On Friday my new drug, revatio, was delivered. I got two doses in that day and have been taking three doses a day since then. It's hard to judge if it is working any better because it's been so very hot here. Today it's supposed to reach 94. When I go outside it's difficult to walk at all. Easier WITH the portable oxygen tank, yes but still not easy. I have been in a funk lately and over the weekend Rob took me to Joe's Crab Shack to cheer me up. The crab legs were delish but I have never had a whole lobster before and when I saw it's eyes I coudn't eat it. I brought it home and my neighbor enjoyed it. I had enough to eat with the 4 shrimp, two crab legs (from a Queen crab) two boiled potatoes and an ear of corn. It was my belated birthday meal I hadn't had.
I have been so busy trying to get requalified to my long term disability for another six months. My SSDI payment is very low and this subsidizes it. Even with it, I only get 50% of what I made working. Without it I get less than 20% of what I made working. As prices steadily increase for EVERYTHING it's so difficult to get by on less. I had recieved some insurance money from my father's passing which was a tremendous help last year. That was a one time thing though. I don't mean to keep bringing up money but when I just saw my last bill for my U Penn visit it was really high. MY cost was over $400.00 for the ONE visit. Insurance paid about six thousand.
Today is Tuesday and that means our PH Chat in the afternoon which I really enjoy. I look forward to Tuesday afternoons, especially when it's too hot to be doing much of anyhing else. Stay cool.
I'm sorry I haven't done afternoon chat in a few weeks (at least it feels that way!!)! I'm glad to be chatting with you now, though!! lol It makes me happy to know that chat helps people like you! :)
ReplyDeleteHi, my name is Elisa and I was just diagnosed with PAH and by reading your blog I can relate to what you are going through. I also started a blog to deal with my illnesses, I also have Lupus. I hope you had a great day, and if its possible can you give me more info about the chats you mentioned in your post.
ReplyDeleteElisa,
ReplyDeleteWelcome to my blog. One of the best resources a patient with PAH can have is http://www.phassociation.org/. I registered there and you can enter the chat rooms for support at that site. I usually chat Tuesday afternoon 1-4 as that is most convenient for me, but there are many evening chats also. The friends there are a great resource of information and support. I find in the beginning that is what you need the most. Good luck to you and I will try to find your blog.
Nelle
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