Sick

Sick

Sick (adjective)
affected by physical or mental illness

Tis the season. In the beginning, back in 2009, after my diagnosis and starting treatment, I got sick. Like normal, regular, sick. It caught me off guard because, well duh, now that I had multiple sclerosis, clearly I was immune to the likes of viruses?! Yeah, no.

Each sniffle, cough, headache, turned into a phone call to my neurologist. He assured me that yes, I can still get run of the mill sick and that it was really just a matter of re-learning my body, and that no I definitely was not going to die from having a cold.

What it did do was make me more in tune with the rhythm of my body as I hadn’t been prior. I paid more attention to the sniffles, headaches, and coughs, whereas in the past I would have just moved on or not even notice. Now I had two autoimmune diseases to manage, while being completely insulted that I could still get run-of-the-mill ill.

Fast-forward eight plus years since my diagnosis, I’ve noticed that I actually get “normal sick” less than before. Said neurologist told me that “they” think there is some protective factor from the medicine I take for the multiple sclerosis, though it’s anecdotal.

Lately I’ve been traveling like a road warrior, which I didn’t think would ever happen again. I didn’t think my body could hold up to this type of work, travel, intensity. And while it’s not perfect, and I’m definitely older than I was when I used to do it, I’m more than holding my own with my business and travel. Sure I have gastroenteritis with a cold as a cherry on top, and I have to watch that the asthma is managed, and desperately hope my currently overactive, fighting these bugs, immune system doesn’t cause an MS flare-up, I can still trust in myself and my body.

Lest you think otherwise, I am so proper sick. From my head to my toes, body ache, tissue mounds on the floor, ordering extra Scott from Amazon…sick. Now excuse me while I go back to the “library” to answer the song of the gastroenteritis minstrels.

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Treatment

 

 

Treatment planTreatment (noun)
a session of medical care or the administration of a dose of medicine

Today is the eighth anniversary of starting treatment for multiple sclerosis. My math skills are fuzzy at best, but if you figure 52 injections a year times eight years, that’s 416 injections, give or take based on illness, birthdays, etc. But for the most part, weekly injections, for eight years.

At the time of my diagnosis there were only injectables or infusions, not the oral meds there are today. One of the things I’ve learned both professionally and personally, often times knowing what you don’t want is just as, if not more important than, knowing what you do want.

Given what I do for a living, I was able to review the clinical trial and usage data and whittle my list of treatment options down to what I was willing to do. Although my body was in turmoil at that point, I knew I wasn’t willing to inject more than once a week. Inject, it’s an odd concept. I also knew I couldn’t do nothing, or only treat holistically as some recommended. That.was.not.an.option. Complementary, definitely, alternative, no way.

For most people the notion of doing harm to yourself isn’t ingrained. Having to do something as violent as an intramuscular injection, that causes flu-like symptoms, even once a week, seemed so violent to me. I could easily do it to someone else, just like I loved watching brain and heart surgery, but to myself? Hell.no.

Once I decided on a course of action, I ran it by my neurologist here in the U.S. before setting the wheels in motion in Basel. We hadn’t anticipated a delay in starting treatment, which I’d mentally prepared myself for, but another week more separated the start date from what was originally planned. I didn’t fully grasp the whole long distance marathon thing at that point, given I never endeavored to actually run a marathon.

The onset happened end of March and diagnosis middle of April, by the beginning of June 2009 my body was so sick, that starting on treatment was not only a way for the physical healing to begin, but a way to take “control” over a life that felt very much out-of-control. Starting treatment was also a step in the life is unpredictable direction. One of the worst diseases a type A control freak could get IMO. I was incredibly scared of what was next.

When the decisions were made and drug ordered, J followed by N came over to be with me. Although it was one of the worst times in my life, looking back it also showed me that I can ALWAYS come out on the other side and be ok. A few more bumps, bruises, and warts, but ok just the same.

June 5, 2009 was 1/4 of the injection (you increase the dose over four weeks until the full dose). We practiced on an orange and these little pin cushion type contraptions. In case you’re wondering, none of them ACTUALLY mirror that of injecting yourself. Even hospitals in Europe don’t have the same level of aircon that we have in the U.S. and sitting in the little exam room, learning my new skill, and then having to execute, left me light-headed and near passing out. The first injection was administered by the nurse. We would try again the following week. I needed a STIFF drink.

A HUGE shout out to nurses, because the nurse I worked with, A, at the University Hospital of Basel’s neurology clinic, was beyond amazing. She took one of the worst times in my life and made it as tolerable as it possibly could be under the circumstances. I was 4,000 miles away from home, in a healthcare system vastly different from ours. I will be forever grateful to her.

When I moved home to NYC, she was one of the last stops I made to say good-bye. And when I returned to Basel last year for vacation, she was one of the first stops I made. Going back to where I was diagnosed was bitter sweet, but seeing her was a happy occasion. When you live in an area with a large expat population, your patients come and go. She told me that I’m one of the few that has kept in touch. I couldn’t imagine not.

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