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!

 

Typical Food.

Several friends have been asking me what I typically eat, and I find it difficult to answer on the spot, because, I guess, I don’t put all that much thought into food… so the last time I was asked, I decided to do a food journal over the next two days, which happened to be Sunday and Monday (yesterday). The timing was great for the experiment because my documentation captured a weekend day and a weekday that also happened to be a gym day. It covers a pretty good idea of the average food picture in my life. I’m sharing the results here this morning, for anyone who may be curious.

Since this was a spontaneous decision, I didn’t premeditate it or go shopping for it or anything. That’s my excuse for not exhibiting dishes prepared from scratch. Some weekends, I cook food to feed us for a few days, if not for the week, and some weekends, I don’t… and this last weekend, I didn’t.

Here are a few generalities:

1). Water is key to starting my day right. First thing in the morning, I drink three big glasses of chilled water, and I continue drinking water all day long. I have a little idiosyncrasy about water: I prefer very cold water, except I like to drink room-temperature water when I’m eating.

Water is the only thing I drink besides coffee and the occasional cup of tea or iced tea. (I stopped drinking grapefruit juice last year… I used to have it with breakfast.) I’ll sometimes squeeze fresh lemon juice into my water when I’m at home. I’m hyper-vigilant about keeping myself hydrated – I also drink a big glass of water right before going to sleep. I’m just really into water. Fun fact!

2). You’ll notice a lot of carbs on both days, since that’s my favorite food group. I prefer complex carbs and actually avoid simple carbs (white bread, white pasta, white rice, white potatoes, refined sugar, and alcohol… I think my last glass of wine was back in either October or November). (Oh wait, did I have champagne with my in-laws when they were here visiting from France for New Year’s? Yes, I believe did! December 31 was the last time I drank alcohol, then.)

3). I’m in the habit of waiting until 9:00am to eat breakfast, even though my alarm goes off at 5:00-5:30am in the morning five days a week. I get up and drink the three glasses of water with my thyroid medication, and then I wait 30 minutes before consuming anything else, because that’s how thyroid medication works. (I have Hashimoto’s disease – hypothyroidism. In my case, it’s autoimmune thyroiditis.) When the 30 minutes has passed, I take my other morning meds, and I have my first of two mugs of coffee.

4). I take supplements twice a day (different ones with my morning and evening meals).

5). I tend to cycle through certain foods. For instance, for a few weeks recently, I was having a Trader Joe’s blueberry-bran muffin for breakfast every weekday. Then I moved on to waffles and berries. I change it up every two to three weeks.

6). While there’s almost always some overlap in the things we eat (like salads, guacamole, fruit, etc.), Callaghan and I eat different meals about half of the time, I’d say. He’ll incorporate non-vegan elements into his.

7). Have I mentioned that as of about a month and a half ago, I’m back to 100% vegan, 100% of the time? It feels good. I’m my old self again.

So all that said, let’s jump in! Here’s what I ate over the last two days:

Sunday

Breakfast: Bear Naked Honey Almond Granola (10g protein!) with plain, unsweetened almond milk, blueberries and raspberries; coffee with stevia and the same almond milk; whole wheat toast with Earth Balance buttery spread.

 

Granola with a generous topping of fresh berries and almond milk, and whole wheat toast - and Sumatra coffee, of course (my favorite)!

Granola with a generous topping of fresh berries and almond milk, and whole wheat toast – and Sumatra coffee, of course (my favorite)!

 

Lunch: Sandwich with vegan lunch slices in turkey and ham flavor with fresh spinach, Roma tomato, Dijon mustard (that Callaghan brought back from France!) and grapeseed-oil Veganaise on whole wheat bread; a nectarine.

 

I usually default to sandwiches for lunch, which is fine, because I love them. I usually have fruit, too.

I usually default to sandwiches for lunch, which is fine, because I love them. I usually have fruit, too.

 

Snack: Kind Healthy Grains Maple Quinoa Clusters with Chia Seeds (1/3 cup), dry.

 

A handful of dry granola for a crunchy, sweet afternoon snack - one of my favorites! This is Kind Healthy Grains Maple Quinoa Clusters with Chia Seeds. YUM.

A handful of dry granola for a crunchy, sweet afternoon snack – one of my favorites! This is Kind Healthy Grains Maple Quinoa Clusters with Chia Seeds. YUM.

 

Dinner: Black beans and brown rice with HOT salsa; sliced avocado; a side salad of mixed baby spring greens and tomato with olive oil, balsamic vinegar, sea salt, coarsely ground black pepper and oregano.

 

This was a quick and easy dinner of brown rice, black beans, salsa, and avocado, with a salad on the side.

This was a quick and easy dinner of brown rice, black beans, salsa, and avocado, with a salad on the side.

 

Dessert: Justin’s organic dark chocolate peanut butter cups.

 

Justin's organic dark chocolate peanut butter cups are my favorite vegan treat!

Justin’s organic dark chocolate peanut butter cups are my favorite vegan treat!

 

Monday

(The standard two mugs of coffee with stevia and plain, unsweetened almond milk)

Breakfast: Two of Van’s Multigrain 8 Whole Grains waffles with Earth Balance buttery spread; blueberries and raspberries.

 

I toast and "butter" (it's Earth Balance) the waffles at home and bring them to work loosely wrapped in foil. Van’s Multigrain 8 Whole Grains waffles, blueberries and raspberries.

I toast and “butter” (it’s Earth Balance) the waffles at home and bring them to work loosely wrapped in foil. Van’s Multigrain 8 Whole Grains waffles, blueberries and raspberries.

 

Lunch: Sandwich with Trader Joe’s Mediterranean hummus, fresh spinach and Roma tomato on whole wheat bread; a nectarine.

(On gym days, I’ll usually have peanut butter and jelly for lunch, but lately I’ve been alternating with hummus for the savory goodness of it. It’s still a great high protein/healthy fat sandwich spread.)

 

I ate lunch at my desk yesterday: Sandwich with Trader Joe’s Mediterranean hummus, fresh spinach and Roma tomato on whole wheat bread... and a heavenly nectarine for dessert!

I ate lunch at my desk yesterday: Sandwich with Trader Joe’s Mediterranean hummus, fresh spinach and Roma tomato on whole wheat bread… and a heavenly nectarine for dessert!

 

Snack: Small handful of roasted, unsalted almonds; a mini chocolate chip Clif bar.

(Workout fuel! I like a combination of protein, healthy fats, carbs, and a little unrefined sugar an hour or two before going to Body Combat.)

 

A small handful of roasted, unsalted almonds and a mini chocolate chip Clif bar fueled my workout after work. That mini Clif bar is so tiny! It's exactly the right size.

A small handful of roasted, unsalted almonds and a mini chocolate chip Clif bar fueled my workout after work. That mini Clif bar is so tiny! It’s exactly the right size.

 

Dinner: Homemade guacamole and an Amy’s Sonoma veggie burger (organic vegetables, quinoa and walnuts) on whole wheat toast; side salad of spinach, mixed baby spring greens and tomato with olive oil, balsamic vinegar, sea salt, coarsely ground black pepper and oregano.

(Post-workout delicious combination of complex carbs, plant-based protein and healthy fats.)

 

Callaghan made his guacamole to go with our dinner, and it was fabulous, as usual! Homemade guacamole and an Amy’s Sonoma veggie burger on whole wheat toast, plus a side salad.

Callaghan made his guacamole to go with our dinner, and it was fabulous, as usual! Homemade guacamole and an Amy’s Sonoma veggie burger on whole wheat toast, plus a side salad.

 

Dessert: Fresh strawberries.

 

Fresh strawberries for dessert.

Fresh strawberries for dessert.

 

The strawberries look kind of weird in the picture, somehow, but they were wonderful.

Not pictured: I had a cup of Celestial Seasoning’s Honey Vanilla Chamomile tea last night before bed. It’s my favorite nighttime tea.

Et voilà! Two typical days.

My favorite thing to eat besides carbs is seasonal produce. The nectarines are fantastic right now. You know they’re a June favorite!

“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.