Tag: gilenya
My left hand
I am still waiting for my first dose of the oral MS med. In the meantime, I am wrestling with a splint on my valuable, only-working left hand.
A horse! a horse! my kingdom for a hor…er, thumb!
I am still waiting for my first dose of the oral MS med and the requisite 6-hour observation immediately after. In the meantime, I am wrestling with a splint on my valuable, only-working left hand.
The next day, we drove up the freeway a few exits and pulled into the parking lot of a local gym. The hand therapy office was upstairs.
I was still in my wheelchair so I had called ahead to ask about accommodation. I was assured that I could use the elevator in the gym.
But instead, when we got there, we were confronted with the first of two "lifts" to get to the top floor. This was "the elevator." I wheeled into the first, which was only big enough for me and my chair.
Once OH had made sure that my brakes were locked, I pushed the button to raise the platform while he climbed up the handful of stairs and met me at the lobby level.
I rolled out of the cage and OH wheeled me over to the taller lift, and we repeated the procedure.
It was sooo slow and shook violently as I reached the top. I was annoyed by that but OH told me later that waiting for me and suddenly seeing that, "took 10 years" off his life. [Awww, so sweet!]
He pushed me into the therapy suite and we were directed to the small office at the back. By this point, I was not impressed at all and muttered to OH that in my opinion, I only needed to come this one time, and then could do the exercises or whatever by myself.
He told me to reserve judgment and we entered the office. And met the two very trained and super friendly therapists. I will keep the appointments.
I learned that the tendon that runs from the middle of my thumb to my elbow had become swollen and inflamed. Amazingly, the tip of my thumb, and the rest of my fingers are controlled by other tendons. The therapy consists of gentle stretching and heated massage.
Then my hand was traced and the markings were transferred to heavy plastic, cut out and warmed in water until it was pliable.
Finally, I was instructed to rest my elbow on the table in front of me and hold up my palm, bend my finger to my thumb in an "ok" sign, where the warm plastic was wrapped around my thumb and wrist.
The plastic hardened, straps were affixed, and I've been instructed to not take it off for six weeks, except for temporarily, to gently wash, stretch, and massage.
Yet another swerve
It seems that I continuously need to educate myself about my central nervous system, my immune system and how every new MS therapy works and what it is intended to do. Although I was never interested in science, I’ve become at least curious over the last twenty years.
It seems that I continuously need to educate myself about my central nervous system, my immune system and how every new MS therapy works and what it is intended to do.
Although I was never interested in science, I’ve become at least curious over the last twenty years.
I also learned that I could inject myself in the thigh weekly with a 1-1/4 inch intramuscular needle for about 3 years on my initial first-line therapy and then, after I developed severe liver toxicity and had to discontinue that one, daily with a 1/2 inch subcutaneous needle for almost 8 years on the next one.
Although I had always before been averse to taking any kind of medication, even aspirin, once I relented to this I started accepting the drug recommendations of doctors and other health care professionals.
I’ve sat through a 6-week IV course of steroids, a 6-month IV chemotherapy regimen, and two episodes of IV infusion with a second-line therapy.
In the past ten years, I’ve had a liver biopsy, a gamma radiation procedure, and many MRIs.
From one therapy, I learned that it is not more beneficial to suffer through fever and that taking acetaminophen to squelch it is not a cop-out.
From another, I learned that icing the area before I injected, as recommended by the nurse, made it painfully excruciating; using heat instead worked way better.
This underscores the idea that what works for one person does not work for another.
After my allergic reaction to it has disqualified the most recent therapy, I am now poised to try the next one, a new oral medication for MS.
Before I start, I have to go for an optical coherence tomography (OCT) test, an EKG, and a skin-cancer screening.
Like I said, I will now need to educate myself on this drug and why I need these tests. Watch for future posts!