RE: Team Sarcoidosis Walk

[Guest guest]

Judy, that is such wonderful news! Just don't push yourself too hard on the walk; if you need a scooter, wheelchair, whatever, it's okay. I'm going to take my portable stool along, so I can sit & elevate my feet when I need to. I'll probably also take an extra half dose of Lyrica the night before! Don't worry, I'm not taking more than I should. I was originally taking 150mg twice a day, but the morning dose was making me too sleepy all day, & taking it all at night still knocked me out the next day. So I just take the 150 at night & occasionally add 75mg when my feet are hurting too much to sleep.

I am so anxious to meet you at the Indy conf. Take care of yourself.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Team Sarcoidosis WalkDate: Fri, 31 Aug 2007 21:56:38 -0000

I am utterly astonished two friends each donated $50.00 each for me to walk my mile.And one of the servers at a restaurant we go to wants to walk with me. This is blowing me away, these people are not rich.You know how this darn disease effects your sense of self worth and all the other stuff. I am in training for this walk because I will do it if I have to crawl, no I can't do that cuz I would not be able to get up from the crawling position.When you meet me you will understand the signifigance of my wanting to do this walk.Rhe longest I have walked in 5 years was from the front door of our supermarket to the meat counter at the back of the store, and I only did that one time.I am so excited by the response to my walk donation invitation.I am so pumosaed up for this. I have so many good things in the near future. Seeing Dr.Baughman, and the Indy Conference. The only thing that is not nice is going to small claims court because of some problems with my fall on the bus steps.It's a long story but the president and vice president told me I would not be allowed on the bus because of my falling while trying to board the bus after I had hurt my Right shoulder when my scooter tipped over the night before. When it tipped I hit my right shoulder on the curb.Our bus had high twelve inch steps, They were difficult for me but I could make it up them until my shoulder started to freeze and I couldn't grab onto the rail on the dashboard on the bus when I was trying to get back on it at 9PM. The officials of the senior center came to our room the next morning and told bob and I that we would not be allowed to ride the bus for the rest of the trip because I was to much of risk (supposedly this was told to them by the bus driver when he reported what had happened on his bus). After we got back we went to the senior center to ask when we would receive the money they said would be refunded to us. This began a series of lies on their part, they now deny every saying anything like this to us.No one asked if we had money or a credit card, we were just abandoned in a hotel 5 hours from our home. I am not worried about the outcome, we know what they said and so do they, the rest is in the hands of the MAN upstairs. If they want to lie under oath that's their problem.Any way, on to a happier note. did I tell you my bone marrow is beginning to produce red blood cells, No IV's for the last two weeks and I don't have to go back until October to be rechecked. I can tell if it is going down by the palpitations and the consistancy of my blood when I check my blood sugar.Hope everyone will have a nice weekend. I look forward to reading the digest each morning. I sure wish we lived closer to each other.Judy in PA

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