Oh, the joy of Spinraza!

[stonebender]

I haven't said much about my Spinraza treatments recently. Mostly because there isn't much to tell. Last Monday I was supposed to get my sixth spinal injection. We got to the appointment way early, so we had to wait. I don't really want to get into the blow-by-blow's, but I couldn't stay on the table long enough for the doctor to get the needle where it needed to be in my spine. So, I got rescheduled for this coming Monday. This means I need to get blood drawn again. Which means a trip to Emeryville where Stanford has a clinic. Before my failed injection it took them three tries to get blood out of me. I hope this time is different. I just hate needles.

I have been trying not to get too down on myself. I always feel a bit like a wimp when I have to give up laying on the table before they accomplish their task. They seem to always be up for trying again. That leaves me as the one who has to put a stop to the process. I try to hang in, but sometimes it's so long and gets so painful. Giving up also means that I have to go through the whole rigmarole again fairly soon. Which is why I'm headed to Stanford this Monday.

Oh I've been given the opportunity to get some physical therapy. They don't let me have too many appointments, but now I have some exercises to do, it helps me feel like I'm working on things rather than just waiting for things to happen. A few of my exercises I can do on my own, but most I need an assistant to help me complete them. Things like clenching my fists. I can move my fingers a little, but to complete an actual fist I need some assistance. The therapist also has me doing a kind of growing motion to work on my arms. The whole routine only takes about a half-hour. I'm always boggled at how tired I get. I do seem to be getting stronger. It's still not particularly useful, except that my breathing is stronger.

I am not looking forward to going to Stanford this Monday. I really hope it goes well.

Comments

[redbird]

Sure, they're always up for trying again: they're not the ones it hurts. In all seriousness, their patience is valuable, but they do have the easier part.

[stonebender]

True. I must say though that the staff at Stanford have been so very supportive and helpful and kind. I've had way too many awful experiences in hospital settings. This is not an easy procedure for me, but all the people working there have done everything they can to make it as easy as it is possible to be.

[serene]

I figure if your lungs are getting stronger, then so is your heart, and that's good news to me, because I get my sweetie for longer. ♥

[stonebender]

Thank you sweetness. As you know, I am strong, like bull. :-)

[johnpalmer]

Here's hoping.

I have PT on some muscles that aren't used to working - it's exhausting for me. So it might be relatively normal to have that sort of work tire you out (keeping in mind I'm not a doctor).

[stonebender]

I think you're probably right. It is however something that feels alien to me. Because of my disability most of my physical therapy has been geared to maintaining function, not getting stronger. Improvement, is slow, but happening. I'm feeling good about all of it. I just feel better when I can tell people the frustrating, scary bits. Saying it just seems to help.

[tiger_spot]

Hey, stronger breathing sounds pretty useful. I'm sorry the treatments are so hard.

[stonebender]

Thanks, I'll take stronger breathing any day even with all the difficulties.