Reality Check!

ferncohen.com
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.