It is amazing what you can get used to if you really have to. Today is my third day in a row getting spomge-bathed. Not too bad, and I am just as clean. But what to do about the hair. I am going to have to go to a local salon and get a shampoo and blow-dry. I am supposed to go to the kickoff party for the Long Island Walk to D’Feet ALS on Wednesday night, so I want to look halfway-decent for that.
I was able to get into the bathroom this morning but I couldn’t make the turn to get into the shower. It involves a pivot-turn on my right foot while holding on to the sink, and then swinging my lleft foot around. If the right foot starts to turn before I get the left foot around, it’s all over. Then the ankle turns and I am standing on a twisted foot, and starts to swell up, I get fatigued and out of breath, and it only gets progressively worse. I tried three times and then I gave up. I didn’t want to get so fatigued that I wouldn’t have the strength to get out of the bathroom or, worse yet, fall and break a bone(s).
I am trying to get my gastroenterologist on the phone to make an appointment this week.
And I am also trying to find out from Home Medical Equipment if my bed can be fixed, or if Medicare bought it, in which case I will have to pay for repair. After 2 years Medicare purchases equipment so then the repairs become the patient’s responsibility.
I slept in the recliner last night and woke up with no backache, which I can’t say for my nights in the hospital bed. Maybe I should just sleep in the recliner from now on—that hospital bed has never been comfortable!
Warren stopped by last night to pick up my I-Mac manual because he is going to put my old desktop on eBay. Saturday, Ellita and I met Jody at PS1(Museum of Contemporary Art). I could actually live in Long Island City—great neighborhood resurgence and magnificent views of Manhattan. I may just take a field trip over there and look around. I could hang out at Gantry Park on the water and shop at Costco……worth a look.
My mercury problem is still looming, and my rep is on vacation. Thank goodness for ALSA and the loan closet!!!!! I also told the attorney that I would feel more comfortable sitting with him and going over the contracts before I sign. They amended the erroneous selling price of the original, and now give me 5 days after closing to vacate, after I questioned the original stipulation, where I had to move out before closing, which was crazy!
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Tuesday, July 10, 2007
bathing woes with ALS
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