A couple of weeks ago I finally went to get my first round of vaccines. I was planning on waiting until my 1 year to get my blood tested to see what immunities I retained and only vaccinate against those but my hematologist and neurologist urged me to follow the normal revaccination schedule that HSCT (for cancer) patients have. It is also what the doctors in Mexico recommend. Some HSCT facilities advise against getting revaccinated but my motto is: Better to be vaccinated than dead from a preventable disease 🙂
It is very common and expected to have your MS symptoms return and or worsen when you are sick and your body is fighting something so this shouldn’t have surprised me but a couple of hours after I got home from the doctor after getting round 1 of vaccines, I felt horrible. I was light headed, nauseous, extremely tired, and so weak. I honestly thought that I just wasted almost $60,000 and my MS had returned and that all of those crazy anti-vaxers were right. Luckily after 2 days I was back to normal and feeling good. I guess this is what the HSCT rollercoaster feels like! Until this, I’ve been very stable so it was a little scary to feel so poorly. I’m relieved that I rebounded so quickly and now I know what to expect when I go back for round 2 on June 11.
It has been so crazy hot in Michigan lately and so far I’m tolerating it much better than I have the past 2 summers. My fatigue is still a struggle and I’m planning on asking my neurologist to maybe try a different medication to combat that because otherwise this summer break is going to be rough entertaining a 4 year old when all I want to do is nap.
My hair is absolutely out of control and I kind of regret hoping so much for these chemo curls. When I hoped for them, I pictured long curly hair, not this short clown hair that I have right now! When I’m in the shower, my hair is past my ears and almost into my eyes. When there is no product in my hair, I look like a cotton ball. When I have product in my hair, its short and super curly. I got what I wished for, just not what I imagined!
Today is World MS Day and I am so annoyed with how many emails and social media posts I’ve seen from the MS Society asking for money to find a cure when they refuse to look seriously into this treatment that has been scientifically proven to halt disease progression. I hate that I truly believe that they (the society and the majority of doctors) are blinded by the money they get from drug companies that rely on people wasting their lives and health taking their FDA approved drugs. They cannot have our best interest in mind if they remain so against treatments like this. It has been over a year since I stopped taking my disease modifying drug that only (maybe) slowed progression. I do not understand why this isn’t widely accepted. We have to be our own advocates and I am so honored to be a light to people diagnosed with MS showing them that there is another option. There is hope. We don’t have to continue watching our bodies be ravaged by this disease. So on this World MS Day, I’m looking forward to the day when I (and millions of others) can say that I used to have MS.
Adios, MS! 