chronic illness

Open Letter from an Autoimmune Patient to Those Concerned About Her Vegan Diet.

That Asian-Looking Chick Leave a comment
Yours Truly on 07/17/2025. Hi.

Dear all who are concerned:

I have Sjögren’s Syndrome, a systemic autoimmune disease, and it’s with gratitude that I hear your doubts and qualms about the food that I eat. You’re worried about me. You’re worried that I’m possibly making myself sick, keeping myself sick, or making myself worse with my plant-based manner of fueling my body. I’m writing this letter in the hopes that it will ease your minds.

Instead of focusing on what’s wrong with me, focus on what’s right with me.

First, though, to review:

Between Sjögren’s Syndrome, itself, and the complications I’ve developed, I’m uncomfortable and in pain all of the time. I have a lung that’s structurally damaged and getting worse, and a stomach that’s 60% paralyzed. Sjögren’s arthritis and tendonitis leave my fingers, hands, and wrists painful and stiff; I currently can’t drive, hold a pen to write, or use my hands to push open a door.

First thing in the morning, because of my severe dry eye, I squint through one eye at a time as I feel around for the eye drops. Getting the drops into my eyes is difficult because it’s uncomfortable to keep my eyes open long enough to deposit the drops. (I often miss, re-squeeze the bottle, and end up with drops running down my face.) At the same time, my mouth, throat, and tongue are so dry, it’s an ordeal to swallow and to speak coherently. My finger joints are the worst when I wake up. I can’t close my hands into fists.

I push myself through my morning chore routine and declare victory when I can get the bed made before noon. Morning going-out plans require a self psych-out and a ride on a choppy wave of adrenaline. It helps if I’m excited about where I’m going. When I arrive, no one can tell that I battled to get there, and I relax onto the warm sands of another win.

A lot goes into the execution of an average day as I listen to my body and respect her limits. I know I’m going to be working out, and that I’ll need to show up for myself.

All of this said, I can’t feel too badly about my everyday trials and tribulations when I think of some of the things that I’m able to do, despite my chronic illness.

Examples:

–I can pull myself up in bed and swing my legs around using just my abdominal muscles. With my core strength, I can easily get up from a seated or lying down position without using my hands or other assistance. (Important because I can’t use my hands; they don’t flex backward, my wrists are weak, and the pain is a problem.)

–I can hold a 4+ minute plank on my knuckles. (Important for the same reason as parenthesized above.)

–I can walk five miles, up and down inclines at varying speeds, wearing a 12-lb weighted vest.

–I can work out nonstop for an hour doing LM Body Combat and Body Step classes, which incorporate HIIT cardio.

–I can run up and down stairs.

–I can lift weights. Using modifications where necessary to accommodate the disability in my wrists, I strength-train with weights at home, or on machines at Planet Fitness.

Amazing, isn’t it? Why focus on what’s wrong with me when I can yet do all of these things? Clearly, I’m doing something right.

I work out through the pain, and I get it done. These days, I work out six days a week. Regular exercise is highly encouraged by my doctors; it’s practically prescribed.

Imagine! I’m chronically ill with pain, discomfort, and a slew of medical challenges, yet I feel good in my body, and I’m fitter than many women my age (56) who aren’t sick. How can this be?

Food is medicine, and food is fuel. The food that I eat energizes my body even when I’m sleepy and tired. The energy in my body permits me to exercise consistently. What is this miracle food that allows me to maintain my fitness and a healthy weight in the face of my autoimmune encumbrances as a middle-aged woman in menopause with hypothyroidism and osteoporosis, to boot?

Plants.

I get my macronutrients (carbs, fats, and proteins, nutrients that we need in large quantities to ensure that our bodies function properly) and micronutrients (vitamins, minerals, trace minerals) from plants and plant-based foods. I’ve never been anemic or deficient in any vitamin or mineral.

Autoimmune disease is an inflammatory disease, and an anti-inflammatory diet is largely whole food, plant-based.

Rather than making me sick, plant-based eating makes it possible for me to enjoy a solid level of fitness despite my chronic illness, because I wouldn’t be able to do it if I didn’t feel this vitality in my veins. Rest assured that I am not making myself worse with my plant-based diet.

I’ve taken brief steps away from veganism over the years, for various reasons, so I know how much worse I feel when I do eat mammals, birds, fish, and dairy. It never went well. I experienced level 11 pain when Sjögren’s arthritis attacked both of my ankles in a bad flare. I couldn’t walk for two weeks. I was 25 years old.

Arthritis, rashes, bodily fatigue, and gastroparesis flares were just some of the additional issues I experienced. Every time, I returned to my plant-based diet, and I felt better. Even with my current problems, I feel better now than when I wasn’t vegan, because I have this awesome energy in my body. I always felt sluggish when I ate meat and animal products. For me, personally, there is no comparison.

It’s important to note that one autoimmune disease can lead to other AI diseases, and complications are always a lurking threat. Experts don’t know what causes autoimmunity in the first place; theories include genetics and environmental factors, but at this point, no one knows for sure.

What is known is that there are triggers that can interfere with the management of autoimmune conditions. For instance, stress can trigger flares, so minimizing stress as much as possible is always a goal. Foods that promote inflammation in the body should be avoided, while anti-inflammatory foods should be favored. Anti-inflammatory foods are plant foods such as fruit; veggies; whole grains; nuts; seeds; legumes (i.e. beans, lentils, and peanuts); and healthy fats found in certain plants and fish (i.e. olive and avocado oils, along with the omega-3 fatty acids found in flax seeds and fatty fish such as salmon, tuna, and sardines).

For research-based findings and information regarding the correlation between autoimmune diseases and whole food, plant-based diets (WFPB), I’m asking you to take the time to read this article published by the American College of Lifestyle Medicine: The Benefits of Plant-Based Nutrition: Treatment and Prevention of Autoimmune Disease. I’m providing the link here. The American College of Lifestyle Medicine is “A society of medical professionals united to reverse chronic disease,” and they provide a wellspring of information with research- and evidence-based educational pieces on this and various, related topics.

The Benefits of Plant-Based Nutrition: Treatment and Prevention of Autoimmune Disease

Though I do take pharmaceutical treatments for my disease, I consider my whole food, plant-based diet to be just as essential. I’m blessed to have the health that I have, but I also take some credit for my wellness. I’ll hang onto my vegan lifestyle, but thank you for your concern. I know that it comes from love.

I love you, too.

Spring 2025 and Charlotte the Lung.

That Asian-Looking Chick Leave a comment

Hello, friends. This evening I’m writing to you from my office cozy with its string lights and Hershey’s cushions and blankets all over the floor, cocooned and insulated from the shivering depths of our desert valley. We’ve been having a spring cold spell with temps in the 60’s all week. Today the high was a teeth-chattering 66 degrees F, and yesterday the high was 64, which to me is a crazy Arctic blast.

I didn’t mean to be delinquent here last week! I wanted to post, but I found that I couldn’t make a decision, so I ended up walking away from my laptop.

I’ve been going back and forth trying to decide whether to keep you apprised of medical updates and such. I figure you’ve been along with me for the ride so you may want to know what’s going on, but I wasn’t sure how much I wanted this blog to be about my health – there’s been a lot of that lately. However, I did go to the pulmonologist last week, so I have updates. I finally decided to go ahead and share these and future updates with you. I promise there’ll be more to this blog than medical stuff, though!

First, a quick look at the current situation of my swelling in the aftermath of gum-graft surgery. It’s coming along! That area of my jaw is still tender to the touch on both sides, but the swelling is gradually going down, just as I was told it would. “Gradual” is right.

Evening drive – dusk – sunset. [3/29/2025]

About Charlotte the Lung, then.

Charlotte’s latest CT scan (two weeks ago) looks worse than last year’s. My partial lung collapse (atelectasis) hasn’t changed, but “mild bronchiectasis” (April 2024) is now “traction bronchiectasis” likely due to fibrosis (scarring). The scan also shows “multifocal areas of endobronchial debris or mucous plugging,” which seems to be a product of Sjögren’s Syndrome. My pulmonologist believes that Sjögren’s is complicating matters for Charlotte.

My updated pulmonary function test shows changes for the worse in a couple of areas, as well.

Because of these results, I’m now on a different medication, and we’re going to repeat the CT scan and recheck my pulmonary function in six months. Doctor said that depending on those results, he might want to perform a second bronchoscopy, and also treat my lung infection. We’ve been taking a “wait and watch” approach to the infection, since it’s low-grade and the treatment is aggressive.

Despite these disappointing test results, I’m still incredibly grateful to have lungs that work, structural abnormalities aside. I can’t hike, swim, or sing the way I used to, but I can breathe. I don’t need oxygen!

Week after next I have an appointment with my neurologist, so that week’s post will include Agatha the Brain updates.

May this post find you doing well with your health and well-being, friends. Thank you so much for reading, for still being here. It means a lot.

Until next time!

Sjögren’s syndrome and Charlotte. (Also, July 23rd was World Sjögren’s Day!)

That Asian-Looking Chick Leave a comment

Hello there, friends. My bronchoscopy cytology and surgical pathology reports came back, and it seems that Charlotte, my right lung, is indeed experiencing complications of Sjögren’s syndrome, my autoimmune disease. This is more or less what was suspected. I’ll see my surgeon in person at my pulmonary appointment on Monday (I’ve only spoken with him on the phone); I suppose I’ll come away from that meeting with specifics.

One of my questions is did the event of aspirating the vitamin lead to this autoimmune involvement, or was the autoimmune involvement already in my lung when it happened? What is the correlation, exactly? Because all of this started when that vitamin got into my airway and landed in my lung. I have many questions, actually. I’ll come back here next week with the answers, for those of you following and interested in this situation!

Also, speaking of Sjögren’s, it so happened that the 23rd of this month (three days ago) was WORLD SJÖGREN’S DAY. Sjögren’s syndrome is a chronic, systemic autoimmune disease for which there is no cure, and it has its very own day in order to raise awareness and funding for research.

Of course I had to represent by wearing a Sjögren’s t-shirt. It garnered me some looks at the grocery store, but I didn’t get any direct inquires. Who’s to say that no one went and looked up “Sjögren’s” later, though? I’ve done that. I’ve gone home and Googled mysterious words on t-shirts. Bumper stickers, too. I can’t be the only curious person who learns things from messages others display on their persons and cars, now, can I?

I put on makeup, found a spot with good lighting, and took off my glasses for this pic in honor of World Sjögren’s Day. EFFORTS.

And here’s an everyday appearance one!

A better look at the shirt!

Sjögren’s Syndrome Warriors – NEVER Underestimate Our Strength.

Those of you dealing with chronic illnesses, especially ButYouDontLookSick illnesses, I see you. We are in this together.

Thank you so much for reading, as always, my friends. I hope you all have a splendiferous week ahead. Stay safe out there!

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

That Asian-Looking Chick 5 Comments

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!