Mixed emotions

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Posted by Carl D ( on April 24, 2000 at 16:53:03:

Well, I stayed over at my brothers house in Granite for a couple of days. It was kind of therapeutic in a way. I don't see my family too often, so it was cool. It is also the first time I have seen my two month old nephew since the day he was born.
Of course you guys know how depressed I've been for the last couple of months(years), but I brightened up over the weekend. Holding Elijah and looking into his innocent, unknowing eyes made me feel as though nothing bad has ever happened. I can't quite explain this, and some of you may think/know I'm a little crazy, but it was almost like he looked into my eyes, smiled and giggled, and did his baby talk - and it spoke volumes to me!!! He can't even speak words and yet, said more to me than anyone has in months.

When my brother dropped me off last night, I was shadowing pretty hard and started thinking about Elijah, wondering what the possibilities are for him or his older sister eventually developing Clusters. Neither of my brothers have them, but I still wonder.

Well, now I am back home again and, Can't even tell you why but - am depressed all over again. I am not even sure I could put into words what I am feelling right now. I know I am disappointed with how things are, and well, I guess I'm just still bummed about expecting to be on rung 12 of the ladder of life and instead, I've slid down to the bottom and am back to rung 2. I won't go into it - I'll just bum someone else out.

I have been blessed the last two nights though. While I was at my brothers house, I did not sleep the night before I went over there, and did not sleep a wink Friday night. I did manage to get about five hours sleep Saturday night and, last night when I got home - I took more pain medicine to wipe out the shadowing, laid down and slept almost 7 hours!!! This is very unusual for me. I am actually starting to get sleep again. I really do hope this is the beginning of a wonderful new trend, as my body is still rebelling against me physically for all of the sleep deprivation I have gone through for the last year or so. For that, I count myself blessed.

I told my brother that when I can get my own system I am going to start learning web design and also want to learn more about 'puters themselves. He is currently going to school for programming and, when I get a system, is going to let me borrow his 'Visual Basic' books and try to help me with it. If I can learn computer in's and out's, then I can start doing jobs from home - when I finally get myself straightened out.

As far as the SSI goes, I spoke to my attorney's office last Thursday and they let me know that a decision has been made and I will receive the notification by mail within the next week or two. Until the, I am keeping my fingers, toes and eyes crossed. If the judge found for me - I can begin rebuilding my life, will be eligible for a medical card, and should be able to get my Dr.s appointments and meds covered. That would be a blessing and a half. If I am rejected - on with the appeals.

If my SSI does go through and I am able to get myself covered for meds and such, I have spoken to Elaine and, if I am covered and there is still money left over in the medical fund you guys started for me, then we will take those funds and find someone else who is in need of assistance for meds and doctors. If I am able, I will even kick in some funds to help whoever needs it. I just pray that everything goes through and I can begin rebuilding the years that the Clusters have eaten.

I am going to my GP Friday, and will be getting a referral for a new Neuro. I am not sure who I will be going to next, but am searching for a good doc in the meantime.

Again, thanks to anybody who donated to the medical fund. It helped me get my meds again last week and is allowing me to see my GP on Friday. Maybe we can eventually set up a medical fund through O.U.C.H. where anyone can donate any time to the fund and if another clusterhead cannot afford thier meds, Doc, o2 - whatever - they can apply for assistance from O.U.C.H. and be able to get the help they need. Without Elaine taking the initiative and starting all of this - I would still be hurting with nowhere to turn. Now, I am hurting less and have someone I can turn to when in need. If all goes well, within a couple of months, I hope I can do the same for someone else.

Carl D

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