Weeks 14 & 15 - Post Lemtrada
January 31, 2020
Crazy that we are already a month into 2020. We had friends visiting the last half of last week and into this week so I missed a post...sorry. 🤷 I hope they weren't too bored. I tried hard to keep up; we climbed a granite outcrop on Sunday and walked around town on Monday. Both days I was heading to bed around 10. Two days of being really active, kind of wiped me out for the next several days. My daily "bucket" of energy is definitely smaller than before and when it's used up; I am done. Luckily, my husband is a pretty good tour guide.
Still no Rituxan 🙄 I logged into my insurance company's website last Friday and saw that they denied it and I got a letter from them this week saying it was denied because it was considered "experimental". I have not heard from my Doctor on what they plan to do but I do have an appointment with them on Monday. To say I was irritated would be an understatement; insurance companies are a necessary evil in this Country and I hate them. The health system in the US sucks and that's all I will say about that here.
My energy level in week 14 was still pretty up and down. I had mornings where I woke up feeling exhausted and it didn't make sense because I had slept well the night before and days when my energy level was fine. Even on the "fine" energy days, I still have a limited supply. If I spend the day running errands, I spend the evening/night on the couch. I also spent more time then I should in my head about how I've been feeling. Except for numbness in my legs *knocks on wood*, I have all of my typical MS symptoms hitting me all at once; light headedness (I haven't had since mid-month), spasticity/ bouncing in my legs, numbness in my fingertips, forgetfulness/trouble concentrating, fatigue/lack of energy and just being in a blah mood. I took a risk by taking this medication, I never felt better (except when I was on steroids) and now I feel worse. 😞 This week all my symptoms are the same but I haven't had as much time to be in my head. Yay for distractions! 👍
I've grocery shopped for myself three weeks in a row and I've actually eaten in restaurants! 😉 I am coming out of my shell slowly and nervously. I will definitely admit that it makes me nervous but I do tend to be a worrier. Oh, one of the doctors in my neurology clinic told me that after the Rituxan I won't have to take any new precautions because the Rituxan only goes after my B-cells and my T-cells are coming back at a good rate. That's definitely good news and one less thing to worry about. If and when I actually do the Rituxan.
I had my follow-up with the Functional Medicine Doctor today. I got results from the spit/cortisol test; the hormone blood test and the NutrEval test. Actually, for the most part things looked good. I have a few things that are a little off and maybe fixing that will make the difference. The most glaring thing was that I have very little probiotics which makes sense because I was taking antibiotics for the last 3 months. The second most would be my Omega-6/Omega-3 ratio because I don't eat much fish; that's an inflammation issue. The good news is I didn't have any toxic levels of contaminants, my thyroid levels look good and things that I am semi-low on can be fixed with a SUPPLEMENT. You should see my daily pill box! Hope it helps. 🤞
That's all I've got for now. I'll do a quick update on Monday after my Neurology appointment if there's enough to update you about. Take care
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