The Gift of Hope: Part 1

The summer of 2015 marked a turning point in my life.  I was preparing to leave both the city and the career that I had called home for over a decade.  It was an exciting time, but it was also extremely stressful.  I turned 31 that summer and not long after my birthday, amid all the chaos of trying to sell one house and buy another, my dad had a bad fall while working out of state and was seriously injured.  He was in the hospital there for some time.  My stepmom went to be with him while my older siblings and I all pitched in to help our younger brother with their house and pets.

Back then, I was someone who was dealing with a low level of anxiety on even my best days, which meant everything happening at that point felt very overwhelming.  Little did I know, it was about to get so much worse.

I’ll never forget the day that I was sitting in the bleachers at my younger brother’s football game when I suddenly felt a vibration.  I looked around for my phone, but it was in my purse, which was sitting at least a foot away from me.  I wrote it off as odd and didn’t think much more about it.

Over the next few days, I had multiple occasions where I experienced this sensation of vibration.  It felt like a phone was vibrating inside my abdomen.  Being young and generally healthy, I still didn’t give it too much thought.  At some point, I realized that the sensation was only happening when I tilted my chin down toward my chest.  It was weird of course, but somehow I still wasn’t overly alarmed, or maybe I was just in denial.  I had never had any serious health issues at that point in my life. I didn’t even have a primary care doctor; I’d never needed one.  I couldn’t fathom that it was something serious when overall I was feeling completely fine. So of course I did the obvious thing, and asked Dr. Google for help.

There was something that came up in that search that did begin to sound the alarm bells, only faintly, but they were there. Lhermitte’s Sign.  It was described as a feeling of being shocked when your neck is bent or moved, which didn’t quite fit what I was experiencing, but did sound somewhat similar.  It was a symptom often associated with Multiple Sclerosis, a disease that I hadn’t ever even given much thought to.  Nobody in my family had it, or anything else for that matter.  We were all generally healthy people.  Then I read something that said this symptom could also potentially be associated with a B12 deficiency.  “Oh! That must be it.” I thought. I was a vegetarian at the time, and it seemed like a much more plausible explanation to me than MS. 

I took myself to one of those little drop-in clinics staffed by nurse practitioners and asked for a blood test. I fully expected it to tell me that I was deficient in B12 and then maybe I would need to get a shot or something, and that would be the end of it.  What I got instead, was a referral to a neurologist.  Only then did the fear really begin to set in.

I found a neurologist and made an appointment for a couple of weeks later.  The vibration feeling continued off and on, sometimes getting even stronger, and then I started noticing other odd symptoms.  They were mostly very subtle; a slight feeling that my dexterity wasn’t quite at its normal level.  A feeling of just the tiniest struggle to get a word out here and there.  I was trying my best to keep my composure, but panic was beginning to creep in around the edges.

When I finally saw the neurologist, she ordered some tests and scheduled an MRI for not long after my appointment with her.  I remember laying as still as possible in the MRI machine, listening to the loud alien sounding clicks and thumps, and asking myself, “How on earth did I get here?”  It all felt like a really terrible dream that I just needed to wake up from.

During the next couple of days as I waited for my MRI results, life’s chaos continued.  Work, house showings, house shopping…I had to pretend that I was fine because the only alternative was to completely fall apart, which simply wasn’t an option.  One evening after work, sitting in the car in a dark parking lot with my dogs as our house was being shown to a prospective buyer, I got an email from my online medical chart.  NEW TEST RESULT.

My heart began pounding so hard that I could feel it in my ears.  I felt both hot and cold at the same time.  I clicked the link that opened the radiology report. My eyes were immediately drawn to the two words that I had desperately hoped I wouldn’t see, “Demyelinating Lesions.”

That was it. I knew exactly what it meant.  I had MS.

I couldn’t believe it was true.  The only things that I knew about MS were the worst-case scenarios.  I thought about not being able to walk, not being able to talk, blindness, trouble swallowing, incontinence…I thought about needing help going to the bathroom.  As my mind raced and reeled around this new information and what it meant for my future (what future?), I did the only thing that I could think to do in that moment.  I called my mom.  Because no matter how old we get, when the monsters come out from under the bed, we all just want the comfort of our mothers, if we are fortunate enough to have that option.  Mine had the added benefit of being a nurse and I thought that that would help, but in reality, nothing helped.  Mostly, we just sat there and cried together on the phone.

In the days that followed, I started having panic attacks.  I became hyper-aware of every sensation in my body and suddenly everything felt like a new MS symptom.  There was a constant cascade of stress hormones coursing through me. I waited to hear from my doctor, but the call never came, so I called her office.  It turned out she was on vacation. 

I knew enough after doing plenty of research that one of the lesions on my MRI was active, which meant that it was likely causing ongoing damage to my nerves.  That was the first time in my life that I realized I had to be my own advocate as a patient.  I couldn’t simply trust that these medical professionals would act in my best interests because ultimately, I was just one of many patients that they were dealing with.  So, I persisted until they got a different doctor, who was covering for mine while she was gone, to do something.  We didn’t even have a conversation.  He just ordered a billion blood tests and gave me a referral for a steroid infusion. 

They use high-dose, intravenous steroids to treat an acute MS attack.  The steroids suppress the immune system and reduce the inflammation in the central nervous system that’s causing the symptoms.

Solu-Medrol.  2000 milligrams to be pumped into my veins, 3 days in a row.  Have you ever had to take a course of prednisone for anything?  Do you remember how it made you feel?  Here’s some perspective; an example of a course of prednisone for a bad poison oak rash might be something like 40mg per day for five days, then tapering down the dosage to avoid unpleasant withdrawal symptoms.  Solu-Medrol is also a corticosteroid like prednisone, but it’s approximately 5 times more potent.  Imagine being given 30,000 milligrams of prednisone over 3 days with no taper…I can tell you from experience: it’s not pleasant.

I went alone to a local hospital for the steroid infusion.  I arrived on the first day terrified, but as prepared as I could be.  I came armed with mints to combat the metallic taste that I’d read often accompanies the infusions, and my iPad full of downloaded movies to help pass the time.  When the nurse came in to get things going, I was so scared.  When I told her with a quivering voice about my new diagnosis, she gently talked me through what I could expect over the next few days and answered any questions that I had.  She checked on me repeatedly throughout the hours-long infusion and at the end she told me that she was working in a different area of the hospital the next day, so I would have a different nurse.  She wished me the best of luck, and we parted ways.  She was so kind to me that I couldn’t help but feel sad knowing that she wouldn’t be there the next day.

When I arrived for the second day of the treatment, I felt anxious and on edge.  Part of those feelings were of course due to the circumstances, but the rest were a result of the steroids themselves.  My new nurse was nice enough, but I still wished I could have the nurse I’d seen the previous day.  There was just something about her. She brought a certain comfort…maybe she reminded me of my mom in some way.

After my IV was started and I was left on my own again, I pulled out my iPad and put on a movie.  I’ll never understand why I chose that movie.  To say it was a terrible choice is a huge understatement. 

Still Alice is a movie about a woman diagnosed with early onset Alzheimer’s disease.  While you might not see an immediate connection between Alzheimer’s and MS, they can have many symptoms in common: Memory loss, cognitive issues, problems with speech, mood swings, depression, problems with vision, hearing, balance, swallowing.  Like I said, this movie was an awful choice, but I watched it anyway.

One scene affected me so deeply that I was sitting there in the infusion chair, behind my little curtain, sobbing.  Alice (played by Julianne Moore) had to use the restroom.  She was lucid, getting ready to go for a run with her husband, but suddenly she couldn’t find the bathroom in her own home.  She was searching for it behind every door, but couldn’t find it, so all she could do was stand there as urine began to soak through her pants.  Her husband came into the room and found her standing there, her pants visibly wet. “I couldn’t find the bathroom,” she said.

I remember thinking as I watched it that this is what I had to look forward to.  This was the first moment after my diagnosis that I remember having the thought, “If it gets that bad, I’ll just end it. I won’t live that way.”

It was then that someone poked their head around the curtain.  I expected to see the nurse who was caring for me that day, but instead I was surprised to see the sweet face of the nurse from the day before.  She had come from a completely different wing of the hospital, on her lunch break, just to check on me.  I don’t remember her name, but I’ll never forget her face, or the kindness that she showed me, and what it meant to me that day.

By the third day of the infusion, the steroids were taking their toll.  My body buzzed with a horrible feeling like nothing I had ever experienced.  My anxiety was through the roof, and my mind felt like a dark cloud had completely enveloped it. When the third day was over and I got in my car to head home, all I could do was sit there in the parking lot and cry.  While I am someone who has always cried easily, I don’t think there has ever been another time in my life that I have cried like that.  It came from somewhere deep within me that I didn’t even know existed until that moment.  Sorrow pouring out of a never-ending black hole inside of me that had replaced everything good; light, hope, joy, optimism.  There was nothing left there but dread.  I felt empty and alone.

It took me several days to crawl out of the horrific hole that the steroids had put me in, but in the end, they did their job.  With a little time, all of my symptoms went away.  I had an appointment scheduled with my neurologist a couple of weeks after the infusion.  During that appointment we discussed my medication options, and I chose the one that sounded the least terrifying.  It required me to give myself a shot once every two weeks.  I asked her a lot of questions during that appointment about other things that I could do to try to give myself the best possible outcome.  I mentioned diet specifically.  She told me that there was no evidence that diet made any difference in disease progression and that the medications on the market would be the best shot I had, no pun intended.

-Continued in Part 2-