Hey, y’all. I’ve been debating how to start this blog for the past couple days. It seems each time I start to type, I go back and delete what I wrote. In truth, that’s mainly because I don’t know how you will react to what I will write. I don’t want you to feel sorry for me or be sad or worried. I’m okay. In fact, today I feel calm . . . calm and okay. Alright? So you remember that. I am okay.
I guess I will keep that introduction . . . and if I do, it needs some explaining, I suppose. Therefore, I will start with two words: Multiple sclerosis because it’s happening again . . . but when I say “again,” know I mean it in a way where I actually feel lucky. I have not had any true symptoms since first being diagnosed in 2012. Back then, it was May, and I was on a crappy overnight schedule at a high-stress, overtime-constant, little reward job. Still, I was getting married in a matter of days. Because of that, life felt amazing, colorful, full of energy, love, happiness. I was with James and we would be together for the long haul, holding hands until our skin wrinkled in each other’s grasp. Life felt sorted out, right . . . until I woke to find I was blind in one eye. It made me terrified, and I’m unsure what I felt more terrified of: not knowing what was happening to me or to have a label to what was happening. MS. Multiple sclerosis, which I am able to pronounce now, though back then it was a foreign word and my tongue just couldn’t bend correctly to form the “scleros” part. Look how far we’ve come though. Now, I have my dream job. I know, it sounds silly to many — a teacher? “What’s so wonderful, so rewarding about that?” those who are burned out, counting years upon years until retirement. The answer is perspective, which (putting it bluntly) those who say that lack. What’s wonderful and rewarding is everything. I am not reporting on the negatives. I’m not standing idly by and watching mess happen in the world. I’m a part of it now. I’m teaching, educating teens — teens, a time in their life when they need role models — I’m helping them. I’m talking about literature and we’re writing and reading and discussing . . . and I wake up often not knowing how I got here, but feeling so freaking appreciative that I did. That’s why — that’s why yes, I adore my job. I remember what the real world is like and I’ve seen firsthand the negativity and disgusting actions and hate and bigotry and death from the lens of news, and I’m absolutely grateful to be on the other end of life and learning and growing and sharing. So I have that. It’s true James isn’t here now, and for some reason that scares me more each day than it did in the beginning. I miss him. But he is busy, busy trying to find himself in this life, this world. Trying to sort himself out, and I don’t blame him. That’s what we made a “pact” to do when we separated — find ourselves. That’s what I have done, too. In the process, I have found a person I am liking and enjoying more each day. I am feeling comfortable with who I am, something I have never felt before. And I feel a light that I saw in others — saw in James mainly — radiate from me now. It’s a good, warm, clean light. That’s another reason why I’m thankful. I am a better person — by far — compared to who I was earlier.
I say all of that in hopes to convince you that I am okay, that I am lucky. Going that many years without any MS symptom is a reward. That’s why it’s almost my time now. It was supposed to happen much more recently than now . . . so I feel ready, prepared, like I’ve been waiting for this thing — for months, years — and now I don’t have to worry or wait or wonder anymore. I’m greeting MS this time . . . with knowledge and preparation.
First, I had a flare-up which is not like an attack. Like the word “attack,” that is harsher. Imagine going blind in an eye. That’s an attack. A flare-up is a reminder that you have MS, a sign that your body is still trying to hurt itself. That’s how I see it at least.
My first flare-up happened around December 3, a Thursday. I started noticing that I was dropping things. Tiny things that shouldn’t be dropped — my cell phone, a dry erase marker, a piece of loose leaf paper from a student handing in a journal. I’d drop them all. And bend to pick them up and walk and drop it again. And bend to pick it up and drop it again a few minutes later. My nickname in my family is Lucille Ball because I’m clumsy and get myself into trouble so I thought I just wasn’t being careful. Ordinary me. But it started to get worse. All that week, I kept dropping things that I was making a concentrated effort to hold more firmly, to grab tighter. And still, they would slip from my hands as if I were holding water. Each time it would startle me, too, to hear the item fall. I would think, “What? I could have sworn I was holding that right now” as I looked down at my feet where the item was and at my palm which was empty.
Then next Thursday, it got worse. I woke up and my limbs, mainly my arms, felt numb. It was as if I had layers of plastic wrap on then and I couldn’t quite touch or feel my skin fully. That was strange but still liveable and ignorable. It got worse, too, though. It was really hard to hold anything — not because I’d drop the item like before but because I was worried I would drop it. Everything felt so heavy — a piece of a paper felt like cast iron skillet and I just could not hold it for long. I hated cooking because the pots and spoons and plates were just so freaking heavy. And I felt exhausted, worn down like I ran the 10K all over again and then was trying to cook with fifty pound items. This is when I started to worry and started to talk to my family and my friends. They all encouraged me to go to the doctor, but I didn’t feel it was quite right yet. The hand numbness had, for the most part, disappeared in a week so I was hoping this would also. Plus, I had a week left before school let out for winter break, and I hate taking off. I could make it that week; I felt certain.
Exactly a week later though, I was taking a day off for an appointment to see my neurologist. The numbness in my limbs was still there and, more frustrating and worrisome, I now had this weird itch under my skin. I’ve read some articles from other people with MS that blog and they described it as “the itch you cannot scratch.” That’s because when you do scratch, it kind of hurts and doesn’t help. It’s like my body was saying, “Wait, hold on there! What the — what the hell are you doing scratching me? Stop it! Stop it this minute!” Another way to describe it is if you and I were standing next to each other and your arms were full of something, boxes we will say. And you say, “Hey! I have a really strong itch on my right arm. Itch it, please! PLEEEASE” and I scratch furiously the left arm. You would be confused and it would hurt and the itching wouldn’t go away. That’s how it felt. My body was telling my mind that there was an itch when in fact, there was none. And I read if you itch, that stimulates your mind to make you believe there actually is an itch so then it would itch. But still no comfort when you itched. It felt like tiny little bugs were under my skin on the left side of my chest, shoulder, back, and hairline so I would try to itch those bugs but could never actually reach the itch.
I promised my family I would go to the doctor when it got worse so I figured the itch was a step in the negative direction. Unfortunately, my neurologist was on vacation . . . for a month . . . so I booked with his nurse practitioner, who was amazing. She is actually studying MS further to become an MS specialist of sorts. She explained MS aspects to me in such a simple, concise way. Like lesions — I thought lesions were caused when there is damage done to the myelin sheath. That’s true, but what she said (the troubling aspect) is when the myelin is damaged, it kills brain cells. So . . . here’s a picture:
You have the myelin and there’s damage to it. This damage results in like half of the cell dying. If there is damage — or a lesion — on the other side of the cell, the cell dies. Completely. Therefore, MS is like a disease that kills brain cells. At least that’s how I see it right now. She said the brain is extraordinary and learns to cope without certain brain cells; it adjusts and takes up that cell or cells’ roles so that you can function practically the same. However, the trick is if there is too much damage to the myelin, too many lesions — eventually — the brain cannot cope and aspects of it cannot continue to take on extra roles. Eventually brain cells will die and speech may be slurred or it may be hard to walk or hold things. . . . Once a cell dies, it dies. Like life, there’s no way to bring it back from the dead.
That was troubling . . . but so well-worded that I felt I was understanding a little more about MS. Anyway, she suggested an MRI. This would prove how quickly (or not quickly — cross your fingers) my MS is progressing. If it is quick, medicine is going to have to be a course of action (even if it is slow though, it should be too) . . . and she did suggest medicine because it slows the process down. It slows attacks and flare-ups and lesions. It slows the progression of MS . . . which MS is a progressing disease. Like the cells, you can never go back, only keep moving forward and progressing . . . even though the sad part is the progression is never good. You may remember, back in January (almost the anniversary of this time), I decided to forego treatment because James and I were trying to start a family and medication causes birth defects (This was written here in Set Up). Not only that, but the medication came with a range of other side-effects, too . . . as every medicine does (That was here in Learning, a post exactly two days short today of the three year anniversary when I wrote it). I really don’t want to take medicine. Still. Every doctor suggests the shots, daily or weekly ones. This has been around for twenty-plus years so we have so much data — short-term and long-term. There are pills — one has been around for five years, one three years (that was when I was diagnosed and referred to as the “new” pill out), and one even more recent now. Those pill-years are like blips in time though; they hold practically no short-term data and definitely no long-term information. Shots are clearly preferred; even I know this, logically-speaking. But I cannot do it. The simple word “shot” makes me feel nauseous. Envisioning sticking a needle in my body, envisioning the fluid inside of my body — it makes me feel light-headed and faint. Hell, I’ve never even given blood (ugh, that word) because I cannot handle thinking about it. I know, I know — People keep saying, “You’ll get used to it. I did with diabetes” or whatever else but simply put, I won’t. I won’t. So I don’t know what I will do. Needles, shots — it feels like I am killing myself . . . which is strange because MS, is in a sense, killing (or better yet, harming) me. It’s a lose/lose situation.
But the answers and decisions all start with this MRI . . . which I was able to have scheduled immediately. In fact, I’m getting it done tonight. I got my meds again, those that help make me one-thousandth of a bit less anxious about being trapped in a tube while wearing what I call the Silence of the Lambs Head Thing. See here:
And if you’re a new reader, you’ll learn now that I am h-i-g-h-l-y claustrophobic. That Silence of the Lambs Head Thing stays on me while I go in the MRI tube thing that is barely — and I mean barely — wide enough to fit my Silence of the Lambs Head thing. And I go all the way inside the MRI machine. Its tighter than a coffin. At least that’s how it feels. A coffin has edges; it’s a rectangle after all. This is a cylinder so it cuts out that extra edge space.
And to be honest with you, I was simply trying not to think about the MRI and stupid Silence of the Lambs Head Thing because it really upsets me. And now here I am, talking about it and thinking about it and freaking myself out. Last time, I felt like a small child. All I wanted was my mom to come in there with me, for me to hear someone I knew, hear her talk to me while I laid there for about an hour. When they called me back though, they straight-face, no bullshit said, “Sorry. She cannot come” and lead me away. I cried so hard that it became impossible for them to do the MRI so they angrily went back out and asked her to come back. I’m hoping she can come this time. I just want to hear someone talk, someone tell stories or say something to distract me from the MRI. I hate MRIs.
I feel at a lack of what to say now. I feel like my efforts to show you I am okay, that I am lucky have failed. I’m not sure how to undo this failure, except that you have to trust me. When I think logically about the MRI, I know it is just for a moment in time and that nothing will happen to me and I will be able to breathe. I’ll be okay. I know I will. And whatever these MRI results show (which I will find out in about three months), I know I’ll be okay, too. It’s just hard when thinking about it all at the same time. It’s too heavy, in my mind. That’s why I’ll just stop here. I’ll be okay. And I’ll update you later to tell you I’ll be okay. And Christmas is coming soon. That’s exciting right? It is, it is exciting. So I hope you have a wonderful holiday because I’m going to see my family and I’m looking forward to more time with them.