Well, I finally got it. A “Notice of Action for Denied Services”. It says a consensus of my doctors has deemed that IVIg is not medically necessary. What a load of crap. All my doctors, with the exception of the first idiot neurologist that I saw in Utah, want me on IVIg. The neuro opthalmologist who prescribed it has fought hard for me. Of course the letter is dated July 21 and I got it on the 29th. Took a long time to go 4 miles, huh? It says I must appeal within 30 calendar days from the 21st. This came from my insurance company’s Utilization Management Medical Director.
Now the question is…fight or flee this state? I have to go to a website and print out an appeal form. Sure, my cellphone does that! Sigh…
I haven’t done much in days. Mostly I sit in my apartment, struggling to breathe. As each awful thing has happened to me in Utah, it just gets to be part of my background. Being sicker and weaker without IVIg, being dizzy and ditzy from WNV, lupus flare-ups from heat and sun, lipodermatosclerosis, the hole in my belly, the huge hernia, the rectocele and cystocele, arthritis all over, holes in my intestines, the fistulas, edema, anemia, repeated infections, spinal degeneration, partially collapsed lungs, asthma…and on and on and on. Nothing really goes away. I just add it to how I feel. I endure and I adjust. And then I wonder why I feel like crap every day!!!????!!!!!
I wrote down a list of docs I have seen in their offices in the last two years. It’s more than 30. Add the ones I have seen in the hospital and it’s more than double that number. Do I feel jerked around? You betcha! Most of the time anything done to actually help me only came about after multiple ER and doc visits for the same issue. I had to tell the docs to test me for WNV. I had to keep insisting I had belly infections. I had to quit breathing to get help. I had to defy ER personnel to be seen for both the incision and intestinal infections. I had to insist on a blood transfusion. It has been nothing but a fight. I am sooooo worn out :-( What good are all those blood tests and X-rays, CTs, MRIs, etc if they don’t ACT on the information? It has been both criminal and shameful. It would have been way cheaper and easier to just give me the IVIgs from the start. I wouldn’t have all this permanent damage. These are large corporations using me for their gain. It has very little to do with making me better :-( On the other hand, one of the manufacturers of IVIg calls at least weekly to offer to try to help me get IVIg. I am just a pawn for both sides.
OK, I just got back from talking to the manager. I told him I would like to move to the PNW. He signed me up for senior housing info from there. I called the apartment I would most like to live in and requested an application. The waiting list is 6 months to a year. It sure would be nice to only spend 30% of my income on rent!
Ah ha ha ha ha! The group that helps find senior housing was all syrupy sweet until they found out I am low income. Then she couldn’t wait to hang up. I am glad I already called the place I was interested in. I am sure the company gets a sizable kickback from the more posh places.
Now to figure out the logistics. I also need to do all the things that I can around SLC while I still can. I would love to see the zoo :-) Heck, 2 years and I have never been in the museum two blocks from here. I am glad I have made it to Temple Square several times. I wish I could spend more time in buildings. I would like to go to the family history library some more.
Interesting that one of the blog readers said I needed a ride to the PNW like a dog gets rescued…passed from person to person for each leg of the trip. The manager suggested the same thing :-)
If I move to a studio apartment, I won’t need much. That’s OK, I don’t have much. If I gave away the clothes I have outgrown, the food storage I have amassed thanks to the free table, half my books, etc, what needs to go isn’t much at all.
So, the most excitement today was making a phone call and eating. I had a bowl of crockpot beef and a gluten free blueberry muffin for breakfast. I started the beef at 2 AM. By lunch I still had almost no strength. I decided to have a bowl of tomato basil soup from a can that I adorned with Parmesan cheese and freshly ground pepper. I got the can from FNB and it was way past the expiration date. I ate these crunchy things with the soup. Not bad! I would never buy something like that. Sometimes FNB food is a pleasant surprise :-) For supper I had 2 artichokes dipped in mayo with a fresh squeezed lime and sriracha sauce. Almost everything I ate today was courtesy of FMB. Thank you!!!