Orthorexia: a proposed eating disorder involving an obsessive preoccupation with eating healthy food. (Wikipedia)

In my 30’s — especially after my MS diagnosis (which was barely my 30’s, but whatever) — I made a concerted effort to “eat more healthfully”. To eat more of those plant-like things that I despised as a child, and still had to occasionally convince myself to eat.

When I severely flared up in 2017 and was told I may not regain left side function, I started exploring more extreme measures. During my hospitalization, I researched everything that was in my control. What exercise and diet regimes could help me?

If you’re familiar with any of the autoimmune diets, you know a) that they’re restrictive, and b) different people have slightly different opinions. While they’ll all say that sugar/alcohol/gluten/dairy are out, some also shun citrus and nightshades, for instance.

In any case, during that hospitalization, I drove their dieticians crazy, since I ordered limited items from their menu (I didn’t trust anything in a sauce) and I had people bring outside food in for me, from places like Whole Foods, who list their ingredients. The hospital apparently thought I was starving myself; no, I just was very concerned about what I ate, at the time.

Which led to several months of extremely restricted eating after that. I didn’t restrict calories, since that’s needed for energy; but I started restricting categories of food, since I feared another flareup and loss of function. No alcohol is easy for me, and so is no dairy, for the most part (also an IBS trigger for me); but no gluten, no sugar? No legumes? Those were rough.

But it’s SO easy to see how those of us in fear of a chronic illness flare can go down the path of orthorexia, or similar disordered eating, right???

Luckily for me, as I regained most of my function from that relapse and hospital stay, I relaxed my eating standards. I still don’t drink alcohol, I hardly ever have dairy (because it also makes my stomach hurt) — but those other categories? I don’t think gluten or legumes are a trigger for me, so I just minimize sugar and refined carbs… like anyone should, in my opinion. 🙂

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I am… maybe?

a19

Definitely! (Sorry, biology nerd.)

So, I haven’t posted here in a few years. However, my disease has changed, in a big way. MS used to be just a label — something I’d occasionally think about, mostly when filling out paperwork when visiting a new doctor. At that time, I barely had any symptoms — just some mild (MILD) disability that remained from my first 2012 relapse.

And you know, I’d gotten blase about it. Cocky, in fact. I thought that I was “immune” from major progression, because I didn’t smoke, rarely drank, exercised, ate well… (checked off most of the “good clean livin'” boxes)…

Then, my aggressive disease (as I’d been told it was, when I was diagnosed) actually proved itself. I was traveling, in early September 2017, literally on the other side of the world. (South Africa and Swaziland… excellent places to visit, despite my medical problems) I was hospitalized in Cape Town. I thought I stabilized — I was wrong. I was hospitalized here in Seattle again. I went from someone who was doing pushups and burpees the day before the trip, to nearly losing my mobility and independence when I returned.

I overcame it all (because that’s how I roll) and started on one of the strongest possible drugs to prevent future relapses. But just a few weeks ago, one of my routine MRIs showed a hint of possible new activity in my spinal cord… even on such a strong drug (complete with strong side effects).

Which leads me back here. I have been drawn to write again, about aspects of my journey. Partially so my facebook feed won’t be clogged with lengthy MS-related posts (ha), but also because, after the past two years, I want to use my position as a physiologist, educator, and MS patient to educate. I don’t know how frequently I’ll write (hopefully once a week), but in addition to the “it’s going to be OK” or the “X is a better drug than Y” hand-wavey explanations you see elsewhere, I want to tell you WHY.

Knowledge is power! (Science knowledge is MORE power!)

Be well.


machinists

28Sep16

So, like I mentioned, dealing with hand injury on my dominant side, and I won’t know the full extent until I see my doctor 10 days from now (MRI follow-up… initial injury over 5 weeks ago).

As someone with degenerative disease, missing out on this much strength training is really frightening to me! I can’t hold on to weights with a wrist and thumb injury.

I am somehow making do… I am using a lot of machines where I don’t have to grab. Typically I am a proponent of free weights — multiple muscle groups having to work in order to stabilize. But in times of need, the machines will do. Have I become a “machinist”?

I’ve also been using resistance bands as much as I can… I still have trouble fully holding the band, but I do what I can. All to maintain strength!

Yes, I am merely trying to tread water in terms of strength right now, rather than trying to build. We’ll see how much longer I’m stuck in a brace or with a nonfunctional hand…

Until then, I’m finding creative workout solutions!


video part deux

25Sep16

Again, sorry for the silence these days… I suspect a torn tendon in my right thumb and wrist. It slows things down, eh?

I made a second promo video for my fundraiser, which is now in less than a week! Watch me… laugh a while… pass it on, please! and enjoy. 🙂

The Second Dance MS Promo Video… Starring Brooke!

Thanks, everyone!


(Sorry for the post slowdown.. my right hand is very injured right now, and typing is a little awkward… doing what I can!)

But!

I made a promotional video for my upcoming Dance MS fundraiser. And I youtubed it! Please watch… it’s crazy/goofy, but it’s ME! This is the true me as seen by my students…

Pass it on!

Brooke’s Crazy Dance MS Promo Video


So… I’ve been wondering about my spinal reflexes. (Which has me thinking about new disease activity. I guess it’s time for yet another doctor’s appointment…)

Just over a week ago, I was unloading band equipment from our truck, the electric piano teetered in a way I didn’t expect, and… well, I caught it, and the piano didn’t get hurt. But I got bruised badly in a few places (namely, my right hand, which affects… many, many daily activities, being my dominant side).

Thinking back, while I was falling, it took a split second before my brain realized what was going on. It was as though the action started happening, and then I took action to try catching myself — but it was too late.

And I’m realizing, over the past year, I’ve had a few similar situations that have been weird, but I couldn’t quite put my finger on it: I trip over something minor while walking, and while others (with a normal nervous system) would immediately catch themselves and keep going, I sometimes fail to do so. Again, it’s like the split second of realization: “hey, brain, we’re falling! Let’s do something about that, body, why don’t we?”

I’m also realizing that I often subconsciously remove falling/trip hazards from paths I walk in the house a lot… I hadn’t known I was doing that, until I put this whole pattern together.

It’s instinctive, right, when we start to fall, to brace ourselves, whether with hands, through core muscles, or whatever. I was wondering if my otherwise-strong core had gotten weaker. But no… I’m thinking that it’s another victim of MS, where the muscles just aren’t getting the message quickly enough.

Reflexes are so instantaneous that most of them don’t even have to travel through the brain; many of them are processed in the spinal cord gray and white matter instead. (It saves precious nanoseconds, which matter, here!) But those of us with MS, who have damage in our brain and/or spinal cord, may have weakening reflexes.

I already knew my patellar reflex was weak — that’s the one where they hit below your knee with the little hammer. But that’s a function of the weakness of my quadriceps muscles, which has been one of the first to go, for me. And I work hard to maintain at least average strength — this is within my control.

But the general spinal reflexes going — this is scary as hell. You may have gathered that they serve as protective mechanisms. So, that I’m noticing a functional loss there… how much more am I going to lose?

Contacting my specialist soon. I’ve never had a thoracic MRI (which is where I think this loss of function is); on the other hand, what would they tell me other than “yes, you have regions of damage”?

Sigh. Keep on keeping on!


out of necessity.

A few months ago, I admitted my PTSD issues with IVs and infusions (bad, bad reaction to a drug I had pushed just over a year ago, where I had a lot of systemic spasticity to the point where my throat muscles closed up temporarily, and my entire body went into spasm — yay, bad Reglan reaction, and that was after Benadryl. I needed Haldol to stop the spasms that were so bad, I could not communicate…)

I didn’t even realize my issue until, when I simply had saline last fall for an ulcer flareup, I freaked out.

Yes. It was just saline.

A few weeks ago, I had another bad run of migraines (that’s been my “thing” recently; more on that later) and one was unresponsive to my own rescue meds. I sat on the couch one Sunday afternoon, feeling pain almost equivalent to when my post-abdominal surgery scar tissue was sticking to itself, and my gut literally tied in a knot. I knew the ER was my only option, because the toradol shot from Urgent Care that morning had done a little… but the headache came raging back.

I sat on the couch crying, because I knew I had to face my IV fear. Either that, or live with the crushing, nauseating pain…

So, I went into the ER and explained my fear/PTSD to each doctor and nurse who saw me. and they were perfectly fine with it. My husband/best friend was by my side, holding my hand as the saline drip started. (I watched everything — I’m one of those freaks who has to see the entire procedure to make sure everything is OK — and the RNs were so sweet about pushing all meds slowly, telling me everything that was going on… they were great. Props to Swedish Edmonds.

I hope to not need the ER for a migraine any time soon (two rounds of Dilaudid… and I still needed a Maxalt the next day) but I think I’ll consider them again if so…