How was I supposed to feel?
Then the “why me” question set in. Why did this happen to me? I’m a good person. I have always been kind to others. Why would this happen to me?
I went and saw the neurologist (I swear it felt like everything happened within a day, maybe that was the “time stopping” feeling).
And I was seriously so spoiled with all of my doctors…the neurologist was AMAZING **Shoutout to Dr. Ki S. Jung**. Both of my parents and I were in the room, again me sitting on that weird crinkly paper. And he came in, shook all of our hands, sat down and focused on me. Even though my parents were in the room, he knew that I was the patient there. And I really appreciate that. He told me he reviewed the scans, and that he could confirm it was MS.
He told me something very important in this first visit…he said “I know this is very scary for you and seems like the worst thing that could happen, but it’s a very good thing that we found out this early. Those things you google and see, are typically people who don’t know they have MS until later in life and have spent their entire life without treatment. But finding out early gives us the chance to get you on medication and manage this.”. Something along those lines. It provided some comfort, I will say.
I remember he said the medicine could be like $20,000 a year and I swear to god my dad almost fell out of his chair hahaha, I don’t mean to laugh at that because it is extremely expensive and I’m lucky I had amazing insurance, but I have to find a little humor in that.
The first medicine I was to start was Copaxone, a daily injection under the skin. Gross, that sounded awful. But the neurologist said even though it’s not the most pleasant, it has been around for a really long time and he would rather start there than with a medication that has been recently FDA approved and long-term side effects are unknown.
So…a nurse came out to my house and brought everything with her. She sat down at the kitchen table and showed me the “device”, how to use it, explained everything to me, gave me her phone number, explained possible side effects, etc. I can’t remember exactly, but I think she had me do the injection with saline or something to know how it felt. It was almost like an EpiPen kinda. But I have never seen an EpiPen so idk. This is what it looked like….
She told me to rotate around my body for the seven days out of the week. Left thigh, right thigh, under left arm (like tricep area), under right arm, stomach next to belly button, back of left hip, back of right hip. No place should be used multiple days in a row. She told me to set aside 45 minutes for after doing the injection to make sure I was okay. Wtf was this thing?Then she left and I was sitting there with a box of these things.
I did my first injection and OMGGGG, it felt like fire was shooting through my body. No wonder she said to set aside 45 minutes!!! It sucked. Each time I did the injection, it left me with huge, red welts on the injection site. Very unattractive. And definitely not that fun during the family beach vacation I went on that summer.
Then a little later that year, I had the reaction the nurse was telling me about with the shortness of breath and feeling very nauseous, and I was told to discontinue the medication. Long story short, I went from that to intramuscular injections once a week, to a pill twice a day, to an infusion twice a year. (Currently doing the infusion).
It’s interesting how being diagnosed with something like MS alters your way of thinking. I became grateful. Instead of asking myself “why me”, I began telling myself how grateful I am that it’s not something worse. I started thinking about how all of the other people who are diagnosed with things like cancer, diabetes, must feel. You begin feeling appreciative for what you have.
You get used to the MRIs, they aren’t scary anymore, they’re just a thing. You get used to going in and seeing a neurologist. You get used to having IVs put into your arm. All of these things that were initially terrifying, just become a part of your life that you adapt to.
I would say the worst part about having MS (for me), is that it is an invisible disease where you can’t really explain how you feel. No one can see if you’re struggling. It reminds me of when a woman is on her period…you are in pain, irritable, and dealing with everything that comes along with it while just going about your day and saying nothing about it; expected to just deal with it.
But just because other people might not understand, it doesn’t take away from what or how YOU feel. And to be honest, it’s a good thing that other people don’t understand, because their ignorance means they haven’t had to go through something like this before. And you wouldn’t wish it upon anyone.
You are strong, resilient, and fighting.