Reality check!!!! The estimates for this remodeling are coming in at about $6500.00, which is a good $5500 more than I have put aside. One look at my finances revealed that I can’t spend any more money that I don’t have; my monthly charges are higher than they should be already. I have to explore ways to raise funds, and this is all stressing me out, as if ALS wasm’t stress enough. I’ve cancelled Netflix and I just cancelled my audible.com membership. I am trying to figure out what other corners I can cut. I am going to resign from NYC Metblogging this morning, because it is getting harder and harder to write about the city when I can hardly get out anymore. And if I am feeling overwhelmed, I fully empathize with the people out there who have jobs, children, etc. I am totally understanding why people just can’t come around anymore.
My eBay stuff isn’t selling as well as I thought it would. My energy level is going down, down, down. And two of my aides in particular are burning out; and even if they admitted they’ve had enough and want to leave, it would be too difficult to orientate a new person or two. It is I who have to do the training, since there is nobody who is here often enough to know the daily routine. And that is exhausting for me, especially since I can’t speak. Everybody is sick of emptying the portable commode and giving sponge baths. And I still have not found a good way to wash my hair. The dry shampoos and “no rinse” shampoo caps make my hair look like straw. And the local salons want from $30-$40 for a shampoo and blow-dry (nobody just does a shampoo). Inquiries at several local salons showed me that the $32 I paid for the shampoo/blow-dry last month was in the ballpark.
So I don’t see life getting better for a while, if at all. And by “better life”, I mean the luxury of a shower and shampoo!! As much as the aides wash me down well, I never feel really clean. I have been researching government grants, but have come up with nothing. I thought I had something last week through United Cerebral Palsy, but found out it doesn’t apply to Queens. I feel so drained and hopeless.
I went to Haley’s house for Thanksgiving. It was so good to see the family again. But I found myself very emotional when it was time to leave. I could not bring my bi-pap because it was too much for Ellita to carry with maneuvering the manual wheelchair. My dad is still struggling with colitis and the bladder cancer. I should be helping HIM out. I should be doing “aunt” things with the kids. I should not be the one who has to be cared for. I think that was the reason for the tears.
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.
Friday, November 23, 2007
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I'm so sorry you have all this problems and this huge burden weighting on you. In case it might be of any help or at least hope to you regarding your disease, there are some very positive indications on the use of lithium in an Italian study with ALS patients. Please read the forum on the ALS TDI webpage regarding this issue.
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