Routines & Motivation ~ by Sam

I feel that title is lacking, but I did the best I could. I keep thinking I should come here and write something meaningful about things that are going on in the world ~ because so many things are going on in the world ~ and then I keep thinking, “Wait, what? It’s what time? I have to make dinner…or…Oh…you all already had dinner? I guess I should eat dinner. And like…do…something…” It’s been…you know…weird around here, as I am sure it has been for most people.  It’s been weird in ways that aren’t worth writing about, because there all the same ways it’s been weird for everyone: our 16-year-old is learning remotely, husband is working from home, all 5 of us are here all the time, it’s hard to keep track of the days, the time, etc.  It’s been weird in other ways, too.

I spent 19 days home isolating under doctor’s orders for symptoms of fever, cough, and shortness of breath from late-March through mid-April. It was…strange, and sometimes scary. I wasn’t hospitalized, and there was no known exposure, so I wasn’t tested. It got pretty bad, but not hospital bad, and for that, I thank my lucky stars. I may never know for certain if I actually had the virus or not, but , more than a month later, I still don’t feel fantastic.  I lost about 10lbs I didn’t need to lose while I was sick, and I’ve only gained back 2-3. I still get tired, and easily winded. It’s…well, it is what it is. I expected it to take some time before I felt up to speed again, but I am starting to feel a bit daunted.

On May 8th, while watching TV with two of the kids, I had what turned out to be a complex partial seizure, and ended up taking an unscheduled field trip to the ER. Not my favourite way to spend a day, by a longshot, but, after a few hours there, lots of tests, a consult w/ the attending neurologist, and a follow-up with my regular neurologist, I do FINALLY have a diagnosis. (Some of you might remember that I have in the past eluded to some unnamed medical issues ~ this is that.) So, yes, I have epilepsy. It wasn’t a great surprise, and I have been taking an anti-seizure med for some time now, but, hey, now, when filling in forms, I know which box to tick when I get to the question about whether I have epilepsy/seizure disorder.

So, now, officially, I have CRPS, fibromyalgia, Raynaud’s Disease, IBS, asthma, and epilepsy.  And I’ve been trying to recover from frozen shoulder since November, and, I have to say, that one is starting to get on my nerves, which I think might indicate progress.

I have a couple of meds I take to manage some of this stuff, and then there are some lifestyle changes that help.  Things like physical therapy, keeping a somewhat regular schedule, taking my meds on time, exercise, good nutrition, good sleep habits…Of course, the caveat is that some of these things interfere a bit with things like regular sleep, exercise, good nutrition, but, look, I’m not here to argue about this.  I’m just trying to do my best to achieve these things.  Really, I am.  I swear.  It’s just…I’m having a hard time, y’all.

Boy, I feel this has turned into a much whinier post than I intended.  Sorry about that.  I logged on here in the first place to talk a little bit about how I have been feeling unfocussed/unmotivated.  I want to establish a better daily routine. In my dreams (not the real ones, but the ones I make up) I want to get up every morning, take my meds, start my day w/ yoga, followed by a healthy breakfast. Instead, I hit the snooze button too many times, sometimes forget to take my medication until after breakfast (getting kid to school, when that’s happening), have nothing but coffee for breakfast, realize I am running around in yoga pants at 3pm, but haven’t actually done any yoga, feel light-headed, eat something stupid, because I have forgotten to eat all day, look at my messy house, get irritated and start trying to accomplish something ~ anything ~ get distracted and start doing something else, still don’t do any yoga, maybe realize it’s time to make dinner, if we’re lucky that day, but, more likely, there’s been some small disaster (a cat knocked over something and I have to clean it up, or the fence fell on the apple tree, or I took a jar of sauce I’d made out of the fridge for dinner, but didn’t have a good grip on it, dropped it on the floor, had to clean that up ~ bonus: floor’s clean), and whatever it was, there’s not going to be time left to make dinner.  I’m still wearing yoga pants.  I haven’t done any yoga. Or done my physical therapy, which I’m supposed to do every day. Or gone for a walk (which is also supposed to happen every day).  Or done any sewing, or worked on the blanket I am supposedly crocheting…and I keep wondering what it is I DO all day long.

Right now, for instance, I am sitting here doing this, and I know I need to pay bills and balance the checkbook. On the up side, at least later I will be able to look at this and know what I did ~ and I put in laundry earlier, so that will be done, assuming I remembered to start the machine.

I’ve been trying, in the past few days to “just do it,” but my body is still adjusting to a higher dosage of anti-seizure meds, and it’s kinda like, “HAH.  No, seriously.  Where’s the coffee?”

So, for now, I’m trying to take things slowly.  Of course, if you know me, you know this is driving me nuts. I’ve done yoga twice this week. That’s better than never. When I sign off here, I will probably do it again, and I might even practice my banjo, too (which would be the second time this week ~ and is a big deal, because I only started being able to hold it again last week). Maybe I’ll sew. Or maybe not. I did at least cut one of the curtain panels that needed to be hemmed yesterday, and I made dinner.

One evening recently, while I was washing veggies to prep them for the grill, I felt the ground swell under (and then kind of up through) me, and I had to call the kids to ask if we’d had been a tiny earthquake. We hadn’t, it was just me. I’m luckily everyone is here, and someone was nearby so I could go sit down, and the veggies got prepped.  We had fantastic veggie kabobs, tiny earthquake notwithstanding.

Veggie Kabobs

Unfortunately, I’m not here to give you any advice, or tell you that I have solutions to your organizational, health, or daily planning problems. Ultimately, my goal would be for things like taking my meds, doing my exercise and integrating the necessary healthy lifestyle habits into my life that will help me feel my best to become so much a part of my routine that it feels effortless. Maybe that’s a a lot to wish for, but I’ve always believed in aiming high.

Cold Hands, Warm…muscles? by Sam

One day last week, while I was making dinner, my hands suddenly turned bright red and felt as if I had poured bleach all over them. Thinking I must have come in contact with some allergen, I immediately stopped what I was doing, and thoroughly washed my hands. The redness and irritation greatly subsided in 15-20 minutes, but my hands remained irritated, and the skin was peeling, as if I’d had a severe sunburn. Over the next few days, the symptoms recurred, so I contacted my PCP via email, including a photograph of the initial reaction. I supposed there were three possibilities:
a) the CRPS was spreading to other parts of my body (rare, but not unheard of)
b) these symptoms, ‘though not like any I’d experienced with it in the past, might be related to Raynaud’s (to be fair, the symptoms were not exactly like CRPS, either, but it does involve both redness and burning pain)
c) this was something entirely new and unrelated to any of my previously existing conditions
     We played phone tag for a few days until I finally got a call from a nurse on Monday of this week. My doctor felt it was most likely that the symptoms were, in fact, a more extreme manifestation of Raynaud’s than I’d experienced in the past, and that, as my symptoms seemed to be getting more severe, it might be time to consider medication.  Hence, I was referred to a rheumatologist. That appointment occurred on Thursday of this week.
     As luck would have it, the medications used to control symptoms of Raynaud’s Disease are blood pressure meds; and, because my blood pressure is low, my doctor doesn’t want me to take them.  You see, unfortunately, they could cause my blood pressure to drop even lower, and this could result in dizziness and falling. Falling has already been rather a chronic problem for me, and it has been deemed an unnecessary risk, as has dangerously low blood pressure.
     So, I have been given recommendations to step up my efforts to stay warm. These include things that might seem obvious, like using hot water bottles and heated gloves/socks/blankets, warming creams, taking warm showers when I come in from being outside, making sure to keep my hands and feet covered and protected, even when I don’t feel cold, and keeping my core warm. They also include things that might seem a little less obvious, like increasing my salt intake, in hopes of raising my blood pressure, and building muscle mass. The challenge, here, my rheumatologist pointed out, will be striking a balance in which I work out to build muscle mass, but am careful not to accidentally lose weight. This will involve adding protein-dense calories to my diet, which means adding food to my diet.  (I know.  This doesn’t seem like brain surgery.  Stick with me.  It’s trickier than it seems.)  I started working on this as soon as I got home on Thursday. I immediately baked a loaf of peanut butter bread, replacing part of the flour with almond flour.  Then I made myself a peanut butter and jelly sandwich with it.  I figured, that way, at least I am getting lots of protein (and lots of calories ~ yay!)  Because that working out and not accidentally losing weight thing?  Believe it or not, that really is a challenge.
     I know. This all sounds sort of stupid. But…food is hard.  I mean, I have had food issues for a long time.  First and foremost, there are the lingering eating-disorder-related issues, which will always linger; but, on a more basic level, there are all of the food allergies and sensitivities.  I am allergic to milk protein (and elderberries, and echinacea, which don’t come up much, so that’s okay, really.  Oh, and shellfish ~ which never comes up, because I’m vegetarian, but does somewhat complicate eating at restaurants, or buying some prepared foods).  I also have IBS, and, while it seems to be fairly mild most of the time, it can rear its ugly head at any moment, and, at those times, it is triggered by: eggs, white/refined carbs (so, any bread, pasta, or baked goods made with that, white bread, white rice ~ basically, I do better with whole grains and more fiber in my diet), and fried foods.  Then, there are times when I think it is triggered by food.  Oh, also, stress.  It is also triggered by stress.  Then, add to that the fact that I am on a medication that makes it hard for me to keep on weight, even when I am not working out.  So, now, I am trying to eat the right things that won’t trigger my IBS, so I can be sure not to lose weight while doing PT, so my CRPS won’t flare up, so I can then work out enough to build muscle mass to try to keep myself warm ~ but not so much that I accidentally work off any of the extra peanut butter I ate.
     Because then, maybe I will be buff enough to haul in some firewood and build a big fire, and then we will all be warm.  By “we,” of course, I mean me, and all of my fingers.  And my toes. My toes are also cold, but I don’t see them often, because they are very far away, and usually inside several pairs of socks. I miss my toes.
     Ah.  But we have a gas fireplace.  So, forget about that firewood.  I’ll use my muscles to lift more peanut butter sandwiches, instead.
     On Friday, I didn’t manage to do much working out, but I ate pretty well.  I mentioned this to Hallie, adding my concern that, if I keep doing this, I won’t build any muscle, and all that extra protein will just be converted to fat.  “Well…fat will keep you warm,” Hallie responded, quite correctly.  And, so, I guess we’re good.  Because, the truth is, fat will keep me warm, and I really, really need to stay warm.  Nevertheless, I have always dreamed of being sort of buff.  Warm, and buff.  It sounds kind of dreamy.

     I guess I’ll keep working on the muscle-building thing.  To be perfectly honest, I was already working on that.  Which sort of makes me wonder if I should feel a little bit insulted at the implication that I need to build muscle mass.  Except…well, I really do need to build muscle mass, and I know it.

I guess I needed a New Years Resolution or two, anyway.  Y’all watch: by 2018, I’m gonna be stronger than I’ve ever been.  And warmer, too.