Infusion days make me tired. They make me think about every aspect of my life. School, health, love, what everyone else is up to, my weekend plans, my future, my future husband, kids, career…you name it. I think it’s because I am sitting there for 3 hours in silence with nothing but the sound of the machine pushing the medicine inside of me and the feeling of a blood pressure cuff squeezing my arm every fifteen minutes. Sometimes I am so tired that I look forward to my infusion because I know in a couple of days, I will feel better. Sometimes I just don’t want to be there surrounded by other sick people. I don’t mean that in a rude way, every single person there is strong as hell and always asks you how your day is going…it just makes me depressed to see them go through it, too. Realizing there are so many sick people. Today was one of those days. They come twice a month, every 3 weeks.
One thing that makes me happy is hearing the ring of a bell every so often. It means someone had their last chemo treatment and kicked cancers ass…makes my heart happy.
I can’t believe I had almost one year of good health. 2017 is the best year I’ve had since being diagnosed with myasthenia and gastroparesis. That is until I came down with the flu in December 2017.
Two weeks later…I was driving and all of a sudden I couldn’t focus. Everything around me started to go black and I felt faint. I had to pull over. I called my mom frantic not understanding what was happening, but we chalked it up to me just getting over the flu. I have had the flu once before, but this time it was different.
Over the next couple of months I would occasionally get that same dizziness and I just felt off. I am on a lot of medicine, so it’s very easy to blame that and my MG for being tired. But I knew it wasn’t that. After two months of experiencing this strange dizziness, I began to not focus very well. I have been having a hard time concentrating, specifically when I read. I read the words, but can’t process the information well. I often find myself rereading the simplest of sentences and not understanding what I just read. Then the dizzy spells started to come more frequently, maybe every few days. Until it was happening every single time I stood up. It was time I said something or I would eventually pass out. Well, that ended up happening, twice.
I finally went to the ER to get evaluated because with my medical history, it could honestly be anything. They kept me in the observation room and discharged me the next day with vertigo. I still wasn’t content with this diagnosis, but I agreed to try the medicine they prescribed for a week, and if it didn’t work they were to reevaluate my symptoms. A week went by and nothing made me feel better.
Then I was sitting down one day and my legs felt kind of funny, so I looked down and they were purple. Of course I was freaking out inside, but I try SO hard to believe I’m fine when I know I’m not. Doctors are looking at many possibilities…POTS, inner ear issues, etc. Basically the blood is pooling in my lower extremities causing me to feel faint and confused…it’s not returning to my brain and heart properly.
It just makes no sense. I lost 70 pounds last year, I became very active and started to eat literally perfectly.
I really hope to have my answer soon so I can just have a peace of mind.
So here we are now. An undiagnosed Warrior is what I like to call people who are sick, have no clue what the hell is going on, but still remain strong. You’d think I would be used to the feeling of them telling me that I have another autoimmune issue or possibly something else, but every time this happens, part of me wonders…why me?
It reminds me of 7 years ago when they didn’t think anything was wrong, but really I was fighting three autoimmune diseases at once. Only this time, I am not giving up until I know what it is.
Follow me as I find my medical diagnosis.