I am always fascinated by the way that my body changes. Max Shadow has been active lately.

For over a year, I’ve had trouble dressing myself. My leg muscles have been incredibly tight. I haven’t been able to raise my right leg enough to put my clothes on. At first, the muscles just hurt when I tried to pull my clothes on, but eventually, I could not lift my right leg. I had to guide my foot into my boxer briefs, pants and shorts.

Walking has been troublesome. When I walk, I haven’t been able to lift my feet off the ground at all. I can walk without a cane in my home, but I take it everywhere when I go out. I am always scuffing my feet and forever tripping over the tiniest crevice or crumb. I have a lot of bruises and goodness knows how I get them or what it was that I fell into, but their artistic in their own way. Now, my arms are covered in bruises from bloodwork and tattoos, but at least I know where those ones come from.

I’m so angry about it. I mean, I have been doing everything I can to beat my Max Shadow. I changed the way I eat, exercise, hydrate, make sure that I have a good sleep and meditate. I’ve been working on finding out who I am and loving the person I’ve become. Max Sadow doesn’t give a shit. Regardless of what I do, Max Shadow takes more from my body. He’s like a shadow that way. That’s just the reality of my situation. I put that anger into writing and painting so that it can be something beautiful.

My neurologist prescribed a new medication called Fampyra. I thought she said Elvira at first and that’s what I call the medication. I like to think of taking the medication welcoming Elvira as some kind of lovely guardian angel. Its purpose (without going into the medical explanation) is to relax my leg muscles enough to provide some relief from the pain and the difficulty associated with walking.

I’ve been taking it since the 29^th of May, and I’ve already noticed a difference. I’ve been scuffing my feet less and I’ve been able to lift my right leg in the shower so that I can wash it. Max Shadow is like that sometimes. It reminds me of what to be grateful for. I haven’t been able to do that for a long time.

Today, I was getting dressed after a swim and was able to put my right leg through the right pant leg of my shorts. Up until recently, I’ve had to grab hold of my right angle and lift the foot enough to guide it through. I cried a little, took a deep breath and then let my husband and my mom know. I’m choosing to believe that the medication is working with my magic and I’m okay with that.

And that is the good stuff.

I had an appointment with my neurologist earlier in May. We ended up waiting three hours to see them and then we were let go and promised a phone call. During the call, we talked about my issues and she recommended Fampyra. She told me what it would do and it sounded positive. We talked a little about the side effects, and she said that one of the nurses would reach out to me about the drug. When the call came it was to learn about the drug, she told me to be wary of the regular side effects like nausea, fatigue and dizziness that I had to be aware of and that there was every likelihood that the drug might not do anything. I agreed, because any kind of relief would be wonderful.

Then I got calls from a nurse from the MS clinic (Max Shadow is really happy that there is a whole clinic for him, he feels special), my nurse for the medication that would monitor my progress and the pharmacist. Clearly, this drug is a big deal.

The nurse had a few questions for me but then she started talking about a consent form. I asked her what she was talking about and she said that I had agreed to give my consent for the drug, or at least agreed to it. She then said something that made me stop short. “The doctor said that you are aware of the fact that it causes seizures and that I had no one in my family with a history of seizures.”

“But my brother has seizures,” I told her. “He’s been diagnosed with epilepsy.”

I was angry then and I’m angry now. I still agreed to go on the drug because any kind of relief is wonderful. She had me go through the rest of the questionnaire and she put the order in. I received a phone call a couple of days later from the nurse for the medication and she took me through what to expect or not with the new medication. I then spoke to the pharmacist. The nurse and pharmacist brought up the side effect of seizures and again I told them about my brother.

Thankfully, the nurse for the medication and the pharmacist told me how I could avoid experiencing a seizure and that it is a rare side effect. Still, I took it upon myself to read the thick bundle of information that came with the drug in the box. I downloaded an electronic version of the document and read through it.

The one thing that has really pissed me off is the fact that there is a warning near the beginning. It says that if you don’t have a mobility aid to start walking with one as the drug is known to cause dizziness. The only time that I’ve gotten dizzy was after my workout the other day. I  almost fell off of my yoga mat. It’s barely an inch thick, but it might as well have been ten feet high. In that moment before I was able to right myself, I was falling.

I always walk with my cane when I’m out and about anyways, but no one said anything to me. Not my neurologist, MS nurses, drug nurse or pharmacist. I was only given the Coles Notes version of information. I told my neurologist that I was one of those annoying patients that needed to know everything, but judging by how well my appointment went with them last time, the only thing I can do is continue to be my own health advocate.

I’m on a thirty-day journey with Elvira, but if things continue to go as well as they have, I will continue to take the drug. I could spend time agonizing about the state of our medical system, the lack of information that is given to patients before they agree to something or the fact that my consent was given without me knowing it. I could do that. Instead, I am choosing to be thankful for what the drug has given me in just this short time.

I choose to be grateful for this new path I am on and the new direction that I’m going in. Every journey begins with a single step and by my count, I’ve already taken several steps. I just need to keep going and see what this journey will teach me about myself and what I’m capable of.