To my internet connection, at least for now. Trying to get to a point where I can sell some of my stuff on ebay. I have lots of stuff. Way too much stuff.
Still waiting to hear back from NIH. My doc mailed the referral letter almost two weeks ago, so not time to start worrying yet. Waiting on Social Security. Waiting on long term disability. Waiting, waiting, and running out of money fast. Running out of time to catch up on my mortgage payments.
Waiting and running out of time and money.
I have the rashes and itching to keep me occupied. It's gone into overdrive. And I dare not use the corticosteroid to tamp it down since I know the doctors will want to see them in their full and festering glory.
I'm trying to keep a good perspective and not devolve into a depressed, overwrought heap but I'm out of all of my anti-depressants except for the affordable doxepin. I have an appointment with a free clinic on the 31st and they will provide meds, so I'm hangin' on until then.
Thursday, May 24, 2007
Friday, May 04, 2007
Dr. Akin and U of Michigan
Dr. Akin did reply promptly and was very helpful. U of Mich does bill your insurance for the tests and does not pay transportation costs but he says there are organizations to help with such costs which TMS has info about. He suggested I contact them for info about an NIH study.
Not having insurance, U of Mich was not a good match for me. I contacted Valerie Slee who is over Research at TMS (The Mastocytosis Society) and right away she put me in touch with Dr. Robyn who is over a similar study for the NIH, and they do cover transportation and all testing and medication costs. Thank you Val and TMS and Dr. Akin!
Hallelujah!
My doctor is sending them a referral letter with my records for review in determination for my qualification for the study.
Keep your fingers crossed for me.
Meantime, I am still scrambling trying to find assistance resources while I try to get approved for Social Security. Got foodstamps, but do not qualify for Medicaid until approved as disabled by Social Security.
I was referred to Communi-Care which helps with medical expenses, but it is for the working uninsured. I'll try them and see what might happen.
Apparently, today in America, if you are too sick to work and can't afford your medication, until you can get approved for Social Security which can be time-consuming and very difficult, you may as well lay down by the side of the road and die.
Sorry for the pessimism. I'm trying really hard to not be that way. The stress of all this is making me terribly sick, not to mention having weather that is 80+ degrees one day and 55 degrees the next while I'm trying to run from DSS to SSA to doctors offices, etc. and both heat and cold are triggers. Plus, I can't even describe how difficult it is to fill out all this paperwork and talk to all these people when my brain is so foggy that I barely know my own name.
For example, I went to a free clinic to apply on 5/2/07. My DOB is 4/20/57. I signed in and was supposed to put my DOB. I wrote 4/22/07 because DOB had registered with me as today's date. AS IF 4/22/07 WAS 5/2/07! When this happens, usually I know I've done something wrong, but I have to stare at it for long seconds before it registers. Finally, I realized I was supposed to put my DOB. I wrote 4/20/07, thinking I had corrected it. Duh, no. Not unless I was 12 days old. I was too embarassed to change it again.
Then to the paper work. First up, sign and date form. I wrote 4/22/07 AGAIN!!
These are not the actions of a coherent individual. But typical of me these days, increasingly more so. My family is becoming adept at translating me.
If I'm trying to mention an individual, say Tom Hopkins, I'll more often than not have to say "his name is something like Bob Haskitt" and they have to guess until they figure out who I'm talking about.
If I'm driving to K-Mart, I'll end up in the Target parking lot wondering why the hell I'm there. I'll pull into a fast food place and drive right by the speaker and directly up to the window.
All of which is scaring the hell out of me. I'm afraid that if I don't have masto, then I might have brain tumor. If a brain tumor might also cause chronic itching, rashes, diarrhea, stomach aches, gastritis, rhinitis, sinusitis, bone pain, body aches and major fatigue.
But, I have no insurance and no money. If I cannot get into the NIH soon, I'll have no choice but to have to go to the hospital emergency room as an indigent patient, I guess.
Please pray for me.
Not having insurance, U of Mich was not a good match for me. I contacted Valerie Slee who is over Research at TMS (The Mastocytosis Society) and right away she put me in touch with Dr. Robyn who is over a similar study for the NIH, and they do cover transportation and all testing and medication costs. Thank you Val and TMS and Dr. Akin!
Hallelujah!
My doctor is sending them a referral letter with my records for review in determination for my qualification for the study.
Keep your fingers crossed for me.
Meantime, I am still scrambling trying to find assistance resources while I try to get approved for Social Security. Got foodstamps, but do not qualify for Medicaid until approved as disabled by Social Security.
I was referred to Communi-Care which helps with medical expenses, but it is for the working uninsured. I'll try them and see what might happen.
Apparently, today in America, if you are too sick to work and can't afford your medication, until you can get approved for Social Security which can be time-consuming and very difficult, you may as well lay down by the side of the road and die.
Sorry for the pessimism. I'm trying really hard to not be that way. The stress of all this is making me terribly sick, not to mention having weather that is 80+ degrees one day and 55 degrees the next while I'm trying to run from DSS to SSA to doctors offices, etc. and both heat and cold are triggers. Plus, I can't even describe how difficult it is to fill out all this paperwork and talk to all these people when my brain is so foggy that I barely know my own name.
For example, I went to a free clinic to apply on 5/2/07. My DOB is 4/20/57. I signed in and was supposed to put my DOB. I wrote 4/22/07 because DOB had registered with me as today's date. AS IF 4/22/07 WAS 5/2/07! When this happens, usually I know I've done something wrong, but I have to stare at it for long seconds before it registers. Finally, I realized I was supposed to put my DOB. I wrote 4/20/07, thinking I had corrected it. Duh, no. Not unless I was 12 days old. I was too embarassed to change it again.
Then to the paper work. First up, sign and date form. I wrote 4/22/07 AGAIN!!
These are not the actions of a coherent individual. But typical of me these days, increasingly more so. My family is becoming adept at translating me.
If I'm trying to mention an individual, say Tom Hopkins, I'll more often than not have to say "his name is something like Bob Haskitt" and they have to guess until they figure out who I'm talking about.
If I'm driving to K-Mart, I'll end up in the Target parking lot wondering why the hell I'm there. I'll pull into a fast food place and drive right by the speaker and directly up to the window.
All of which is scaring the hell out of me. I'm afraid that if I don't have masto, then I might have brain tumor. If a brain tumor might also cause chronic itching, rashes, diarrhea, stomach aches, gastritis, rhinitis, sinusitis, bone pain, body aches and major fatigue.
But, I have no insurance and no money. If I cannot get into the NIH soon, I'll have no choice but to have to go to the hospital emergency room as an indigent patient, I guess.
Please pray for me.
Subscribe to:
Posts (Atom)
