One year ago today, I woke up unable to see out of my right eye. I knew something was wrong, but I had no idea it was MS. The first weeks, I got steroid infusions, blood tests, MRIs, and met with various doctors. I learned I may have MS. Over the next year, I went… Continue reading One Year Later
Category: MS: The First Year
Privilege & MS
My MS started when I was 40. I had an established career, a comfortable income, savings, and excellent benefits. I was able to quickly and effectively get medical treatment, a diagnosis, and fight MS. If this had happened in my early 20's, when I was broke and uninsured, I would have been screwed. If it had happened in my 30's, when I was self-employed, I don't know how I would have survived. If it had happened even a few years ago, when I was living paycheck to paycheck, digging out of a post-divorce financial hole, and paying for full-time child care, it would have devastated me financially. In my 40's, I was able to fight MS.
I don't like taking medications. It's not that I'm an anti-vaxxer. I believe in science and medicine. I'm up to date on all my vaccines. I get the flu shot. And, I got my COVID vaccine as soon as I was eligible. I always have Advil and Excedrin Migraine on hand, but I rarely take… Continue reading Medication Resistance
This Is an MS Hug?
I woke up one morning to a steady pounding on the right side of my rib cage, just under my armpit . Thump, thump, thump. Every few seconds. Like a heart beat. It didn't hurt, but it was noticeable. A spasm. Constant. Every few seconds. I tried to feel it with my hand, to tell if my body was actually moving. I had my son put his hand on my side. He felt it.
Last week was the hottest day in Seattle, ever. And, the second and fourth hottest days, ever. Until this year, it had only been 100 degrees or higher three times; last week it was over 100 degrees three days in a row.
The first time I learned I might have MS was when I went to urgent care for my second steroid infusion after losing vision in my right eye and being diagnosed with optic neuritis. The on-call doctor, appearing on a video screen, asked, "You're hear for an MS relapse?" Umm..., "I haven't been diagnosed with MS," I said. I then spent months getting MRI's, a spinal tap, lots of blood work, a chest X-ray, and meeting, over and over again, with a neurologist and MS specialist.
Cold and Heat Intolerance
I'm a Pacific Northwest (PNW) girl, born and raised in the suburbs of Seattle. It does not get particularly cold or hot here. Snow is rare and short-lived. We have limited snow plows and deicers, and when it does snow, everything pretty much shuts down. Extreme heat is also rare. In my forty-one years, I've never lived in a house with central air (except when I lived in DC). Lately, our winters have been getting snowier and our summers hotter. I am not a fan.
Symptoms: Real or Imagined
When I first learned I might have MS, I read about every symptom. I became hyper-aware of every sensation in my body. Yes, I had a neurologist and an MS specialist, who ordered MRIs, blood work, and a lumbar puncture, but I couldn't sit idly by. While waiting for tests and follow-up appointments, I was on a mission to collect as much evidence as possible to determine whether or not I had MS. But, when you are fixated on something, it can be hard to determine if you're noticing real symptoms, or if you're imagining them.
My first symptom of MS was the sudden loss of vision in my right, on September 25, 2020. We were six months into lock down, working from home, and doing remote school. Life was at a constant level of high alert. The rules were changing every day. News was addictive, and terrifying. Shocking antics from… Continue reading MS Triggers
Exercise & MS
I've had an on and off love affair with exercise. I've spent months, sometimes years, religiously going to the gym three times a week. And, I've gone a year or longer without stepping inside a gym. I've done yoga daily, and then abandoned it for years. Leading up to my 40th birthday, in 2019, I… Continue reading Exercise & MS
Is There an MS Diet?
As soon as I knew I might have MS, I wanted to do something. I had to wait for a diagnosis and medication, but what could I do on my own? I read a lot about MS and treatment, and one of the first things I did was research if diet could impact MS. The… Continue reading Is There an MS Diet?
My MS Timeline
Sept 25, 2020: woke up unable to see out of right eye, eye doctor, urgent care, optic neuritis diagnosis, blood work, start five days of steroid infusions Sept 29, 2020: brain MRI w/ contrast Sept 30, 2020: video visit w/ neurologist, some lesions on brain MRI, possible MS, referred for more tests Oct 2, 2020:… Continue reading My MS Timeline
I was anxious, but excited, to start the injections. I left work around lunchtime for injection training with a nurse. I drove to the doctor's office, parked, checked in, and was called back quickly. She asked if I had the injection with me. Um...no. No one told me to bring them. I guess that seems… Continue reading Injections
Starting a Blog
In the beginning of my MS journey, I had many sleepless nights. The steroids kept me wide awake, even though I was beyond exhausted. Laying in bed, my mind raced with panic, anxiety, worry, planning, wondering, making lists, and processing everything that was happening. I texted updates to friends and family and chatted with my… Continue reading Starting a Blog
Should I Start Treatment?
I did not meet diagnostic criteria for an MS diagnosis, but I had optic neuritis, brain lesions, and Oligoclonal bands in my spinal fluid, all of which are consistent with MS. And, everything else had been ruled out. For women my age with optic neuritis and brain lesions, there is a 72% chance of developing… Continue reading Should I Start Treatment?