Democrat and Independent Thinker..."The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself." -Nietzsche

Commenting on many things, including..."A government more dangerous to our liberty, than is the enemy it claims to protect us from." - Keith Olbermann

Thursday, May 10, 2007

Sorry, folks, but I am dealing with serious issues surrounding my illness and the devastating financial repercussions ensuing from this most rich of all nations inability to provide healthcare for it's citizens in need.

The only bright spot in my life right now is that my doctor is attempting to get me into a National Institute of Health clinical trial which will pay my transportation to Bethesda and resultant medical care.

So, since it is believed that I am suffering from one of the rarest diseases in the world, there is, at least, that.

Vote Democratic!

And don't lose me. I will return again. When, I cannot say.

8 comments:

whig said...

I have an incurable genetic disease, and I was provided transportation to NIH to participate in a study, which I wound up not qualifying for because my blood marker levels weren't what they were looking for.

One way I was able to obtain insurance with a pre-existing condition was to join a chamber of commerce. In Pennsylvania, that was the only way I could get covered. They provide insurance to their members, most of whom are employers, I had to have a corporation created just to get qualified. If I tried to buy a policy as an individual, they would not cover my pre-existing condition, and the HIPAA plans had maximums that would be blown in four years. (Yes, I'm expensive to treat.)

In California, I was able to get into Kaiser Permanente under HIPAA, and the coverage is quite good.

I don't know if any of this helps you find a way to get treatment, but I hope you will figure out a solution that won't permanently bankrupt you or refuse to help.

BlueKat said...

Thanks so much, Whig. Ahhh, California. The only civilized state in the Union. I lived in San Diego for about 4 years and rue the day I ever agreed to return to SC. I loved living there. Aside from being in a loveless, horrific marriage during that time, I was blissfully happy. It was so easy to live a healthy lifestyle, I was fit and microscopic, I was so tiny. I spent countless days at the beach and lived in a small, beautiful community where I could walk almost everywhere, even to the grocery store daily to get just what I needed. Just about everyone was from someplace else, so everyone was friendly and outgoing and open and it was easy to make friends and keep them. The work I did was fun and people, in general, had progressive mindsets so it was easy to get ahead even then. That was 20 years ago now, though, so it may be totally different for all I know, but it was a great time in my life.

Thanks for the tips. I'm trudging down the road towards Social Security benefits since my symptoms so interfere with my daily life that I cannot work a regular job.

My hopes for NIH are modest. Mostly, I'll just be glad to be tested and firmly diagnosed. There are no doctors known in the area I live who are knowledgeble enough to perform the highly specialized testing I need. My doctor has clinically diagnosed me with systemic mastocytosis, but I could have mast cell activation disorder or one of the other sub-categories of mast cell disease but until a bone marrow biopsy is done and certain other tests, there is no way to know without doubt. The doubt is nagging to say the least as I'm suffering from cognitive disorders like transposing letters and numbers, severe memory impairment, and other things and a brain tumor could account for some, but not all of my symptoms, perhaps.

May I ask how long it took from the time you were referred to when you went to NIH? And how did they go about providing transportation? I hope it wasn't a rickshaw or a cattle train.

Please stay in touch, Whig. You're a cool dude. :)

BlueKat said...

Oh, and I'm very sorry to hear about your condition and very glad to hear that you were able to get coverage. Duh. See what I mean? Ha.

bryan said...

This blog is really a cool one...

BlueKat said...

Gee golly, thanks, Bryan. I'm glad you like. I'll try to keep it going, only posting might get kinda sporatic while I deal.

Anonymous said...

Hang in therer oh powerful DKat
take care of your self and the rest of us will continue to fight the forces of evil!!!!

Tom
life long DEM

whig said...

My voyage to NIH (actually, there were two trips) was pretty nice, they provided coach tickets on an airplane, a hotel, and a shuttle from the hotel. Obviously when you have people that may not be in the best of health you have to provide accommodation. They were looking to test the effectiveness of a new formulation of recombinant enzyme and the quickest way to test was to go by blood levels of certain markers. In my case, the disease was more of bone than blood, but that is much slower (on the order of years) to respond to enzyme, so they didn't want me.

I ended up not having treatment for about ten years, and my hip was collapsed, so I was walking with a cane and it wasn't very good. I was told I needed a hip replacement but I should wait as long as I could manage the pain because the state of the technology was such that a replacement would only have an expected benefit for ten or so years anyhow, and then they'd have to do more replacements, until I would lose the hip altogether because there was not enough left to work with.

As it works out, I did get a hip replacement with a newer material (ceramic) which is expected not to wear out so quickly, if at all. But that's after ten years of agony, so while I'm glad for it, I don't lack understanding and compassion for suffering. I still have bone pain, it isn't as intolerable now, and I find cannabis very helpful to treat it. Of course, that's legal in California, too. Just not under federal law, which means theoretically I could be arrested and charged with a federal crime, but since I don't possess more than what I need for my personal use and they have steered clear of patient prosecutions for the most part.

Your condition sounds like you might need something to treat your skin externally. There is a recipe which might help, though I have not made it myself. Two parts myrrh, two parts cassia, one part cinnamon, and one part cannabis infused in olive oil. In the US it's very hard to find cinnamon, as cassia is labeled by our government as cinnamon, and cassia is cheaper. This would be a topical ointment, it's been a traditional recipe for a few thousand years.

BlueKat said...

Thanks Tom, and thank you for sharing, Whig.

It's hard to find the silver lining sometimes, but one aspect of suffering is how compassionate it makes us for others. While it is not a prerequisite for compassion, it is rare to find someone who is not compassionate or generous of spirit and empathy who has suffered much in their lives.

In other words, if a person has had a cushy life, it's easy to scorn those who have not.