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Friday, April 25, 2008

Nutty Neighbor, Clinic Visit, Medicad is Bleeding Me

ferncohen.com
It's been an interesting week for sure!
First of all, please show your support by clicking on my newest articles. On Associated Content, I wrote about finding your "googleganger", which is someone with the same name as you. You can also read about the day I met my googleganger at college, and the maddening result. Use this link
and you can read my metblog posting about a new African restaurant in the Meatpacking District. It's not a review because I will never get to go there and try it out, but maybe someone can, and report back to me. Check out this link.

Saturday night, I went to an extended-family seder given by the family of a friend and her husband [he has ALS]. It was nice; we took Access-a-Ride, and Ellita liked gefilte fish -- go figure! And because we had to leave before the main course, Sue sent us home with three containers of food. True to Access-a-Ride, we had to be outside at the scheduled pick-up time, but waited for forty minutes outside when we preferred to be inside eating. But, if you are not out in front when they arrive, they leave. I have frozen in sub-freezing cold, gotten soaked in pouring rain, and sweated in sweltering heat waiting for transportation.

Monday was my quarterly visit at the ALS clinic. I will be starting the low-dose lithium as soon as my pharmacy gets it in. I have to have weekly blood tests for a while, then bi-weekly, then monthly. My biggest challenge will be taking in the extra liter of water daily. I will either have to thicken it, or put it through the PEG. And then there is the peeing.....ok TMI....

Monday night I saw the urologist for my persistent UTI. I have to have two sonograms -- pelvic and stomach. For the stomach, I can't eat for 6 hours before, which I can do. But, for the pelvic, I have to drink [or put through my PEG tube] 10 cups of water, and then hold it until the test is over. I've done this before, and it's not fun!! I hope I can do this!!!! I'm not in my 20s anymore......

According to Dr. Scelsa, my muscle function is stable from my last visit, which is great news! My next visit is July 14 [Bastille Day]. It's hard to believe how this year is flying by!! I am starting this week on the experimental low dose of lithium that was studied in Italy. I will have to get my blood tested every week for a while to make sure it is not damaging my liver and kidneys. On top of that, the urologist says i have to go for two sonograms -- a stomach and a pelvic. For the pelvic, I have to drink, or put in my tube, 10 cups of water, and hold it until the sonogram is over. I don't know how I am going to manage this.

And there is another thing I don't know how I am going to manage. Out of the $745 that I am allowed to keep every month, which is used up by old debt payments at the highest possible rates, I now have to pay $109 every month to the home care agency to keep my home care. I don't know where they expect me to get this money. My hair is already a multicolored overgrown mess, because I have not had the money to get it cut and colored. I have nothing but Old Navy tee shirts that fit me, because I can't buy anything new. I guess it's a good thing I lost friends, because I wouldn't be able to afford to go anywhere with them anyway. I just don't know what else I can possibly give up!

Anyway, I finally got some sleep last night, after several nights of having to call the police on my upstairs neighbor who was blastng her TV so loud all day and night, that my apartment shook! My super finally talked with her daughter, who is going to take Mom for a hearing aid next week, thank God! So if everybody could just click on my Associated Content articles, it would help me! And if you know any crafters, tell them to go on eBay to bid on my rubber stamps and other craft supplies I am selling off! My seller ID is fec139. I have the first chapter of my book done. If I could only have a quiet place to work without the TV going [aides have to be occupied], I would be fine. I am thinking of having the aide drop me off at the library sometimes with my laptop [they have wi-fi], just so I can have a few hours of concentration!
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