As I write this from my living room, all I can think about is not being here. I have to stay at the hospital and get my infusion every week. I have to laugh with the nurses, I’m still amazed at how much easier it has been since I had the port-cath inserted than when they had to try three, four, or six times to find the vein. I should be taking selfies with medical equipment for my weekly #InfusionDay posts on social media.
But I’m not. Instead, I’m sitting at home thinking why I shouldn’t be, and honestly, I’m eating less. I got a message from the hospital yesterday saying that my period is over. They said my treatment was not approved by my insurance company. And they said next week it might not work, maybe.
For the past two and a half years, I have been receiving intravenous immunoglobulin therapy (IVIG infusions) to treat sarcoidosis-associated small fiber neuropathy (SSFN). SSFN shows damage to the peripheral nerves and causes dysfunction of the autonomic nervous system, also called dysautonomia. That sudden inactivity is what caused me to faint, fall, and break my foot last year.
Without this treatment, I may experience increased pain, numbness, and dizziness. After going without IVIG for a few months to get the COVID-19 vaccine last year, I experienced tremors again, from one finger shaking to my whole body shaking constantly. At the time, I thought I was sick and worried that I might have another serious problem to add to the list. My neurologist said it was SSFN, so while that was a relief in some ways, it also meant the tremors would return without IVIG treatment.
Although I have been doing this for many years, it must be acknowledged from time to time. This means that every year, I run the risk of losing support and aid. And it’s not just about IVIG.
Two years ago, my first prescription for Acthar Gel (corticotropin injection) was denied. I was there for five years, since I was diagnosed with sarcoidosis. I often call it my wonder drug because I saw a huge improvement, mostly overnight. I was devastated when he was suddenly rejected, and I was afraid to go back to my eternal Acthar nature. Fortunately, the pharmaceutical company had a patient assistance program that helped me get medication for the full year and a half of the claim process.
I am currently receiving medical treatment for my hip problems, but have had it many times over the years. With illnesses like sarcoidosis and fibromyalgia, I’ve experienced muscle weakness, fatigue, and what doctors call “deconditioning,” and physical therapy helps keep it from getting worse. However, most of the time, the insurance company wanted regular progress reports, and when they didn’t see me right, they fired me. It seems they did not understand that treating a serious illness is not the same as recovering from an injury.
There have been times when I couldn’t even get to that point. Recently, it was about the same hip. After several pain relief procedures, I learned about a certain type of nerve that can make a big difference. The pain management doctor said insurance wouldn’t cover it, so that was the end of the conversation. A few years ago, they could not cover a special diagnostic test to determine the cause of my breathing, perhaps.
Every time that happens, I feel fear, anger, and frustration at the medical decisions that have been made – to my detriment – that are different from what my doctors and I have decided (not to mention having symptoms that are not being treated). I feel powerless, helpless, and almost hopeless.
Almost, but I don’t lose hope; it’s just not in me. And I realize that I am also powerless. Not in the long run, anyway. This makes me want to advocate for better health care.
I just got a text from my mom, asking me what I’m doing on Wednesday. The only answer I could give was “I don’t know … maybe IVIG. Maybe recovery from IVIG. May suffer without IVIG. ” But I know that on Thursday, I have a meeting with my US senator’s office.
It’s not fair, it’s not right, and it’s not denying anyone access to tests that lead to diagnosis or treatment of their symptoms. Although I have been denied all of these, I know that I am lucky enough to have good insurance because of my husband’s marriage work. There are millions who do not have good insurance, or no insurance at all. We all deserve to do better.
Note: Sarcoidosis News is a site for information and information about this disease. It does not provide medical advice, diagnosis, or treatment. This is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your doctor or qualified health care provider with any questions you may have about a medical condition. Don’t ignore medical advice or delay getting it because of what you read on this site. The views expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to stimulate discussion on issues related to sarcoidosis.