If you have read my Who am I? post you know that last November I was diagnosed with Clinically Isolated Syndrome(CIS). The National MS Society states: “CIS refers to a first attack of neurologic symptoms that lasts at least 24 hours and is caused by inflammation or demyelination (loss of the myelin that covers the nerve cells) in the central nervous system.”
Since that moment my life has changed so much. My husband and I had to make some decisions to make sure that we were financially and bodily secure in the future, as we had no idea where this disease would take us. We got married with an intimate ceremony in our own home so that I could be covered by his health insurance. We would have gotten married anyways but this really sped things up. (Funny story, when we got married my husband had already ordered the ring a month before and was ACTUALLY planning on proposing that week. Little did he know he’d get the whole ball and chain!) We didn’t know what the future held. We just knew we would stand hand in hand and face it together…no matter what.
It could have been a six months before my next attack, it could have been years, it could have been never. That’s the thing about CIS. It gave me this shred of hope to hold on to that I wasn’t even sure was real or not. My rational brain tried to tell myself that no, most likely it was not real and that it WAS likely that this would not be my first attack. The optimistic, childlike, dreamer in me was still clinging though, clinging to a faint thread of that hope.
Yesterday, I got the results of my second MRI in six months. It wasn’t great. The disease has progressed and I have new lesions in my brain and spinal cord. The MRI showed that one of my previous legions had shrunk (most likely from the two rounds of steroid infusion therapy I had that first couple months) but the rest had stayed unchanged. My neurologist called me to talk about the results so that on Monday at our appointment we can dive right into the treatment options and make some decisions about symptom relief and disease modifying treatment.
I have been clinically diagnosed with Relapsing Remitting Multiple Sclerosis.
At first I took it really well. It’s funny, it was almost a relief that after six months of wondering and hoping and waiting, I finally didn’t have to wait anymore. I knew. That little thread of hope could go away now. And that is ok. I have spent many years feeling sick and not knowing how to describe it to people, wondering if I was crazy, wondering if what I was feeling was normal, but not knowing how to describe what I felt to people. Now I can put a name to it. A name that I am not ashamed of, but would be lying if I didn’t say I was a little afraid of.
It hasn’t been even twenty-four hours yet but I feel like I have gone through 8,764 emotions. It’s not like hearing this from my doctor was a big shock. I already knew I had CIS from back in November, and honestly expected that the diagnosis would change during the next few years based on the conversations I had with my MS Specialist.
Maybe I wasn’t ready to hear it so soon? Or maybe no matter how prepared you are there is no way to avoid the fear and the sadness that comes with a diagnosis like this. I am afraid of the side affects of the disease modifying treatments that my doctor talked to me about. I am sad for the things I know I am going to miss out on because I am going to be too sick, or too fatigued to attend and will need to put my body first. I am afraid that I won’t be able to be the mother I want to be someday.
And I am mourning. I love the life I have. I am mourning the fact that I am not even twenty-five years old and I definitely have a disease that I will have for the rest of my life. I didn’t even get 25 years of “normal”.
I know there are plenty of people who will tell me to be grateful it’s not something worse, that I’m not dying, that there are people who are worse off than me. But I feel that I have the right to mourn, to be sad, and to feel bad and scared. At least for a little bit.
But I will get back up. I won’t stay down on the ground where this news yesterday has knocked me on my ass.
I know I am strong. I have fought through scary and tough things before and I have come out the other side a strong woman, with a husband and family I love, a house and dog I wouldn’t trade for the world. My life is by no means “bad”. I love the life I have. Maybe that is why I am sad? Because it’s so unpredictable now, and I’ve never done well with unpredictable.
Not my happiest post yet…but it’s what’s on my mind.
“I don’t need a life that’s normal. That’s way too far away. But something next to normal would be ok. Yeah, something next to normal. That’s the thing I’d like to try. Close enough to normal to get by. You’ll get by. We’ll get by” – Next To Normal, The Broadway Musical