She’s Got Legs…

…which don’t work as well as they used to and that’s a big frustration – more on that below.

…that are totally hairless, like my head! (And while I wait eagerly for signs of growth on my still bald pate, which woman among you wouldn’t wish her legs would stay smooth forever?)

Back to the update:

I am doing well overall and staying healthy. A Physical Therapist has been coming for home visits for several weeks. Working with her and doing the trunk and arm exercises on my own, those muscles are getting stronger but at a slower pace than I would like. My hands, arms and trunk are weaker than they should be, but feel close to where they were before the transplant.

My legs, though, are another story: lack of strength and an increase in stiffness are problematic. I didn’t realize how much I used the bit of strength still in my legs for the transfers I did. They are weaker now – probably at least partly due to non-use/atrophy – and more stiff, and the result is that I can’t get in or out of bed or get pants up or down by myself. That means I am dependent on Rick for my morning and evening routine. The problem is that my legs will only get stronger if the muscles get work and I can’t do the work by myself and there isn’t time with the therapist because she’s working on my trunk muscles/sitting balance as well as transfers with a transfer board. The best therapy I can think of is two-hour sessions at Pushing Boundaries (formerly NextSteps) in Redmond, where I’ve gone before, but getting there regularly would be another hurdle. (I stopped going when I stopped being able to drive myself. Darren is my driver these days, which works out well for both of us, but I don’t know how long I can count on him before he gets regular employment.)

Rick and I are in a daily routine where he works from home in the morning so he can get me out of bed and into some pants. He usually leaves by nine and still gets home in time to fix dinner for us. On sunny days he’s been getting in some good bike riding before dinner. And then I can’t get ready for and into bed without him. As you can see he is doing a lot for me.

And I don’t feel like I’m doing much for him - or anyone else, for that matter. So many people have reached out to me while my body went through the transplant ordeal and your encouragement has meant so much. Now I need to adjust to more of the responsibility being on me (to exercise more in order to gain independence). But I feel like I am not doing a very good job with that responsibility, and I end up feeling more stuck than I really am. I kind of feel cut off from life (my routine has me home 24/7 except for appointments) but I haven’t even called the people who have offered to come over. And then I feel badly about that, too.( Perhaps this cycle sounds familiar to some of you…)

So here I am, only 62 days out, already feeling frustrated, impatient and ready for more strength. Though it’s barely been two months. My little knots are not insurmountable – we just need to apply problem solving and time. And describing my situation/venting is probably helpful. And everything is not totally negative: I need reminders of my progress so far; I have HOPE of more progress (I can lose sight of how big hope is); and we've had sunny days(!).

But I still remember when I would just handle my problems myself. Ah, independence.