Newly married and in the prime of my young life, I had hoped for a different celebration on Valentine's Day 2002. I had been experiencing strange sensations for at least six months already. I had numb toes on one foot earlier that previous summer and about the time I was ready to go to a doctor, they had all returned to normal. It wasn't until, months later, I was holding a lit match and watched the flame get all the way to my fingertips without pain that I knew that there was something very wrong.
I had succumbed to many physical therapy appointments where I was told that I had thoracic outlet syndrome after having numbness in my fingers and hand or when I had experienced electric shocks when putting my hair into a ponytail. I had experienced a lack of sensation on various parts of my body. I had suffered through an exam where they applied pressure to my toes and I had to tell them if they were lifting my toe up or pushing it down and creepily not being able to distinguish the movement of my own toes without being able to see them.
I had gone through a spinal tap where the nurse wrestled with the bedrails of the hospital bed and the horror of the moment when she later checked the room multiple times obviously in search of something while I was in the prone recovery phase. My mother in law asked this ditzy nurse what she was looking for; turns out, she had misplaced the bag of spinal fluid from my spinal tap, leaving me with even less confidence as the biomedical hazard bag was MIA. Eventually, she found it and it was sent to the lab.
I had gone through a headache of excruciating magnitude in the days that followed my spinal tap that resulted in multiple attempts of a blood patch to be injected in an attempt to stop the spinal fluid from leaking out so that my brain could be cushioned appropriately again. I had to rest my head on the bathroom vanity while going to the bathroom as quickly as possible because being upright brought waves of nausea and bone crushing headache for days on end. (In these moments, I had declared that I would NEVER - I repeat, NEVER HAVE A SPINAL TAP EVER AGAIN!)
I had nervously gone through the experience of an MRI of my brain and spinal cord and was pleasantly surprised when they clamped a mirror over the face helmet so that I could see my feet and the technicians walking around in their command center. I was able to peek at the MRI images on the screen before I left and was excited that they had pointed out my wisdom teeth, sinus cavity, eye sockets, etc. and showed me some of the structure of my head without giving any particular details away.
My twin brother had teased that "at least we knew I had a brain now."
Despite all of these boxes checked off of the list to rule out countless other problems, I truly wasn't prepared to hear the words, "you have MS" on this Valentine's Day. ("What a crappy Valentine's Day" I recall a nurse telling me as I shared that I was relieved it hadn't been a brain tumor and was relieved it wasn't lupus.) I didn't know what questions to ask. I didn't know what my prognosis was. I knew very little about MS, other than my mom's uncle had died with it years earlier.
I did know that I had wanted to get to a bigger city or to a teaching facility because I didn't think I would be able to doctor with that ditzy nurse that temporarily lost my spinal fluid. We put my name on waiting lists in Milwaukee and Madison; either way, I had a long wait time.
Eventually, UW-Madison could get me in soonest so, we ventured there. I wasn't ready to bring home an entire bag of literature on MS treatment options. (There were four: avonex, betaseron, copaxone and the brand new Rebif.) I appreciated being able to ask my neurologist, "if I were your daughter, what would you recommend?" and appreciated the relationship he had made with my recently graduated pharmacist husband. (We were even given an autographed copy of the doctor's book because he thought my husband would appreciate the medical lingo.)
We had selected the brand new Rebif, an injection administered at night (so that I would manage to sleep off the flulike symptoms that came with it.) Unfortunately, my routine labwork quickly went haywire and I was pulled off of this medicine in a hurry. At that point, I was put onto daily injections of Copaxone - rotating between the back of both arms, the fatty upper hip, the tops of both legs, and stomach.
I faced more fears of the unknown and ventured away from my first marriage where I had been guilted off of MS meds because of the expense. I found and married Mr. Right while trying to find myself. Years later, welcoming a child into our new life.
Eventually, Copaxone came out in a different dosing regimen so I could do it three times per week instead. Another point in time, I tried Aubagio oral pill because I was done with injections - having suffered from needle fatigue and struggling to find fatty tissue to shoot into without breaking down any more surface area on my body. Doctor did a rapid flush to get the Aubagio out of my system when they blamed it for a skin infection. Coincidentally, I get that same skin infection seasonally every year since so, it likely wasn't Aubagio at all, but a seasonal allergic reaction. I was, unwillingly, put back onto Copaxone before finally trying my current treatment of twice a year infusion of Ocrevus.
I've battled nystagmus and momentarily given up driving (until pregnancy brought me into sudden remission and returned my vision.)
I've battled through bouts of vertigo.
I've had pain in my eye and altered color perception. I've choked down twenty-five prednisone tablets in one sitting on more than one occasion.
I've suffered left side weakness that brought face droop, weakened hand and inability to work my hip flexor to lift my foot off of a table that invited me to a few days in the hospital. I gained a whole new appreciation for stroke victims because I could see my foot, but I couldn't make it move; it was so frustrating.
I've felt years of phantom itching and burning sensations and the occasional sensation that my leg is wet, but it really isn't. I've felt like I've had a wad of gum stuck to the bottom of my foot more times than I'd like to count despite NOTHING being there.
I've suffered through spasticity issues and endured physical therapy, dry needling, chiropractic care, and massage in an attempt to tone it down. Eventually, we even used Botox.
I've lost my ability to lift my own arm on more than one occasion. Ironically, it hasn't even been the same arm each time. With perseverance and hard work, I got my arm back. It was frustrating to have to use two hands to brush my teeth and was mind-blowing that I could not make my arm work that was clearly attached to my body.
Of these hardships, also come great gains. I've lived through the introduction of more than twenty MS treatment options. I've gained a group of friends from a MS support group in IA. I've been honored by the National MS Society as a Rookie of the Year Volunteer and given a Sylvie award. I've been interviewed on the radio, newspaper, and television for my role as a group leader and as the MS Walk Ambassador. I've met Iowa's "Bachelor" and celebrated the MS Muck Fest bringing national attention to MS awareness. I've retired my UW-Madison doctor and found a place I feel confident in my current care. I've attended many lectures. I've enjoyed a Clay Walker concert from the second row and enjoyed an aftershow Q&A about his MS journey. I've discovered the local fitness center's classes for water aerobics, aqua yoga, hatha yoga, and Body Flow (yoga, pilates, and tai chi). I've found flexibility, balance, and strength. I've made myself a priority. I've grown healthier and stronger with time.
This doctor used to tell me how they would stack all the good years on top of each other and for every so many years, they would stack those on to predict prognosis of future. Once I had hit ten years with minimal progression, it was declared that it was a great indication for my future looking bright. I'd like to stand on a mountaintop and proclaim that I've made it TWENTY YEARS SINCE DIAGNOSIS and the view from here is still looking pretty bright.
I'm aware that current lesions in my neck have been named "game changers" if they become larger or in "just the right spot". I'm going to appreciate walking on my own two feet for as long as I can and appreciate the gifts I've been given.
I'm living my best life despite MS.
