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!


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.


ben said...

I came across your blog from DebtCC Blog Hunt and found it very informative on insurance related topics.Health insurance is a must do thing.

BlueKat said...

Thanks Ben. You've got a great site and so is DebtCC. I'm bookmarking as I'm sure I'll need all the help and advice I can get in the future.

Piia said...


What a terrible situation u have in there! Lot's of hugs and strenght to u!

I came here via google, I've had Up for my whole life and now they are suspecting systemin mactocytosis. My tryptase level was 98 and in ultrasound was founs slightly enlarged spleen. I never had such symptoms as u, lucky me, but recently ive had reactions from alcohol, vomiting and diarrea (without a hangover ;D). Cheese has never suited me.

This all is very new to me, because alla my life ive been thinking these marks on my skin are just a part of my identity, not a sickness. It's really confusing. Im goin to hospital visit at the end of the month and probably they will do a bone marrow test. Luckily i live in Finland, where health care is mainly payed from tax money, so this visit to a poliklinic will pay me only 22euros. I am very deeply sorry for your situation with insurances, but at the same time, it makes me really appreciate our own system here in finland! (if u dont know nothing about finland, we are not like rushians, ehat is common thought ;D) nothing bad to russians but...

What i wanted to ask from u, is that can it be like this, that 32 years you dont suffer from anything anf then the shit starts??? I really hope not. U seem to know so much, and i know so little.

Take care, i will return. Piia

BlueKat said...

Hi piia... sorry to take so long to reply. I'm sorry to say that I am not an expert, but it sounds to me like you have probably had masto all along and not known it. I've heard from quite a few people who say they go for long periods of time with little to no symptoms being displayed, or have very mild symptoms.

Let us know how the visit to the doctor goes. I do envy you lucky people who live in progressive countries like Finland or other countries who have national health care. Perhaps we will get there one day in the U.S. I have to hope so.

Good luck, dear, and I'm sure you'll do well once you are under the proper treatment regimen.

Melanie W, Michigan said...

Hello. I am a Mastocytosis patient in MI. I started developing skin (cutaneous)symptoms at age 7 and internal (systemic) symptoms in my mid to late 20's. I am now 34 years of age. Dr. Akin is one of my many physicians treating my disease. I am also a member of The Mastocytosis Society ( The Society has many local support groups and is a great resource! I wish you the best! Melanie ( - please list "Mastocytosis" in subject line so I do not deem the e-mail as "junk" ;-)