Summer solstice with a side of water.

According to people who study the sky, today’s the longest day of the year. In my world, it was yesterday.

I’ve hit the two-month mark on my new (autoimmune disease) treatment plan. If I had to draw a diagram of the side effects and their weekly patterns, it would look like the “The Big Zipper” constellation, which hasn’t been discovered yet because it’s too snaggy to be plotted out. It gets caught on loose threads and puffy linings. You never know what or when. There are no reliable conditions, so it can’t be predicted.

There used to be a sort of pattern, but now it’s all over the map.

I almost got away with no severe side effects this week, and then a series of them hit yesterday out of nowhere: intense nausea, confusion/disorientation, headache, stomach pain, and thirst off the charts.

Everyone is different. No one has the same side effects, or the same configuration of them. Some people can’t take this medication even at its lowest dose, because they can’t tolerate it.

Daily folic acid tablets have kept my side effects to a minimum. You’re supposed to drink a lot of water, which I’m doing… even more than before, if that could be possible. I was already long into the habit of drinking water from the minute I wake up to the minute before I go to bed, and now I’m drinking even more water.

“Excess thirst” doesn’t seem to be a documented side effect, but there has to be a connection between this medication and my increased thirst! The first effect I noticed was the weird sensation of being thirsty while drinking water. It’s weird when water stops being quenching.

 

Water all day.

 

Things are going well, overall. I’ve only had one pain attack since starting the medication, so that is wonderful. My first round of liver and kidney labs came back fine, so we know that the medication’s not damaging them.

I check back in with my doctor in a few weeks… we’ll see what we see from there!

The End.

Possible mid-life crisis sighting: new glasses?! (+ 1st cardio class on new meds!)

I stepped on my glasses yesterday. They were laying on the ground, on the brick pavement part of our back patio, because I’m a brilliant genius. That’s right. Not just any kind of genius. A brilliant genius. Luckily, I was wearing cloth house slippers. The damage could’ve been worse. My expensive progressive lens sat perfectly unharmed – not even scratched – within frames that were bent like a flimsy wire hanger from the dry cleaner’s.

A few hours later, I headed to my optometrist with hopes that the frames could be fixed. While I was there, I did what people naturally do when they’re in a room surrounded by glasses frames: I checked out the glasses frames.

To my dismay, I found a pair that I really, really liked. The entire room, I lamented to Callaghan, is like the cash register lane where they stock things they know you’ll consider buying just because you’re stuck in line with nothing to do but look at them.

I do not need an additional pair of glasses. I just felt like I needed them. My replacement frames were on order (100% covered by the warranty), and I was still sitting there staring wistfully at the unnecessary glasses frames. Callaghan coaxed me away so we could leave. “Allez, allez! On y va!” He said as he walked away from me, leaving me no choice but to follow him. (Classic French husband move.)

So here’s what I’m thinking: I’ve been waiting for and wondering about and anticipating my well-earned mid-life crisis so much that now, every time I get a wild hair up my ass, I think, could this be it?

Maybe this glasses thing is my mid-life crisis, since it fits the cliché: I have this sudden, strong desire to blow a stupid amount of money on something I don’t need. (“Stupid amount of money on something I don’t need ” converted to U.S. currency = anything more than $25.00, maybe $30.00 if you include shipping and tax.)

If this is it, I’m disappointed. The object of my irrational desire should be something more mid-life-crisis-ish. If this isn’t it, then what will it be, and when? Will I reach the end of my natural lifespan and finally realize that I need a Maybach? I do tend to be a late bloomer.

Totally unrelated because I wanted to post a pic and didn’t know what and I wanted to share this small victory with you, anyway: I have a selfie I took yesterday evening when I came back from Body Combat, significant because it marks the first cardio I’ve done in while.

I mean, okay, it’d only been two weeks since my last Combat class, but it seemed longer. Yesterday was the first time in a long time I could get through class without feeling like it was an exercise in dragging myself through wet cement.

Probably not coincidentally, it was my first cardio workout since starting my new medication. It seems that my new treatment plan is working! Despite side effects, I felt much better in class yesterday, and not just because I held back a little on the hardcore. Before the new medication, each Combat class felt successively more impossible; the last one was a disaster.

 

(02 May 2018 – commemorating my first cardio class since the addition of my new medication! It seems to be working.)

 

This wraps up my eventful day yesterday. Here’s to a year with improved physical condition… and only one pair of glasses.

Medical first-world problem. (Ft. See’s)

My rheumatologist added a med to my treatment plan, and I’ve been having some side effects, mainly on-and-off dizziness and lightedness, muscle fatigue, and mild nausea. I’m also experiencing THIRST, which makes no sense when you guzzle water all day. I drink a glass of water and five minutes later I’m hit with a crazy pang of thirst like I need water NOW and if I don’t get water NOW I’m going to die, as if I hadn’t had water for hours. What else… my appetite is somewhat different. I crave sweet things (which I normally don’t) and salty things (which I normally do) while having no appetite.

If this is it for side effects, I said to myself after a week, then this is nothing. This is easy. I can handle this for a year!

Then Callaghan came home from work yesterday.

A client brought me a gift, he said. I’m giving it to you, he said. He opened his backpack and removed a bag I knew very well. My reaction at the sight of it was instantaneous and visceral. I backed away while yelling: “OH MY GOD NO!!! GET IT AWAY FROM ME!!!!”

As if the bag contained roaches, right? Plot twist: the bag contained a half-pound box of See’s Candies. Furthermore, since I tend to assume the worst when I’m down, I knew that the box would contain mixed nuts and chews, my favorites… AND IT DID. To this, my reaction was: “AAARGH NO I’M DOOMED.”

At least the worst of worst-case scenarios didn’t happen. There were no scotchmallows in the box. Our neighbors would not have to hear me screaming in the street.

Callaghan’s response: “Hahahahahaha!!!! But they’re your fav – ”

“No no no no no!! Thank you, but no.”

“You mean you’re not going to eat them? Haha!”

But he knew that I wouldn’t. I was starting to see the whole thing as a prank.

 

Why. Are these. In the house.

 

I’d lost my taste for sugary sweets ages ago, since I quit eating them. I don’t want to start eating them again. I wasn’t a sugar person in the first place, but there were a few sweets that I’d crave, and the number one thing on that short list was See’s Candies. The dark chocolate scotchmallows were my downfall, as some of you may remember.

So I’m alone in the house with the box of See’s Candies in the kitchen. No, they’re not vegan. This never mattered, because I’d eat them pretending that I didn’t know. My See’s Candies weakness was that bad. 

Since I quit eating sugar, I’ve had no problem avoiding it once it was out of my system. It’s been a non-issue. I don’t even “resist” sugary things. I just don’t want them. Now, THIS. And by the way… See’s Candies aside… it’s just weird to crave something without having an appetite. For me it is, anyway.

Truly, though, I’m very grateful. A lot of people suffer horrible side effects from the medication I’m taking, even at the low dose that I take, and I’m feeling mostly fine in comparison. This See’s Candies “problem” is a new one for me. It’s a medical first-world problem.

 

Getting personal: autoimmune disease. (Sjögren’s syndrome)

Though I’ve mentioned it in recent posts, my current medical situation has been a big enough part of my life that it warrants a post of its own, I guess, for anyone who might be interested. I’ve spent most of my adult life dealing with autoimmunity, working around various symptoms until receiving my diagnoses with Sjögren’s syndrome and autoimmune thyroiditis (hypothyroidism). I used to write about my Sjögren’s syndrome a lot. I haven’t written about it at length in years.

I felt fine when I left the country in 2011 and stopped taking my medication (hydroxichloroquine – Plaquenil, in my case), and I assumed that I was in remission. A few years later, I came back to the Land of AZ and went to my optometrist for a routine vision check. He informed me that as far as my eyes were concerned, I never went into remission. (Telling myself that I was in remission sure helped me to feel like I was in remission, though!)

Musculoskeletal symptoms started up again toward the end of 2016, along with worsening “brain fog.” I’d entered an autoimmune disease “flare,” and it left no room for denial. Weird things started to happen, as they do with autoimmunity. When the middle of one finger turned blue one night (“Idiopathic Blue Finger,” diagnosed the E.R. doctor – not Raynaud’s, which I also have), I returned to the rheumatologist, who put me back on hydroxichloroquine (again, Plaquenil). I shrugged my shoulders and pressed forward. I had a rough draft to finish! It was the thing that was causing my stress, but it had to get done.

Toward the end of 2017, my immune system went into overdrive again, even as I diligently took my daily dose of hydroxichloroquine.

2018’s been more difficult, yet. The last three months have revolved around some of the most painful attacks on my joints I can remember, some of it incapacitating. My agenda jammed up with medical appointments and testing of various sorts, as my rheumatologist wanted to rule out the development of other autoimmune disorders before deciding on our next course of action. Let me just say that my rheumatologist at the Phoenix V.A. has been the best I’ve ever had! She’s fantastic. Autoimmunity is something that can gather steam with time and generate additional disorders, so it’s good to re-check everything when things go awry.

Genetics likely play a role here, by the way, and I think I know the source of mine: when we met, my bio-mom told me that I physically take after my father’s mother’s family (the Ashcrofts, in England). I would love to meet them and find out who’s had what autoimmune disease. I’m assuming there’d be something to learn.

It’s pretty easy for me to dismiss my symptoms. I’ve had dry eyes for so long that I forget that it’s a part of my disease. A lot of people have dry eye syndrome without having Sjögren’s. It’s “my normal” to be unable to open my eyes in the morning until I put in artificial tears. (I might have stopped taking the hydroxichloroquine when I moved to France, but I’ve never stopped with the eye drops.) Since I push myself in the gym, it’s easy to assign blame to my workouts when I experience bouts of musculoskeletal pain. I focus when I work out. I don’t consider that I’m dealing with Sjögren’s symptoms. I don’t want to go there in my mind.

I don’t feel sick, for the most part. There’s a general malaise sometimes. My energy levels are mostly good, but fatigue sets in more quickly during my workouts now, and I can feel that it’s Sjögren’s-level fatigue. I have occasional abdominal pain and nausea. The brain fog has led me into some embarrassing conversational exchanges. All of this is minor enough.

Since 2016, my white blood cells have mainly attacked my joints and my eyes. My vision in my right eye has worsened slightly over the course of a year, and there’s more scarring on my corneas. My optometrist applied a temporary contact lens bandage to the cornea of my right eye (the more affected one, the one that hurts) and sent me to a corneal specialist.

My last musculoskeletal attack started at a party a week ago Saturday. In typical autoimmune fashion, it struck all of a sudden and out of nowhere. My left hand seized up with intense pain, starting at the large joints on the outside of the hand and radiating inward. For the rest of the night and into the next day, I couldn’t open or close that hand all the way. It swelled up a little bit and changed colors, and it felt like a mild constriction was happening. It was excruciating. Thankfully, the episode lasted less than 24 hours. Some of my recent attacks have lasted for almost two weeks.

I’m grateful that so far, Sjögren’s syndrome has left my internal organs alone.

Meanwhile, my plant-based lifestyle helps me to function at a physically high level with Sjögren’s syndrome.  I’m trying to keep processed foods to a minimum. I’m trying to get more sleep. I’m continuing to drink water all day long, including water spiked with organic, raw apple cider vinegar. I really believe in that stuff!

Now that my test results have come back, my rheumatologist is adding methotrexate to my hydroxichloroquine. On the alternative side and courtesy of my amazing parents, I’m also adding Manuka honey (Comvita brand, from New Zealand) and Ukon (tumeric) to my daily supplement cocktail. I’m hoping for the best, but expecting life to continue as it is, with good days (as in, I can go to the gym) and bad days (as in, I can’t go to the gym). No, it’s not all or nothing – there are days that are bad because I’m in pain, but I can still do something, so I go to work out and I do whatever I can.

I went to the gym this morning. I took this selfie about an hour ago, in the late afternoon. I’m still feeling fine.

 

Autoimmune, don’t care. Today is a good day.

 

With my new treatment plan, I hope to see the end of this flare. The attacks on my joints should stop. My head should clear up so I can remember things like, say, the first thing about a prominent politician, and that a person who’s ridden in my car on many an occasion does, indeed, know what my car looks like, and that a friend’s get-together was in April, not in March. About that last: I’ve never missed an occasion by a whole month before. It just happened, and it sucks, because the friend who invited me lives out of town, and it might be years before I can see her again… not to mention, I’d accepted her invitation. I accepted, and I didn’t show up, and I regret that very much.

That’s the story. I know that many of you also live with chronic illness. HUGS to you all. Let’s keeping fighting the good fight!

 

The silver lining of a bad day is the day after.

This has been a week. I’m sure you can all relate to this: there is no day as good as the day after a really bad day. The great thing about today is that yesterday was a day of epic fuckery such that today can only be better. For one thing, I was able to get to the gym this morning. I couldn’t go on Tuesday or yesterday, so you can bet that today’s workout made an immense difference.

For me, everything about working out makes everything better, even an aspect as simple as setting up whatever area I use. I took this pic weeks ago when a friend pointed out how I always organize my area, with my backpack and water bottle to the left:

 

Organized crime.

 

I took this picture jokingly, but it’s soothing to see it because I see habit, and habit can be a balm. It’s a way of feeling in control; in this case, it’s a healthy way.

This post comes from a place of gratitude. Yesterday is over. Today is a new day. I have yet another doctor’s appointment this afternoon (my third this week) – one of my medical specialists – but this is a good thing. Today’s doctor will be different, and I’m very optimistic that whatever he does, the experience will be the opposite of the one I had on Tuesday. I’m talking about ophthalmology, the only medical specialty not available at our V.A., by the way.

Yesterday, man. There was just something about it. Callaghan had a Very Bad Day yesterday, too, for reasons different than mine. It was awesome that we didn’t get into it despite our equally bad moods!

I’ll try to remember to repeat this mantra on future bad days: tomorrow is a new day. Some sayings make profound sense, and there’s nothing like experience to appreciate a tired old adage as something more than a tired old adage. Everyone is different. It’s good to hone in on adages that help get us through. For me, “things can always be worse” is a good reminder, but it isn’t as reassuring as “tomorrow is a new day.”

 

Back in the gym! (Autoimmune B.S. notwithstanding.)

Today, I feel the need to report that I went to the gym this morning. It felt momentous and amazing, even though I haven’t missed that much… I just missed last week Thursday and this week’s Tuesday and Wednesday. Today felt momentous even though I did what I could in the garage last week, and even though I did make it to the gym on Saturday. There are lulls in the doldrums of agony, and you can bet I’m racing to the gym when they occur!

It just felt like a long time. The thing is, as I was realizing this morning while talking to my BodyPump instructor, I have a lot of physical energy, so I feel like I’m literally jumping out of my skin when I’m grounded by stress-induced autoimmune flares such as the one I’ve been dealing with lately. My body is full of energy at the same time that it’s grounding me with joint pain. It’s like a librarian surrounding me with all the books I want to read, then setting a ring of fire between me and them so I can’t get to them. That would be a sadistic librarian. Autoimmunity makes for a sadistic body.

Maybe I’ll post more in-depth about my current autoimmune situation in a future blog post. Right now, I’m enjoying this almost-100% feeling. Things aren’t completely settled down yet; I have more appointments lined up, and lab-work pending review. I’m taking each day as it comes, doing what I can, when I can. I have a lot of writing catch-up to do, too, as a result of all of this.

I’m just so grateful for the V.A. hospital, which has been treating me very well, and for my rheumatologist there, who’s the best I’ve ever had.

And BodyPump this morning was awesome, as usual! I love seeing my people there as much as I love the workout!

 

So happy to be at the gym this morning! I took this before-workout locker-room selfie thinking “BodyPump in 15!!”

 

The rest of the week’s looking fabulous, too. Callaghan’s birthday is on Saturday, so there’ll be shenanegans of some sort in honor of that. He would love to know what’s involved. He’s not going to know until then. Heheh.

Happy Friday Eve, everyone!

“The Beast in the Belly.” (My favorite medical mystery.)

Have you ever read an essay or a magazine article that’s stayed with you?

24 years ago, a surgeon in New Haven, CT wrote a narrative essay about one of his patients, a young woman whose mysterious ailment led him to investigate a medical condition the likes of which he’d never seen before. His essay appeared as an article in the February 1995 issue of Discover Magazine, which I found lying on a table somewhere – probably in an office at ASU, as I was in college at the time.

I opened the magazine to the most interesting and horrifying medical story I’ve ever read. I say this without a shred of hyperbole.

Real-life mysteries fascinate me.

I’ve never forgotten this particular medical mystery; I’ve sought out the article several times in the 20+ years since. It’s the only magazine article I’ve wanted to re-read over and over, and it’s the only article whose title I’ve never forgotten. Granted, its title is somewhat sensational: “The Beast in the Belly.” Sensational, yet apt.

The first time I wanted to revisit the article, I had to go to the media library in the campus’ main library’s basement to hunt through the archived magazines. I Xerox’d the article so I wouldn’t have to repeat the effort in the future. I re-read the article several times over the passing years, and I also shared it with friends and family, like you do when your fascination borders on obsession. At some point, I lost my copy of the article, but by then we were far enough into the Digital Age that I was able to find the article online. (I remember how amazed I was at the idea of someone putting archived magazine articles on the internet!)

Perhaps the medical mystery in question may not be as much of a mystery today as it was 20+ years ago. It’d been mysterious enough back then, though, that this surgeon encountered it for the first time and learned about it as he frantically worked with a team to save the young woman’s life (which they did). Even if the ailment is less of a mystery now, it’s still rare in western countries, I believe.

The ailment is not common in western countries, and that is why this surgeon and his medical team in New Haven didn’t know what they were dealing with when this patient landed on their table with her guts rapidly necrotizing.

I’ll now leave you to read this essay – “The Beast in the Belly” – for yourselves, if you’re so inclined. (I spent the morning at the hospital, and this story occupied my thoughts while I was there, in case you were wondering why the medical mystery came back to mind this time.)

Grab the beverage of your choice and enjoy!