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.

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!

 

“Gargarisms.” Just Try to Deny the Awesomeness of that Word.

The other day, Callaghan got up from the couch and announced, “It’s time to do your gargarisms!”

It was one of those moments I had to just sit and mull over his words for a few seconds. (It happens every once in a while.) Then I realized that he’d gone to the kitchen and taken a glass from the cabinet, and he was standing in the half-moon light of the open refrigerator door, pouring carbonated water into the glass, and it hit me: he was saying that it was time to gargle.

Context is a wonderful, helpful thing.

“Un gargarisme,” Callaghan explained over my burst of hilarity, “is how you say it in French.” But he was cracking up, too, as usual.

That was our first good laugh of the week. Gargarisms! I had to do my gargarisms, yes. And that is a brilliant new word, I thought.

The greatest part of the story, though, is that when I went online to look up “gargarism” (thinking that someone else might have found it funny to twist the verb “to gargle” into a noun), I discovered that it actually exists!

 

 

Gargarism(wiktionary.org)

 

The noun is classified as “obsolete,” but it’s legit nonetheless. I’d learned a new word! Two new words, in fact, since I learned both the English and the French versions.

Anyway, I started doing the gargarisms with soda water this week at the suggestion of a medical website in an attempt to get my throat to stop attacking itself,* as it’s been stuck in a cycle of producing mucus as a response to nothing at all, causing me to have to clear my throat all the time. I mean, ALL. THE. TIME. This started back in December, almost a year ago, so I’m really kind of over it at this point. The V.A. is sending me to speech therapy, because sometimes that can help. Pending that, pass the club soda so I can do my gargarisms. (I cannot get enough of that word. GARGARISMS!)

 

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*I have autoimmunity, which means that my body habitually goes on sprees of attacking itself (meaning, me). It does this at random and as a response to stress and sometimes for no reason at all. Some of my problems are chronic (Autoimmune Thyroiditis, aka Hashimoto’s Disease; Reynaud’s Phenomenon). One is chronic and currently in remission (Sjögren’s Syndrome). I’m on the appropriate meds, and things are being managed just fine… except for the thyroid disease, which has recently decided to overstep the bounds of its medication. We will be having none of that! A batch of increased Synthroid prescription is in the mail as we speak, so hopefully I’ll feel less tired once I switch to the higher dosage.