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.

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.

My Diagnosis

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.


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. 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?