So let me back up a bit.
As long time readers of this blog will likely remember, I was diagnosed with Lupus in 2009, just months before we made our first international move to Tugela Ferry, South Africa. (Link to my final post from Africa here.) It took about 2 years of symptoms before test results were conclusive enough to finally diagnose me with Lupus so I could start on a “disease modifying” drug, hydroxycholorquine. Two of those pills plus 5 naproxen and 1000mg of Tylenol a day was my daily regimen. Even so, it took 6months before I felt relief from pain (between 5-8 on the pain scale) and a year to completely get out of my Lupus “flare”. But then, I was virtually symptom free for a decade.
We did a lot in that decade: moved to South Africa, then Cambodia, then Myanmar, followed by Laos. In 2018, I started a graduate program in music at the University of Montana but then only completed a semester and instead took a music job in Butte, Montana.
By 2018, I was starting to get some new symptoms. And in 2019, after MRIs of my brain and spine plus a spinal tap, I was diagnosed with Relapsing Remitting Multiple Sclerosis. MS for short.
My neurologist prescribed a disease modifying drug. (Just like Lupus, MS is an autoimmune disease and there is no cure.) But the treatment was a daily or every other day shot. Anyone who knows me, knows how much I hate needles, so the prospect of a daily shot was just too much for me to stomach. And besides, my symptoms were relatively mild at that time.
But over the course of the last 5 years things have gotten slowly worse, with the last year being much much worse. So at this point, I am in excruciating pain at different times of the day. Pain that shoots down my legs from my spine causing my knees to buckle and my rolling on the floor writhing in agony. My vision is terrible, which makes me very scared for the future of my art career. And I have no balance and cannot walk at all without the aid of a walker.
But we’re really hoping this new medicine, prescribed by my new neurologist, makes an even bigger impact on my quality of life. My doctor says he’s seen really good results with this medicine and Stephen read the clinical trial results and they were very good. I had a training over Zoom with a registered nurse and he explained to me how the drug actually works. I won’t go into the details but to quote Matt Damon from The Martian, “they scienced the sh*t out of it”!
It’s so super cool the advances in treatments available to MS patients now. Even a decade ago, there were not these options. The FDA only approved this drug in 2016.
So today December 13, Friday the 13th! I started on a new drug therapy. Medicine by infusion. As I said in the opening, I was very nervous about this. My understanding of “infusion” until today was really only informed by TV, like Dr. Helen’s cancer patients on New Amsterdam. I wasn’t keen on having to avert my eyes from other patients also receiving infusions. On top of that, despite all the blood draws I’ve had over the years, I am not an easy case. It’s as painful for the nursing staff as it is for me. I have tiny little veins that invariably hide like Peeta in the Hunger Games. 😁
But the third nurse was the charm and we were off to the races. If horse races lasted 5hr 40mins. 🙃 I first received some premeds, a steroid and antihistamine, then the main event. To make sure I tolerate this new medication, I start with a half dose first. The 2nd half I get two weeks from now. And also to make sure I do okay with the medicine, the drip starts very slow, only increased incrementally as all goes well.
