It has been a really beautiful day 🙂 I went to FNB.
Sliced sourdough bread, 2 bagels, 4 cups of yogurt, 1 quart yogurt, 2 red peppers, an habanero pepper, Chinese cabbage, kale, broccoli, bok choy, summer squash and a chicken pesto wrap.
Before I left, we had been talking about IVIg denials and approvals on one of my lists. That prompted me to write yet another email to the disability law center. Here’s their response….
I do have an update. After our last email, I got nervous that we hadn’t heard anything. So we called and checked on the status of the denial. They said that they had sent the denial on March 19th to both you and me. To the best of my knowledge, we did not ever receive that denial notice. I had my paralegal go back and look in our e file, and I don’t have any record that we received it. Additionally, I don’t believe you received it, or I’m sure you would have brought that up in the last several emails. Because we have to appeal a denial within 30 days, I went ahead and submitted the appeal last Thursday, so we can get a formal hearing. It usually takes a week or two to get the first hearing with the Administrative Law Judge scheduled, so i would anticipate that happening sometime in early to mid May. They are denying the treatment again on the basis that you don’t have MG.
I wrote back and said “Nope….no denial here, either. Thank you for resubmitting. My neuro recently wrote a letter to Paratransit for me and said “She has been followed in clinic for weakness, fatigue and speech problems and is getting worked up for possible myasthenia gravis.”
When I saw the neurologist on April 7th, he was just waiting to hear if my IVIg had been OK’d. I feel soooooooooo jerked around! Why “possible MG”?????? How many decades do I have to have this “possible MG” before it becomes real? This is my third decade 😦 I have had repeated hospitalizations for MG crisis. I get miraculously better with IVIg.
Is my neuro being pressured by insurance like my internist was pressured by them? All of this seems so very, very wrong. Life is short. I would like to live a little before I die.”
I am thinking I have reached maximum benefit from Medrol. Between being bummed out by my circumstances and getting less and less mgs. of Medrol again, my eye is drooping quite a bit. My insides feel hyped up from the steroids, but that doesn’t translate to energy. I haven’t got any. I feel like I weigh a bazillion pounds. My head hurts. I am very weak and it’s hard to breathe. I suppose that isn’t helped by our air quality. Particulates are rising thanks to wildfires. Pollen is labeled very high, especially from trees.
I told the manager that I didn’t want to clean my apartment for inspection and had been thinking of doing nothing. He said he knew the thought of that would drive me crazy, and I would do it anyways. I am not so sure. It’s as if there is an electrical storm happening on the outside of my skull. Buzzing, lightning strike pain keeps hitting a different spot on my head every few seconds. It makes me very weak all over. The damn tears keep leaking out. I don’t feel well 😦 I hate it when the physical and emotional pains gang up on me! Of course, I also have a fever going on. The night sweats were intense last night.
Argh! I have been doing cleaning in 5 minute bursts, then it takes a long time for my breathing and heart rate to go back to normal. And I thought I was weak before! Much worse, and I will need the hospital 😦 My phone rang and it never ocurred to me that my voice might have gone AWOL. Dang! My voice sounds like I feel 😦 I knew trying to clean was a very bad idea. I was just barely hanging on to personhood by breathing and keeping my eyes partly open. Now I am in bad shape. Grrrrrrrrrr…….
But there was some better news from the lawyers this afternoon. This sounds promising. “I didn’t think you had received anything. So to clarify where we are in the process– the good news is that this last appeal will actually go to an Administrative Law Judge (ALJ) and we can schedule a hearing where we can call witnesses to discuss why they believe you have MG–the bad news is that it can take a while to get the hearing scheduled and we will start with a prehearing phone call in a few weeks. I’ll let you know as soon as I get the notice on that. I’m so sorry that this process has been so decidedly obnoxious. I know that you have been fighting this battle for a long, long time, and I’m so so sorry that we’re still trying to get things figured out. I’m sure it feels exhausting.”
Why does EVERYTHING have to be so complicated? Sooooooo wiped out!
And guess where all our wildfire smoke is coming from? Siberia! Wow!!!!!
Ohhhh! I almost forget to say thank you for the cat litter that showed up at my door today 🙂 Nice happenings always welcome 🙂