received the prescription but doesn't think I needed any PT, until I get the new leg and all...since I'm active and I'm a dancer and all..... *sigh* so I had to go through the whole danged plea again....but once she got the news that I had never been given an exercise routine, she too, heard me and set me up for her next available appointment.

Which is today.

So I've advocated to get my ass whipped back into shape (I'm sure my sweetheart will appreciate that, being that it's gotten a littly lumpy and he's an assman and all LOL). I just need to actually DO the routine she gives me. I need to give this walking thing one more try, and at 110%. If I can't succeed at wearing a prosthesis and walking this time, I'm not sure it will be too easy to muster up the desire to attempt it again. But I don't think it's fair of me to come to that conclusion and give it up if I haven't tried my hardest. That end result would be me deciding to just do life on one leg with crutches. Screw it. I'm used to it by now anyhow, it's been a year and half since I lost my leg. But I keep thinking to myself, "if there are above the knee amputees like me out there doing triathalons, it shouldn't be asking much to be able to walk, now should it??"