I have mentioned it before, and I will probably talk about it again. One of the hardest parts of this disease is the unknown. There is of course the uncertainty of my physical future. Uncertainty of how I can handle that mentally. Something as small as a tingling in my hands can be a reminder of all that. It’s a physical nuisance that brings up so much more emotionally.
Today, that trigger is the cold I feel coming on. I met with a new neurologist recently, and discussed immune suppressing medication options. Disease Modifying Therapies, DMTs, as they are called in the MS world. One of my biggest fears and hesitations of starting a DMT from the get go was that I would be sick all the time. Right now, my head feels pressurized. I’m sneezing more than normal. And I have that tell tale tickle at the back of my throat. Is this going to be my life now? The trade off for a 70% chance that I can stop new lesions is that I am in a perpetual state of body-achy, boogery hell? Maybe I will just use more hand sanitizer, I think. But then I remember that I hate hand sanitizer. It kills the bad germs, but kills all the healthy bacteria that fights the yucky stuff, too – all the “good amoebas” I call them. Our bodies should have a thriving microbiome on the inside and out. I then remember that I also struggle with the whole vaccine issue. That is a whole other side topic, and I see both sides to the argument, but I’ve always leaned toward not getting them. Then again, I’ve always been young and healthy. Both of those features are developing and mean new things to me now.
Add on top of all that a layer of stress (my mind screams, “stress! Don’t stress because that makes things worse!”) because getting sick is a tax on my immune system that can cause a flare up. Flare ups are not only new and/or worsening symptoms for an extended period of time, they can cause irreversible and serious damage to my brain, spine, bladder or eyes. However, I need to accept that I am a person with a compromised immune system. I’m going to need all the help I can get, regardless of my resistance to this can of worms that Western medicine may open up.
The fact is my immune system does not work properly as it is, and it is just about guaranteed to not work correctly in the future. So how do I deal with that without driving myself insane?
I tend to be frustratingly indecisive about EVERYTHING. Ask my husband, I can’t order lunch without over analyzing the heck out of it. I can’t order a toothbrush on Amazon without reading all 1,500 reviews. There are a lot of people out there smarter and wiser than I am, and I look to them for guidance as I learn to hone in on my own intuition and live with clarity. I am currently reading the Power of Now by Eckhart Tolle. Incredible stuff, and I highly recommend this book no matter who you are. I am working on letting go of all of the second-guessing, pain, regrets, or “I should’ve done this differentlys” from the past. I am working on not obsessing about the future and all of the possible outcomes. I am letting go of expectations that things will get better once “x” happens. Because, as the book explains, all we ever really have is now. I promise this is not just some Millennial’s surface take on life. It is not an “OMG, YOLO” live in the moment call to action that tells you to abandon all responsibilities so that you wanderlust your way around the world and abandon all cares. It is more about the health of your state of consciousness. It teaches you to think of your mind as a tool, and to not let it high jack your entire existence. Wikipedia describes it this way: “The book is intended to be a guide for day-to-day living and stresses the importance of living in the present moment and transcending thoughts of the past or future.” Sounds like just what I need.
In addition to diving into my own personal enlightenment, I’ve been doing a lot of research on medications that the neurologist recommended a couple of weeks ago. I’ve been stressing a little about all of the pros and cons about how new they are, how they may affect my body, or the possibility of getting pregnant some day and what that might do to baby. (Ahh! Don’t stress!) But all of it depends on what my blood tests say. Among other things the neurologist is looking for, one of these tests is measuring antibodies to the JC virus. Antibodies = you have it currently or have had it at some point. JC is a virus that from what I’ve gathered online about 50% to 90% of the population has, they just don’t know it. You don’t display symptoms and it just kind of hides and lives in your body. It usually only becomes a problem for people with compromised immune systems, or those that are on Disease Modifying Therapies like the drugs for MS. It is standard to test for JC virus before starting and also during these MS treatments. The problem is that being on one of these DMT meds allows the virus to break the blood brain barrier and develop into PML. PML is a brain disease that kills 25%-50% of people who get infected. Yes, that’s a big range and also why Internet research can be frustrating and feel pointless. But basically, there is a significant risk with these medications that I need to be willing to take. The doctor explained it as a calculated risk, and he’s right. I was more likely to die in a car crash driving down to Lakewood from Breckenridge than develop PML. I thought about it yesterday snowboarding. I could hit a tree and die. I’m willing to risk that for fresh powder. Still. Easy for him to say as he objectively compares stats and analyzes numbers. His arms and legs and immune system still work right, of course he is going to say go for it. He doesn’t know how this FEELS. Then I say, “Aimee, these feelings aren’t fair. He’s trying to help me.” I tell myself to ignore those reactions, it’s just my ego trying to self preserve.
I do think the timing of my most recent flare up was no accident. It was Christmas Eve and for two weeks I had been in unbearable pain. My legs and all the way up half my back felt like they were on an icy-hot fire. My skin was super sensitive to the touch. My neurologist at the time was not in the office because of the holiday, so when I called in to report how I was feeling and ask for help, I ended up connecting with a new neurologist. My old neurologist was a general neurologist and also happened to be leaving the practice in a few months. I was given a sign, I think, that I needed to start considering incorporating western medicine into my health. Turns out the new doc I was talking with is an MS specialist. Who better to get advice from on how to manage my illness moving forward? I could go down the regret road and wonder why I didn’t see an MS specialist from the beginning. But, I was happy with her and how I was tackling this whole thing. I wasn’t ready to take medication, and even if I was I would have most likely been on different meds that might not have been as effective. It’s all happening just as it should, and I am exactly where I need to be.
If you pay attention, the universe really does send signals. One of my favorite stories I’ve heard after starting this blog and talking more about what I’m going through comes from my family down in Florida. My father-in-law was recently having some health concerns of his own and was at his doctor’s office getting things checked out. For no particular reason other than he was probably thinking about me at the time, he asked the front desk manager if she knew anything about what was going on these days with MS medications. Pretty random. She was just the lady at the front desk, not in scrubs or anything. And she works at the cardiologist’s office. She said, “I have MS.” What are the chances?! She went on to explain more about the DMT she has been on, and it sounds similar to one of the two my new neurologist is recommending. She also said that she has two healthy children. She was able to conceive and raise a family and she is doing great. My heart and mind just about exploded when I heard that story. These are exactly the connections I wanted to make in sharing my journey.
Despite all of my hesitations and fears, if I stop over analyzing in my head, I know in my heart, the new doctor is right. So. I’ll go on the meds. I’ll be proactive, be a good patient and educate myself. I will do all of the research, but I will also be patient and wait for the blood test results to come in. I have to try my best to be informed but not worry about what I cannot control. More than that, actually. I’m not going to tell myself to not worry, because the emphasis there is on “not worry.” (It’s like that thing where people say, “don’t think of a pink elephant” and then you immediately think of a pink elephant). And I don’t want the words “worry” or “stress” knocking around in the ‘ol noggin so much. Instead, I am going to find my inner peace. I am going to actively trust that it will unfold as it should. Those are my mantras.
I am making the effort to LET GO of the worry because as I’ve seen some of the results come through in my online patient portal I’m realizing I have no clue what they mean. I think I’m JC positive, but without the interpretation from the doctor I can’t say for sure. Nor do I know what it means for my treatment options. Did I do all the medication research for nothing? Can I still take the meds because relatively speaking my antibody levels are low? Do I even want to take the medication now? DOUBT DOUBT DOUBT sprouts up so easily. I was nervous about PML assuming I was going to be negative for JC virus. If it’s still okay per whatever thresholds there might be, is it crazy to willingly take that risk? I am trying to be the observer of these questions right now and not let them consume me. And so, I wait. I wait to get that call from the doctor to talk about what my blood test results mean. It’s Sunday, not much I can do about it right now. Control the controllable. Plus, it’s time to go play some hockey. One of my favorite ways to embrace the now. I’m too focused on chasing that puck around and not smashing into other people on accident to over analyze everything. I’ll keep you posted on what the doctor says. Wish me luck.