I know, I haven’t written at all in so long, let alone given an update on my health and health management plan. My last update was about a year and a half ago, and I think I can say confidently that not a whole lot has changed, taken in both a positive and negative way.
The last time I updated this space with a health update, I talked about getting a new, better (read: more accurate) diagnosis of Rheumatoid Arthritis and starting a new biologic treatment called Actemra. The great news is that over a year and a half later I can still say that this medication is managing the disease and inflammation better than most things I’ve tried in the past. My bloodwork has consistently been very low when it comes to inflammation makers. As in, 0.5 last time I checked my CRP numbers! Guys, I’ve never had a number that low since I originally got sick back in 2011/2012! Insane.
That’s not to be confused with being symptom-free, however. And to be fair/clear, symptom-free is not a state of being that I really aspire to either. This gamete of diseases having a party in my body are not going to ever go away. There is no such thing as zero pain or zero symptoms. In fact, aiming for that is setting myself up for failure. And I’m not saying that to be negative or a pessimist, not at all, but there is a level of realistic expectations as well and I believe it’s unhealthy for my mental health to believe otherwise. So yes, I’m still in pain every single day; yes, my other diseases are not nearly as managed as the Rheumatoid Arthritis; baby steps are the only way to live a new normal of chronic illness and autoimmune diseases though. And THAT’S OKAY!
Nevertheless, let’s talk a bit about what’s NOT managed. Take a guess, I bet you can….
DING DING DING! Fibromyalgia, folks!
Not a surprise, but still a pain (literally) and a frustration. Since I was diagnosed with Fibromyalgia back in 2012, I have never been able to find solutions to truly manage the symptoms of this disease. Sure, the anti-depressants help a bit (if you aren’t already aware, anti-depressants target the same receptors in the brain that are believed to be the overactive pain receptors of Fibromyalgia…not to be confused with thinking this disease is “all in your head”). Nevertheless, the symptoms are there. And if I’m honest, Fibromyalgia is the source of my most debilitating symptoms from a day-to-day perspective. I certainly have bad days with Rheumatoid Arthritis pain and symptoms, but those are much fewer and farther between than the DAILY Fibromyalgia symptoms. The biggest handful of “life-interrupting” symptoms, as I like to call them, are brain fog, pain, and fatigue.
Pain is pretty self-explanatory: it hurts, haha. Fibromyalgia pain feels like someone poured menthol or “Icy-Hot” through your veins, but not in a good way. More in a “everything burns and hurts” kind of way. But brain-fog and fatigue? Woof. Those are the doozies.
If you’ve never had brain-fog and/or fatigue, i’m sure it’s hard to imagine the reality of symptoms like this. Fatigue is so much more than saying I’m really tired; it’s about sleeping 10 hours but still feeling like you can’t peel yourself off to bed. It’s about having so little energy that by the time you get through a normal 8-10 hour workday or a normal 40-50 hour work week, you have nothing left in you to function like a “normal” human being. Fatigue and brain-fog are semi-related for me, but both coexist by themselves as well. Brain-fog is a bitch, guys. Like fatigue, brain-fog is so much more than “I have a terrible memory.” It’s the inability to remember ANYTHING unless I write it down. It’s having a sentence/thought process leave you in the middle of talking. It’s stumbling over my speech and my words all day and sounding pretty inarticulate.
I had a day like this yesterday at work. We have a new employee who started on our team and it was a mental mind-fuck for me all day trying to on-board and introduce projects and details to him. I was tripping over all of my words all day. I was jumping from half-thought to half-thought like I couldn’t finish one explanation before jumping to something semi-related. I was miss-pronouncing words all day. Let me tell you, all of that is even more frustrating than it sounds on paper too. Not only does it make me feel dumb, but it’s so hard to explain that it makes me think I give off an unprofessional or inarticulate vibe. Sure, to most of the people in my life I can say a simple: “Ugh I’m sorry, I’m having a seriously bad brain-fog day today,” but if you’ve just met me I’m not about to lead with “Hi, I’m Kristin and I have brain-fog so excuse my gibberish all day.” Yeah, that doesn’t work.
If you know me, you know certain things about me that you probably didn’t realize are the ways that I have trained myself to overcompensate for brain-fog. I take notes. And I mean, thorough notes from every conversation I have at work. I put so many reminders in my calendar that you would laugh at: “do laundry,” “put clothes away,” “bring tea to work,” “call Dad,” etc. Those seem like reminders that everyone would have in their day to day; however, it’s more than ‘I Forgot.’ It’s hard to explain but it’s like my brain can’t compute that that would need to happen naturally, or that a certain task would be a natural part of someone’s day. It’s really bizarre. Like my brain is actually blank at times and I can forget what I’m trying to do or trying to say in the middle of everything.
Anyway, all of that is to say that I am mostly managed with my diseases today. I am more pain-free from the biggest disease than I ever thought possible. On the other hand, there is a large chunk of my life and my health that still isn’t managed. It’s still not fully explained. I read a lot of scholarly articles, and follow a lot of peer chronic illness patients, and I resonate with some of their diagnoses more than I probably like to admit. So, truthfully speaking, I still think we’re missing something. I still want to have a clinical immunologist take on my case. I still think I have another disease that we haven’t identified. And that’s not about wanting more things to be wrong with me, or not embracing the positive treatment plan I have now. It’s not about that at all. It’s about knowing my symptoms, knowing my body, and knowing my health. I know that there is an underlying issue that we aren’t exploring well enough right now. I’m not sure what the next step is to explore that. Maybe I will tackle that in 2019, among many other large and daunting goals, haha.
Before I sign off from this Health Update, I’m going to briefly mention something that probably deserves an entire blog post or more of attention. If you know me in real life, or probably even if you follow me closely on social media, you know that being on steroids from 2012-2015 made me gain a bunch of weight. And if you know me in said mediums, you know I’ve spent the last 2-3 years trying to lose that weight, unsuccessfully. If I maintain my promise of being 100% transparent with you in this space, then I have to admit that it bothers me more than I allow myself to express on a day to day basis. Mentally, I’m miserable over it. I think about my weight every. single. day. and multiple times a day. And I feel like I’ve tried everything: Weight Watchers, Noom, Beach Body, Isagenix, Calorie Counting, etc. The worst part? Literally haven’t been able to lose a pound. Not one. So aside from continuing to eat healthy 90% of the time and walking/swimming whenever I can, what else can I do? If you have been in the steroid weight situation, what did you do? There’s a part of me that feels a little desperate about it. I feel like I have major life events coming closer and closer and I don’t know that I can accept celebrating those at this weight. So, I’m putting it out there to the Internet, because let’s face it, I’ve seemingly tried most everything else.
Until next time,