The other night my nine-year-old came out of his room hysterical and limping. I assumed he hurt himself practicing karate, a new dance move, or jumping off something. I tried to ask him what happened and he cried out, between sobs, that his foot was "bubbly." Did he break something?? After a couple minutes I… Continue reading New Symptoms?
My Glatopa Reaction
After giving myself Glatopa injections for almost two years, it had become routine. An annoyance that I did not look forward to, like taking out the trash, but routine. I'd figured out the best way to minimize the injection site pain and reactions. I still had injection reactions including pain, welts, and sores, but heat… Continue reading My Glatopa Reaction
I didn't know I had migraines until the worst migraine of my life took me out for three days. I was in law school. In was one of those classes that only meets a couple times a week, but for like two hours. It was an evening class in a small room with blaring florescent… Continue reading Migraines
New Year’s Resolution
I am one of those people who always makes New Year's resolutions. I've done Whole 30 a couple times and several 30 day fitness challenges. Yoga, squats, push-ups.. I'm a type-A perfectionist, so I set goals and I complete them, even if that means staying up way too late to get in my daily yoga. Of course there are benefits to eating healthy and working out, resetting yourself after holiday indulgences, and following through on goals. But, what I didn't realize for over 40 years was that New Year's resolutions are pretty toxic.
What I Fear
Because MS is progressive, you worry about what will happen in the future. These fears vary from person to person. A musician or a surgeon may be most concerned about not being able to use their hands, while an athlete may worry about not being able to use their legs. I play this pointless game in my head: if I could chose which MS dishabilles I will have, what would I choose? You know, like that "would you rather" game kids play: would you rather have a third nipple or an extra toe? Go ahead, Google "would you rather." Have fun! I ask myself, would you rather be in a wheel chair or not be able to see? And, on and on. I know it sounds a little dark, but for me, it helps put things in perspective. Like, would you rather not be able to ever open a jar again or need a catheter? See, not being able to open a jar is not that big of a deal. Well, for me. Someone might disagree. There are things I fear. Some big, some small. Some have come and gone. Others, I have yet to imagine. What are you afraid of?
What I Tell My Son About MS
I recently watched Selma Blair's documentary, Introducing, Selma Blair. What stood out most to me was her son. Her relationship with him, his journey with her through MS, and her fears for him. Her son is not much older than my son, and they were about the same age when our MS journeys began. So,… Continue reading What I Tell My Son About MS
One Year Later
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
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