Living with Multiple Sclerosis (MS)

A post promoting MS Awareness

To describe living with a chronic illness, it’s going to seem like complaining. So take this more as a list of experiences, rather than a list of complaints.

I was diagnosed with Relapsing Remitting MS nearly 5 years ago. In that time, many things have changed. New medications have been released, my children are older and more independent, and my spouse is becoming accustomed to managing more when I am managing less. Notice, I didn’t comment that a cure has been found, or that I’m getting better, or even that I am “at peace” with my struggle. There will be no peace until there is a cure.

Relapsing Remitting MS is characterized by periods of exacerbation (relapse), when new lesions are formed on the brain and spine and I experience new symptoms, as well as periods of calm (remittance) where I regain some of the ability I lost during relapse. Think of it like 3 steps back, 2 steps forward. Every relapse leaves permanent lesions on the myelin sheath of my brain and spinal cord that impact my strength, coordination, and overall ability to move and function. Sometimes I appear to look “fine.” That is why MS is often called an invisible illness. You can’t always see that I’m struggling to form words, that I’m experiencing nerve pain, that I can’t feel the skin on many parts of my body, or that my hand won’t grip things properly. Other times my mobility is so impacted by MS that it’s clear there’s something going on.

When things are calm, I have to remember that it’s like being in the eye of a hurricane. Things may appear to be OK, but the chaos of relapse, of decreased ability and mobility is forever circling around me.

Year One (ground zero) included the process of diagnosis; which involved MRIs, multiple labs, and a spinal tap. My symptoms were numbness in my feet and legs. After diagnosis, I was put on a medication that I injected into myself every other day. Each shot cost $300 and made me feel like I had the flu. The chills were so bad, my teeth would chatter all night. I had to be constantly aware of how many shots I had, how to store them, how to travel with them, and how to manage the side effects in a way that didn’t negatively impact my role as a stay at home mom. After 9 months, the side effects were too difficult to manage, so I switched medication. At this point, I had a massive relapse. This relapse was so significant, I was unable to walk by myself or even move my legs while lying in bed without using my arms to manipulate my legs. My mind was foggy and things like reading a book seemed too challenging for the level of focus I could muster. My neurologist at the time didn’t take the relapse very seriously, and didn’t prescribe a treatment that would help me overcome the episode more quickly. It took months, and a switch to a specialized neurologist, to pull me out of that relapse.

With every relapse I must manage multiple MRI appointments, lab work, neurology appointments, pharmacy and IV steroid arrangements, and find assistance with my family responsibilities.

Year two began with another medication switch. This new medication required 1 day a month set aside for infusions as well as lab work. It had fewer side effects and I started to feel more like myself. Each infusion billed $21,000 to insurance. My family was, and continues to be, truly thankful everyday for having good insurance. Even with good insurance, I paid out the family’s yearly deductible for just my medical expenses by the end of January. Travel and other things had to work around my infusion schedule so I could be as healthy as possible. For the majority of this second year, I tried a drastic anti-inflammatory eating plan to see if that would help reduce the number of relapses I was experiencing. This became a major management hurdle, as I tried to figure out how to feed my family and myself. I continued to experience relapses and found that I had more difficulty with mobility and even bladder control. Steroids and Acthar Gel ($35,000 per vial) were unsuccessful in treating one of my more severe relapses and I was admitted to the hospital to do plasmaphereses. Plasmaphereses is a process that filters out the plasma in your blood, which retains inflammation cells, and replaces it with donor or artificial plasma. Thank you plasma donors! This process does involve getting a main line placed near the patient’s heart as well as a several day stay in the hospital to do the plasma exchange 3-4 times.

A relapse is an occurrence of new symptoms that last more than 48 hours. Most people categorize a relapse as showing new lesions on MRI.

Year three I moved to the top of the approved MS drugs ladder and decided to do a chemotherapy treatment that would kill my B and T cells (immunity cells). This treatment billed insurance $100,000 for a week of infusions. The idea was that this would be like a Ctrl+Alt+Delete for my cells and they would stop attacking the myelin sheath of my brain and spinal cord. I knew going into it that it would be a two year (possibly 3) treatment plan and that it would include high risks for developing thyroid disease, possible blood disorders, as well as kidney issues and increased risks for cancer. The alternative would be accepting that I would continue having relapses and possibly lose the ability to walk within a few years. My spouse and my medical team all hoped the reward would outweigh the risks. This treatment left me feeling sick and weak for nearly two months. Having a completely depleted immune system required that I avoid people, public places, and germs. All of my food had to be cooked. I couldn’t enjoy raw fruit or vegetables or even risk eating food from a restaurant that might not have been prepared safely. I quit the restrictive eating plan and just tried to get through each day as best I could. I began physical therapy to help with leg weakness, coordination, and pain. I missed so many of my kids’ activities. I was grateful for things like facetime to see school performances and games. It was an incredibly isolating year.

Year four I repeated the chemotherapy drug. The initial side effects were less than the first year and I seemed to be doing OK. Despite being careful about germs and other things, I caught a cold 6 weeks after my treatment and landed in the hospital. Within just a couple days, a case of the sniffles turned into multiple respiratory infections and an impressive relapse. I could not walk without the assistance of a walker, and only then to the restroom and back to a bed. I was listed as a fall risk and had to have someone with me at all times if I was not in bed. I am now familiar with the catch strap nurses secure around patients to assist if they start to fall. While in the hospital I did breathing treatments, physical therapy, and plasmaphereses. After more than a week in the hospital, I was able to walk on my own to come home. I did bring a walker home with me. Bringing home the walker was a monumental moment. I had accepted that my body couldn’t always do what a typical body could. The rest of the year was a constant battle. My immune cells just wouldn’t come back like they did the first year, so I continued being a total germaphobe and avoided people and restaurant food. MS relapse-like symptoms returned late fall and was put on steroids before the holidays. I sent my spouse and kids to my family for Thanksgiving so they could have a “normal” holiday while I stayed home. I couldn’t bear the thought of my kids and family missing good food and family time because I was too sick to do anything but lay in bed or watch TV. After this experience, I decided that I needed something to lift my spirit. I was feeling useless, especially since returning to teaching elementary school was not likely in my foreseeable future. That is what prompted me to start this blog and social media accounts @meltedkc. The recurrence of MS symptoms despite treatment prompted a trip to Texas to get a second opinion on next steps for treatment and I was faced with the reality that I might need to consider experimental stem cell treatments, or an alternative chemotherapy that would specifically target B cells to see if that would calm my flare ups. Just a week after returning from Texas, COVID hit. Any opportunities for stem cell research were promptly ruled out as options. I began taking a new drug, which requires an infusion every 6 months and keeps my B cells at 0.

Year 5 has been all about COVID. I suppress my immune system every 6 months during a pandemic. Roll that over a few times in your mind. Crazy? All of my choices involve serious risks. Family and friends make accommodations to help keep me safe. My spouse and children restricted their activities to help keep me safe. Every action and decision required that I weigh the benefits with the risks. The fear of COVID cannot end soon enough for me. Thank goodness the vaccines are moving. Throughout this year, I have continued to have periods of symptom flare ups, although it is unclear if I have any new lesion activity. I have acquiesced to the sensibility of using a cane frequently when walking more than a block which is both a freedom and defeat.

Managing my health when things are calm consists of planning around infusions that make me feel sick for a few days every 6 months, blood work and labs every month, MRIs of my brain and spine once a year, and trying not to “over-do” it on any given day. (I stink at the not over doing it part.) The reality for me is that I haven’t made it 6 months without an issue. There is no “normal” for me. I just have to take each day as it comes, give it my best, and let go of the rest.

Everyday requires immense physical and emotional effort to get up and do what I need and want to do to live my best possible life. Each day is not a gift, it’s a reward. I earn it with fortitude, determination, and a positive attitude.

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