I drove up to MD to see my doctor a couple of weeks ago. I decided to skip the luxury of a motel room (it's a 3 hour drive, one way) due to our rapidly decreasing finances along with the additional costly burden of prepaying for everything, then filing my own insurance claims with my fingers crossed that I'll be reimbursed for my Lyme doctor and my therapist's bills. (My Lyme doctor decided to no longer take medical insurance to avoid being harrased for treating patients like me.)
I came home from that exhausting day (a 3 hour drive, a 1/2 hour wait, a 2 hour appointment, another 3 hour drive) and fell into bed, relieved that my doctor had emailed my prescriptions to the pharmacy, making one less stop I had to make before I could finally collapse and start to recover.
It may have been the intensity of the day, my energy expenditure, the timing of the maturing bacterium, the distressing news that I received, or perhaps a combination of these things but, whatever it was, I went down for 12 days and I mean down. I could hardly get out of bed. I writhed in pain during the day and sweated and froze my way through the nights. When I didn't think it could get any worse, I got an excruciating migraine. Wow. I felt shockingly, frighteningly vulnerable and I think I really scared my partner. We're both feeling pretty jumpy still.
So, the bad news from the doctor was blood test results showing a seriously compromised immune system, to the point that he was initially going to start me on IVIG treatments once a week for a year.
From Wikipedia:
"Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled, polyvalent, IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in three major categories:
- Immune deficiencies such as X-linked agammaglobulinemia (XLA), hypogammaglobulinemia (primary immune deficiencies), and acquired compromised immunity conditions (secondary immune deficiencies) featuring low antibody levels.
- Autoimmune diseases, e.g. immune thrombocytopenia (ITP), and inflammatory diseases, e.g. Kawasaki disease.
- Acute infections.
I'm still educating myself on what these numbers mean and am grateful (again!) for my naturopath and general practitioner. My doctor decided in lieu of the IVIG treatment, that we would first try the PICC line for IV antibiotics and see how that works for me (since I had good luck with it 10 years ago) with the hopes that my immune functions will bounce back when the chronic infection is gone. I can already feel the insurance company fight coming on and feel the hot sting of tears of frustration and anger at consistently having my reality denied. I will endeavor to be the person I can be proud of through all of this.
Finally, I have received the expected and long awaited denial to my disability claim and now begin the appeal process. I expected this so I'm not feeling bad about it. My attorney is a very cool individual and is holding my hand every step of the way. If this doesn't work, I honestly don't know what we'll do. We certainly won't be able to afford my continued medical care. Perhaps I'll take the advice of a dear friend and call my congressman.
I sure would love a local support group, so perhaps I can put some energy (when I have it) into creating one. I think it would do me a world of good.
