Saturday, April 28, 2007


I received a wonderful birthday present on April 20th. A letter from The Hartford informing me that as of the 17th, my meager benefits were terminated. I no longer have any income whatsoever.

The decision was fraught with errors, from what my job title had been to my diagnosis. They had mastoiditis, which is an inner ear infection. My doctor assures me that she has it clearly stated in her notes that I have systemic mastocytosis and am permanently disabled from any type of work.

Knowing not what to do, I contacted an attorney. They got me in right away, and we will be appealing the decision (which could take about 3 months) which will, in all likelihood, be denied. Then they will file suit. Which could take a year to be settled. A year!

I was shocked to find out how heavily the so-called justice system in this country is weighed now in favor of the insurance companies. You would be, too.

Meantime, I am too sick to work almost every single day of my life, so I cannot apply for unemployment insurance. All I can do is apply for Social Security disability, which I should have long ago. I have just been so sick most of the time that I just couldn't deal with it, but I have had days when I could have so I have no excuse. However, The Hartford had been pushing me to use an attorney they referred me to and I just did not feel right about it. It seemed like the wrong thing to do. They are a firm located in the same state as the insurance company, not my state. I was relieved, at least, to hear from several firms I had contacted, including the one I finally settled on, that that would have been the totally wrong thing to do.

Now, I have to file directly with SS myself and it will probably be denied at which time my attorney will step in. They also want to talk to me about the allergic reactions I had to the medications which sent me on this path to illness. I have an appointment Monday with that set of attorneys.

I'm trying to find out about medicaid, welfare, food stamps, food banks, whatever.

I expect to lose my house. Or have to file bankruptcy. Or both.

I am distraught beyond words.

I will lose my internet connection when the bill next becomes due. Afterwards, I will post only when I can from my mothers or sisters computer, I suppose.

I have found the clinical trial being conducted at U of Michigan by Dr. Cem Akins which is still recruiting patients for diagnosis and testing for mastocytosis and have emailed requesting information. My TMS support group leader is also working to find out information for me in regard to testing.

Has any of my readers ever participated in such a program? Will they pay transportation costs? If so, perhaps I can get a definite diagnosis. If not, who knows?

If you don't hear from me again, ever or in a long time, I hope this blog has been helpful to you and that you have found some information that was useful.


Anonymous said...


I came across your blog.

First off, I have masto as well. I ran into a terrible insurance company fight too. I was actually an employee AT the University of Michigan, and their M-Care insurance refused to cover me. They misdiagnosed me too. They thought I had "hyper sweating". I went out to Mayo Clinic, where I got diagnosed, only to discover that Dr. Akin was at Michigan all along!

Don't give up the fight. There is HOPE. I appealed the insurance company and WON. I documented everything. You need letters from doctors stating the nature of your condition and how it MUST be treated and monitored, stress that it is a matter of medical necessity!

Second, Dr. Akin is the best! He answers your questions, and emails you if you are concerned and everyting. I got all straighted out and now I am doing pretty well. I take calcium, vitamins, some cromyln and Clarinex, and I do pretty darn good. I can exercise now a little, and even do figure skating.

So, my message to you is DON'T GIVE UP! You just need to get on the right program for you and stay hopeful. There is a lot that can be done to help you.

BlueKat said...

Thank you so very much for your encouragement. It helps alot.

Dr. Akin did reply 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.

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 she put me in touch wih Dr. Robyn who is over a similar study for the NIH, and they do cover transportation and all testing and medication costs. 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 guess I should post some of this to the blog itself.

Take care and I really do appreciate the encouragement, from my heart.