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!

 

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5 thoughts on “Getting personal: autoimmune disease. (Sjögren’s syndrome)

  1. Thank you so much for sharing. I have two autoimmune diseases, Hashi-Motos and Undifferentiated Connective Tissue Disorder. Each person’s journey is certainly unique to them, but the constant fight with your body mixed with a sense of acceptance and denial (depending on the moment) of your health. . . it’s a journey. It helps a lot to hear others who “get it.”

    Liked by 1 person

  2. You worded it perfectly, from “a constant fight” to the end. That’s exactly it. I’m sorry that you have to deal with Hashimoto’s and UCTD… and likewise, I appreciate connecting with others who share the struggle.

    Liked by 1 person

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