I usually put together a few blog posts as “extras” in case main homestead posts slow down.
You’ll likely notice that this time of year, aka when Iowa turns into a snow globe or freezer, there are more “extras.”
Before you get too far into this post, I want to preface that I’ve been on the fence about coming forward with any of this information. I’ve scheduled this post, then unscheduled it. Then scheduled it, then I unscheduled it again. It’s been sitting in my drafts folder again for over a month because I can’t decide whether to publish the damn thing or not. If you are reading this, well…then I finally decided to publish.
While it’s true that I don’t have very many readers anymore (since I stopped linking my uploads to my social media accounts), I’m still conflicted about whether or not to share these health details. (Spoiler-I don’t actually share my specific diagnosis in this post, just what’s going on with symptoms and how I landed at a diagnosis. So, yes, the title is a bit clickbait-y).
If, for some reason, you were unaware, I am an introvert. I need time alone in order to process and recharge. But because of this, I also don’t always connect with people who aren’t in my immediate circle (which pretty much only include my spouse and best friend in LA). So writing about these things can be very cathartic. While there are some within my generation and those above me or below me generationally who don’t understand the desire to share personal information in a very impersonal internet format, writing about something I am going through and being public about it is sometimes the signal that allows me to accept what it is I’m going through. Cryptic enough for you?
I’ve been bouncing back and forth between acceptance of my limitations and declaring an all out war with my body-with a plan to take no prisoners. And grappling with the former is, frankly, annoying.
I will say, this post ends on a somewhat somber note; but I am feeling better mentally about my health. I decided not to change the ending, because I wanted to keep the integrity of the post the original way I wrote it-almost eight weeks ago. And, fortunately, some of the interventions from my medical team have been quite helpful with symptom management. Not always, there is no end to a chronic condition, but enough so that it helps sway the feeling of powerless I express at the end of this post.
And so that’s where you find me. Scheduling and unscheduling this post I’ve spent months writing and tweaking and…accepting. (Argh, how I loathe that word with every fiber of my all too sensical and logical being).
But I’m digressing even more than usual…so let me return to my original essay:
Often these posts are where you get a genealogical essay about my family, life event, or random musing. I often spend months editing and revising them. It’s like a fun writing assignment (I was one of those odd people who enjoyed writing essays in college) on a topic I’m completely comfortable with. One that has been sitting in my draft box for over a year I titled “Butterfingers.”
Unfortunately, it’s not about the candy loved by Bart Simpson (although it was also my favorite candy bar as a kid, and I do enjoy a good double meaning).
It is about my hands. And the gist of the essay is that, for as long as I can remember (even as a child), I’d often wake up with my hands clenched in a fist. My natural, resting hand position is a loose fist (most people have some type of curve in their resting hand/fingers), but mine is slightly more bent and cupped than is usual (a doctor has since explained this to me). On the one hand-pun intended-this seems to make my fingers very flexible in a forward direction that makes reaching tricky guitar fingerings easy for me. On the other hand, it’s also pretty uncomfortable at times.
Why did I write a post about my odd hands? Because, the older I get, the more frustrating it becomes. The aching of my hands worsens in cold weather (like arthritis does). So by the time March rolled around last year, I was having so much hand trouble, I thought I wasn’t going to be able to play my instruments. And I often respond to inner turmoil by writing out my feelings and thoughts.
You see, certain hand positions and gripping motions aggravate my hands. Playing piano aggravates it the most (which is why I teach only beginners at the music studio), holding a conducting baton comes in a close second, and marching percussion sticks also tend to wreck havoc on my small finger muscles in particular. The aching causes me to drop things I’m trying to grip with a pinching movement. Keys, my cell phone, pens…and don’t get me started on how my penmanship deteriorates throughout the day.
But the truth is, it’s not just the muscles in my hands that bother me. It’s all my muscles. And some of my organs too.
I have muscle spasms in my pelvis/hips that wake me up at night. Sometimes it feels like my pelvis is being squeezed in a vice. My feet/calves fall asleep when I sit in a chair with my feet flat on the ground and my thigh muscles vibrate and ache and feel like they weigh a thousand pounds if I haven’t been getting enough sleep or if I walk too far. At night, there are times my legs buzz and pulse so strongly that I can’t lay still. It’s gotten to the point where, it’s an amazing day if I don’t knock myself over by tripping over my own feet. And, the oddest of them all, my stomach likes to wander around my chest cavity causing hiatal hernias. Which no one can explain. But requires medical intervention so that I can eat again…and not vomit.
Since childhood (as far back as age five or six), I can recall being jolted awake from my muscles twitching. As I grew older, I figured I needed to eat more bananas. And until last year, I hadn’t thought much about it. (I had mentioned it in every diary I’ve ever kept-I’m now realizing, looking back at younger Jenna-and wondering how I kept neglecting the same complaints).
And I may have continued on, not thinking about it, until last spring anyway, when I was having trouble demonstrating on the drumset during lessons due to my hands aching and dropping my drumsticks. Naturally, this didn’t seem related at all.
And then, I also occasionally found myself having trouble walking Gus. Sure, he’s strong and it’s tricky to walk through snow and ice, but I’d get barely a mile before my legs would just…give up. We’d turn around on our walk and I’d have to sit with my legs up to try and…recharge them. That’s what it felt like. Like I had to recharge my muscles because my battery kept dying.
It hasn’t been something I’ve shared often. I don’t believe I’ve spoken even once to my parents about my middle of the night muscle spasms I’ve had since childhood. It felt….embarrassing? Like a result of me not taking care of myself. There is nothing more personally embarrassing or demoralizing than the thought that I’m not taking care of myself properly. Autonomy and self-sufficiency are my most valued characteristics.
I’ve just attempted to adjust my life. Get more sleep (even sometimes moving my bed downstairs for entire weeks so I could sleep better away from Tyler and Gus). I’d eat more vegetables. Or more meat. Or protein powder. Or cut out sugar. Or stretch more. Smoothies with pysillum husk. I even started meditating. I tried to exercise more (boy did that backfire). I tried to start running and increase my strength training.
And while all of this had been happening, I started experiencing headaches and migraines for the first time in my life. After nearly a year of worsening migraines and declining athletic ability, I sought help. You see, one night, my pelvis was spasming with such ferocity, that Tyler (who isn’t keen on doctors) suggested I have someone check it out. I was full-on mortified to see a doctor. I obviously wasn’t taking care of myself.
The first stop was to take me off of everything I was doing to manage my symptoms (including in my diet) and do bloodwork. And after that, a lengthy appointment about my history, any and all symptoms whatsoever (no matter how small or seemingly insignificant) with a specialist.
When I mentioned the muscle spasms that would wake me up at night, I was asked about my feet and hands. And I recalled that blog post that had been sitting in my drafts. Because, truly, I hadn’t even thought to mention my aching hands that had trouble holding onto items. I’ve had so many odd problems throughout the years, and so many doctors focus solely on my digestive issues, that I often pushed aside any other concerns.
Then started a series of questions and some unknown (to me at the time) checklist. It linked my allergies, my bloodwork results, my muscle spasms and hand aching, my heavy legs, my digestive problems, my hiatal hernias, the pain I feel from clothing and even my asthma and light sensitivity. Because it was all textbook…apparently.
Now, some of you may know full well where this is going. There are some main chronic conditions that share these symptoms. And a proposed diagnosis was shared along with what led to the diagnosis.
What I have affects the central nervous system, causing some short circuits between my muscles, ligaments and joints with my brain. And there isn’t a whole lot that I can do about it, because when it comes to the brain, despite all the technology and research, there is so much unknown.
What often happens with these types of illnesses, is that before the age of 40 the person has a sudden or serious enough change in symptoms to affect their daily quality of life. With that being the case, the fast decline/flare I began to experience in the summer of 2019 was no surprise to the doctor. In fact, it’s one of the reasons people mistakenly believe this category of illness only affects people in their 30s and older. I guess it’s kind of nice to fit into the box?
Besides the main illness, I have been diagnosed with two active viruses (one I was already aware of thanks to a skin biopsy years ago). And I feel the best way to explain them is this: You know how you can get shingles if you’ve had chicken pox? But just because you’ve had chicken pox doesn’t mean you’ll definitely get shingles? It’s like one of those stupid algebraic equations. Well, I have two very common viruses (that most people have as a child that cause a couple common child/baby/teen illnesses) that have never really left my body. So whenever they get a chance, when my body gets a bit run-down, they multiply to have a little party. Otherwise, they just hang out, throwing off my blood tests and trying to be discreet.
It’s vindicating to see all the connections…And yet, did I actually want to be vindicated? I have felt several times, since my first doctor appointment, that it may have well been better if I had been a hypochondriac. Then I could just “suck it up” and live by a “no pain, no gain” motto.
I’m not going to name what I have. Don’t worry, it’s not a Voldemort situation. It’s more of me not wanting that to be the only thing people ask me about. I have spent nearly the whole of eight years where the only thing people felt comfortable asking me about was my gluten-free status. (In case that isn’t a clear side bar: I was gluten-free for eight years with suspected Celiac disease).
When you name your illness, you also inevitably get a bunch of advice from well-meaning people about their sister-in-law’s miracle diet cure or their cousin’s son who discovered CBD oil cured their broken leg. After keeping a heath journal and visiting with my doctor, I’ve learned how well I take care of myself and all the interventions I try don’t really have much bearing on me having an illness. I NEED to let go of the shame I feel about not taking care of myself. My illness has nothing to do with how well I take care of myself, it just is. And apple cider vinegar or an avocado-fast or chair yoga won’t change anything.
The frustrating aspect of my diagnosis is that it’s unpredictable. I don’t have a progressive disease. I have one that flares. And while a person can try to manage flares with adjustments to their life and schedule, just management alone doesn’t preclude a flare of symptoms from happening. It’s an illness where you can do everything “right” and “healthy” with scheduled rigidity and still end up going through a flare.
Don’t get me wrong. I’m actually working with three other professionals (besides the specialist and my primary physician) to help with symptom management. But all the symptom management techniques in the world won’t cure me or necessarily impact a severe flare up. Sometimes it just happens.
And while I’m trying to process the mobility aides (yes, I have a cane now) and advice and lifestyle alterations these medical professionals have advised me about (including no cardio beyond walking); I’m actually trying to just remember who I am as a person. Because it’s easy to feel like I’m losing myself. I’m trying to remind myself of the person who loves walking the dog-regardless of how far I can walk him. The person who loves sightreading music and learning new songs-regardless of my limited hand mobility. The person who loves to cook from scratch-no matter the changing ingredients I can use or not use. The person who loves fashion-and has been embracing an all black color palette and occasionally sweatpants because my psyche isn’t much different from Wednesday Addams at this point.
So bear with me, as I do what I always do. Hold it together in public and crumble into dust when I’m alone. Because, it turns out, there is something wrong with me.