Life with chronic illness is full of ups and downs. January started out great. It lasted for 3 whole days. Then it went on a slow decline right up to the end. I just now realized that it is over. Today is February 1st. I was hoping that things would start going up. It hasn't happened yet.
I had two new year's resolutions. One was to write a novel. I was going to write 90,000 words in 3 months. The second was to record a Facebook live of me singing every day. Those are pretty ambitious goals. I stuck to them for 3 days!
What did I learn?
I need to take words like never, always and every day out of my vocabulary. I am not an every day kind of person. Even if I were there is no guarantee that I would wake up feeling well enough to sing and write 1,000 words each and every day. And guess what. I haven't felt up to either of those things since January 3rd.
I don't like recording live. I like to edit my mistakes.
January 3rd was also the last day I wrote a blog post. That post was published on www.dysautonomiasupport.org/blog That was awesome.
Last Saturday I received a letter telling me that my securities licenses had been terminated by my employer. That means that I have 2 years to go back to work and have them reinstated or I will have to take the exams again. Those tests are REALLY hard. I know I could pass but still. It is one more thing that I have lost to my illness. Logically I understand. I work for a business and business is about profit and maintaining my licenses is expensive. I was licensed in all 50 states and the US territories. That is a lot of money. Really, they are taking very good care of me. But....it still hurts. I would like to imagine my desk waiting for me encouragingly to get well. I like to imagine that the world stands still and cheers me on in my recovery. But, that is not reality. The stock market will continue and someone has been hired to take my place.
I finally got a prescription for IVIG. That is the next step in my search for miraculous healing. It was a lot of work to get it and then to get it to the infusion center. Then there was another communication problem. The hospital didn't submit it to my insurance for approval until I asked for the status. So, I will not start my treatments on Monday. I'm trying to remind myself of all the things I have to be grateful for. I had to call for a nurse (I'm in the infusion center now, getting fluids) to bring me a box of tissue and turn on the air because I was crying ugly tears and I overheated after calling the insurance company to see if they could expedite it. They said I would need to have my doctor fax the request to have it expedited. Then all the self doubt crept in. Can you believe I question whether I am worth having my treatment expedited? I still judge myself for not being able to go to work or climb a mountain. "Come on Susie, suck it up," I say.
What is IVIG? Intravenous Immunoglobulin. When I was a teenager I used to sell my plasma to buy diapers for my babies. Well, the people that sell their plasma are actually making it possible for people like me to receive IVIG. The immune sells donated are going to be injected into me in hopes of strengthening my immune system. I gave, now I will receive. It is very expensive. I have good insurance. (Something to be grateful for.) And they are really good about approving the treatments I need. I found an article about how IVIG can treat Sarcoidosis and Small Fiber Neuropathy. Those are both conditions that I have. I gave it to my doctor and that is how we got to this point.
There are risks involved. It can cause a headache so bad that it requires hospitalization. It can also cause stroke, heart attack or infection. But I am hoping for the best. My hope outweighs the risks.
I started keto again on the 19th. I was up to 201.8 pounds. Now I am at 196.6.
