Antoinette submitted her three designs for the apartment renovation. I am so glad she came, because I would never have known that the floor in the bathroom is slightly higher than the floor in the kitchen, so the flooring needs to be done. That means a contractor, and it also means board approval. I am going to have to get estimates. The guy who did my previous renovation – taking out the tub and putting in a stall shower—will be one of the ones I call. But it’s hard to know who else is honest. I have to ask around. I will have to send Chelsea to board, because she can’t be here with all the banging. And, depending on whether my bathroom will be out of service, I may have to go somewhere too; or at least I have to arrange for my aides to be able to use another bathroom. So I don’t know what I will do. Knocking down walls will create a lot of dust, but I may have to deal with that.
Money is another hurdle. I think a home-equity line of credit will be the way to go, and at the same time, I can consolidate some of the old debt that has been looming over my head, and making it tough to hold onto the $720.00 a month that Medicaid allows me to keep every month.. So this might end up to be a good turn of events in more ways than one.
A last trip into the shower on Thursday was a disaster. It made Lynette late for her day job, since she didn’t want to leave Ellita alone to get me out of the bathroom. So, I really can’t go in there anymore. Sponge-bathing is permanent, until I get the bathroom modified. Since hair-cleaning is an issue I had to order a dry shampoo online. Not the way I wanted to live, but I have no choice. I have had no desire to do much, and I think I am just very depressed. Just a few months ago, I was full of hope to improve my situation, and now reality comes to slap me in the face. I am extremely self-conscious about not being able to take a proper shower and shampoo my hair. When I have to sit on the portable commode in the middle of my living room, it depresses me. And now I am again at the mercy of six people who can hold up, and even stop, any renovation. I don’t know how in God’s name I am going to deal with contractors when I can’t speak, and I am scared as hell that they will take me for a ride because I am disabled and defenseless.
Anyway, it was in this spirit that I had to attend the Walk to D’Feet ALS last Sunday. But I had a good team, which consisted of Ellita, Lynette, Debby and Andrew Wolfe, Cassie the dog, Louise, Haley, Claude, Tyler, Rianna and her friend Darie, Jenna, Gino and Donna and their daughter Regina, Michelle and her friend, Michael, Flo, Judy, and Jane. The weather could not have been more perfect, since we are having a weird September and October; as I write this on October 7, it is 79 degrees at 5:37pm! So it was a great afternoon at the park. After we all got back to Queens, Debby, Andrew, Jane, Ellita, Lynette, and I regrouped at the local App;eby’s for dinner; an appropriate choice, since they were a sponsor at the Walk, and provided the hotdogs afterwards.
Monday was my appointment at the ALS clinic at Beth Israel. Dr. Scelsa said I am an unusual case because I progressed rather quickly at the beginning and I am settling into a plateau. He see no change in strength since my last visit in June. So that is good news. The PT suggested that I get an athletic ankle support at a sporting goods store, to stabilize my ankle during transfers. I f that doesn’t do the trick, I can try leg braces. Other than that, the visit was uneventful. I.ater, Louise redeemed her auction prize from Wings Over Wall Street. It was for fish and chips at “A Salt and Battery” and then high tea at “Tea and Sympathy”, both down in the West Village, my old stomping ground (from when I did my masters degree at NYU, studied acting at HB Studios, and then took craft classes at The Ink Pad). So, aside from great food, it was a nostalgic trip down memory lane for me.
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.
Monday, October 8, 2007
Walk to D'Feet and Apartment Renovation
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