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Thursday, November 03, 2011

Update on my Daughter...

Haven't written for a while about my daughter and her ongoing disease, CRPS (formerly called by its first acronym, RSD), so it's about time.  If you've read my older posts on this subject, you will remember that she was admitted at the beginning of August to a private hospital in Tel-Aviv called Re'ut (in English meaning "friendship"), a rehab hospital.  She received various therapies there, including physical and occupational, for her painful, non-functioning legs. These included mirror imaging therapies, Graded Motor Imagery and others.

At one point, when she heard that the hospital couldn't have her be an inpatient indefinitely, she told her physical therapist to give her crutches--that she would force herself to stand up and walk, through the pain.  Her therapist said she was totally not ready for crutches, but she found her a special walker (I wrote about this in a previous post) which would support 85-90% of her body weight, and my daughter used it to lean on and shuffle her legs forward, very slowly, a few steps.  That was the first time in almost 8 months that she was actually vertical.

Despite her giving "110%," as everyone on staff (and my daughter herself) said she was doing, she could not functionally walk, but rather was just practicing the few steps she was able to do day after day.  After over two months hospitalized, they had to release her, as they felt they could not do anything more for her on an inpatient basis. 

This past Sunday she moved into a handicapped accessible apartment (which was extremely difficult to find--see Batya's post on Israel's progress in this area), after buying an extremely expensive, hopefully-to-be-compensated-for-in-the-future sports wheelchair, in order to wheel herself the 1.8 kilometers from the apartment to the hospital for her therapies on an outpatient basis. 

Although hers may not look exactly like the one above, I had no idea sports wheelchairs were so expensive.  For now, she is in the apartment, living with the family who owns it--they are so good-hearted and sympathetic to her situation, that they invited her to stay with them until they find two more tenants (for a total of three including my daughter) to share the place, which is a nice-sized three bedroom, three bath flat (and consequently she can't afford it by herself) with a large mirpeset (balcony) off the master bedroom which they want her to have when they leave. 

And as if this wasn't enough, in addition to dealing with her debilitating disease, the expenses involved in medications and treatments and the logistics of living on her own through it all--both her American and Israeli passports were stolen, the Israeli one from her brother's apt. when he was broken into several months ago, and her American one from someone--a patient, a visitor, no clue who--in the hospital itself, just a few weeks ago.  The situation is so upsetting, it's taken me this long to put it down on paper.  It's exhausting--and I'm not the one with the disease (kal va-chomer...).

This concludes my update on Rambo's condition. She is fighting the fight of her life, to get her life back.

So for now, sit yourself down with a nice cup of coffee and a danish (or a carrot if you're on a diet), and take an hour to listen to this interesting and fairly complete history of RSD/CRPS. Although a bit medically technical, it gives a good overview of the discovery of and history of treatments for this difficult disease, for which there still is no definitive cure.



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2 comments:

Batya said...

Of course I care about your blog. Hah! Yes, I even read the comment instructions. Now I just must remember what post I'm replying to.

Shabbat Shalom

Batya said...

OK, yes, thanks for the link. The new apt sounds great. I don't have time to listen to the entire lecture. It is Friday.

The thefts of the passports are salt on the wound for sure. I trust she has reported them. Kapparah!

Refuah shleimah and Shabbat Shalom

 
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