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Monday, December 20, 2021

disease

I like to divide my life into sections. When I was in high school, it was by sports season. In college it was by semester. When we were expecting Isaiah, it went by week. And after he was born, it went by in months. 

But now, I see my life in Parts. Like a book. The first part, is everything before my diagnosis. Part 2 is now. That is what was, and this is what is. 

Like we rarely do, I had no idea that my second part began when I walked into the emergency room and said "Angela Terry, 31, I'm um...dizzy? confused?". 

That day wasn't the beginning, but it was the first time that we knew we were dealing with something more serious than a migraine. 

Two months before that, I lost my vision. I woke up one morning, and everything was an icy blue color. It was like looking through the sliding door blinds that my mom has had for 25 years. You can see most of the back yard, but there are longer blinds that aren't broken yet, and you can't see through those. It was like looking at my mom's backyard, but the blinds were blue, and like their name, were blind spots.

That day, my husband took me to the emergency room. I had all of the tests they give to someone who they think is having a stroke, and was diagnosed with nothing. The on-call neurologist that day was the quirkiest doctor I had met. He would ask a question, listen to my answer, and seemed to repeat my answer in his head. He read my MRI results and told me that I didn't have a stroke. But he wanted to repeat the MRI with contrast to see if there was something on my brain that the first scan didn't pick up. Contrast (Gadolinium) is given through an IV and goes into your body like a highlighter would be used on paper. You can still see what is there, but it enhances the image. 

After that second scan with the contrast, the doctor said "We've done a lot of tests here today and we don't know any more than we did when you came in. We could run tests all day, but you've already had some considerable ones done today. I'm going to discharge you and if you start having any new problems, come back." and the words he said next were the ones I've grown to never forget, but didn't know they were important at the time: "We just don't know. It could be nothing. It could be a migraine. You could have drank too much last night. You could be developing multiple sclerosis."

So, when I went back to the emergency room two months later, my mom dropped me off at the door. And while she was parking, I checked myself in. "Angela Terry, 31, I'm um...dizzy? Confused?". 

After the visit when I lost my vision, I followed up with my now neurologist. He diagnosed me with "pain-free migraines". He prescribed a magnesium supplement. My vision never came back, and I went on living life. I went on a hiking trip with my dad, and kept on. It was my son's first year in preschool, and I was there for drop offs and pickups while trying to manage my new vision loss. My workplace was caustic, and I was afraid to tell anyone there that I was having stroke symptoms because I didn't want my credibility to be questioned, but I was afraid to be there without anyone knowing. 

When I went to the emergency room for the second time, I got the same doctor. And he remembered me, and my scans. When he walked in he said "You're back!" and I said "Yeah, they say I've had a stroke this time." And he said "No, this isn't a stroke. I mentioned this last time, but I think you're developing multiple sclerosis". And he went on to explain that he wanted to preform a lumbar puncture on me. If you've ever had an epidural, I've heard that the process is similar. Your central nervous system has it's own lubricant to keep things working. That fluid can be drawn and tested for central nervous system disease. It's a very clear test, and it gives the best answers, but it's pretty fucking terrible too.

My mom and my husband had to leave the room. I had to lay on my side, curled into the fetal position so that my back was curved like a "C" and my vertebrae were as far apart as they would go. The nurse stood in front of me holding me still, and the doctor was behind me. They first numbed my skin so I wouldn't feel the needle, and then once inside, the doctor was able to numb something else. I didn't feel pain, but I felt like someone was taking a finger and pressing in a place where I don't ever remember having feeling before. It didn't hurt, but it was very uncomfortable. And I silently sobbed the entire time.

I told my son to be kind at school that morning, and was having a lumbar puncture that afternoon. After being told that I had a stroke and then didn't have one. 

After a lumbar puncture you have to lay flat for 60 minutes. I can't remember why, but it was something serious. And I wish this were the worst part. 

I really wish that was it. I wish I had gotten up off the bed after my 60 minutes, got diagnosed, and went home. But of course not. I stayed in the hospital for three days. My son lost his first two teeth. 

And the ugly thoughts crept in. The ones that told me that I was a horrible person for adopting Isaiah only to subject him to half of a substitute mom. The ones that said my husband was definitely going to leave me for a wife who could walk. It got really ugly, really fast. 

After my diagnosis, they were still concerned that I was at risk of a stroke, so I had to get an IUD. I had been using birth control pills to regulate my periods, and there is a stroke risk with birth control pills. And do you know what happened? The infertile woman in me came back out and said "Oh my god, are you telling me that I have MS AND I can't have kids?!" Like, let alone that I already knew that. Several doctors told me that. But this is how grief works. Even those who never had children struggle with accepting it. At any time. The final stage of grief is acceptance, but acceptance isn't always the end.

In my appointment with my gynecologist, she walked in and gave me a hug. I've never hugged a doctor before. And I burst into tears. And I finally said "is there an anxiety medication that can help me right now? Because I'm having a really hard time." And she said "Angela, I would be really concerned if you weren't having a hard time right now. 

That conversation has led me to therapy, psychiatry, and to write again. Taking care of my mental health is how I've gotten through all of this. The main way my anxiety would manifest, is that I would obsessively check the thermostat to make sure the heat/air was working. I would obsessively check the basement to make sure it was dry. And this weekend, we had a clog in one of our drains, and I didn't have one full scale meltdown over it. 

That is progress. And there's a great big beautiful tomorrow.


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