FLARE!

I am recovering from an autoimmune flare. I have tried to understand what triggered this flare. The answers seem to be (1) allowing my stress bucket to overflow, (2) skipping my hydroxychloroquine, and (3) reintroducing red pepper flakes into my diet.

The dietary changes are easy to explain. After eight months working on the elimination phase of the Autoimmune Protocol (AIP), I decided to eat red pepper flakes. It was a simple recipe: garlic and red pepper flakes with spinach sautéed in olive oil. My body’s response to the dried red pepper flakes was swift and dramatic.

Soon after the meal my entire mouth was aflame. My digestive system expelled the meal with force. The pain shooting into my head was so intense that my sense of balance deserted me. While rushing to the bathroom, I slipped and fell. I landed so that my left knee, the one with the broken pieces of circlage wire, was reminded that under a thin layer of carpet there is a concrete subfloor. The toes on my left foot were bent in a direction that was more than uncomfortable and two of them were sprained.

The painfully inflamed tissues of my lips and mouth and the headache were soon joined by swollen tonsils, muscle aches and pains, and fatigue. As I focused on how to feed myself. I used the pressure cooking setting on my instant pot to make bone broth. I used my Vitamix to make smoothies and soups. It finally dawned on me that this was an autoimmune flare, probably Sjogrens Syndrome. This was followed by days in which my major activities were directed at moisturizing my eyes, mouth, and throat.

I have plenty of eye drops and gels. I tried several mouth moisturizers. Sugarless gum did help with the production of saliva. The most healing balm was vitamin E. I punctured the capsules and applied the contents directly to lips and gums. When I was focused on my own food and healing that left plenty of time to think about other autoimmune flare triggers.

My new ophthalmologist had given specific instructions for dealing with the dryness in my eyes. She had also left me with a fear of hydroxychloroquine toxicity. I am at risk for the irreversible damage because I have been taking the medication off and on for the past 30 years. The baseline test was inconclusive and I have an appointment with the retinal specialist in November. At some point after the baseline test, I made an unconscious decision to stop taking the medication. In retrospect that was probably not a very good idea.

Having to deal with an autoimmune flare and decisions about medication forced me to deal with my need for a new rheumatologist. I like the one I have but he has moved his office to Colonial Heights and I hate driving on I95. He is also not an Anthem participating provider. So, I must pay what Medicare will not. Since it looks like I may be needing a rheumatologist more often, I have made an appointment with one at VCU Health. The idea of dealing with a new rheumatologist is almost as stressful as the idea of retinal damage.

I was spending long hours working and studying online. I had my first new batch of nutrition consultation clients in three years and I was highly motivated to provide high quality services while meeting all contractual obligations. I was engaging in professional development by taking a course on the human gut microbiome. I was working diligently on DNA genealogy and family history.

I was also working on my physical rehabilitation. I was taking 30 minute walks early in the morning and had also started physical therapy in the pool to help alleviate the pain from the arthritis in my hip. My physical and mental resources were spread very thin.

Then there were unexpected deposits in my stress bucket. Do I really need to say more than DMV? The bureaucracy made an error and I had to jump through hoops to not be fined for it. How about while I was standing in line at DMV, ADT called to say that my alarm was going off. The air conditioning stopped working. The compressor was frozen. When it defrosted there was a pool of water between that concrete subfloor and the carpet that is not yet completely dry. The heating elements in the oven died.

In other words, life just kept marching on while I needed to understand the two additional deposits that the ophthalmologist made into my stress bucket. While I may or may not have retinal damage from hydroxychloroquine, I definitely have two degenerative eye conditions. The diagnosis for the right eye is posterior vitreous detachment (PVD). The diagnosis for the left eye is asteroid hyalosis.

I now understand that PVD simply means that I am myopic, aging, and have already had cataract surgery. There is no treatment for the condition. If I experience an increased number of floaters or a curtain, that should be treated as an emergency. The asteroid hyalosis is not expected to cause any problems with my vision.

Unfortunately, these degenerative conditions which are considered to be relatively benign are interacting with preexisting conditions in ways that I find extremely uncomfortable. I am not blind. I am not going blind. I am extremely sensitive to glare, the kind of glare that comes from the screens of computing devices. After an hour or so my head starts to hurt badly and does not stop. The pain is severe enough that it interferes with my ability to use my brain to work, to study, and to manage musculoskeletal pain.

I have tried various types of filters on my devices. None of them alleviate the problem. I have worked with my optician to try various types of antiglare and light sensitive lenses. They also fail to solve the problem.

The bottom line is that if I want to reduce the frequency and intensity of the headaches, I must change my computer related behavior. As I have come to terms with the need to change my behavior, to drastically reduce my screen time, the level of stress in my bucket has been greatly reduced and the autoimmune flare has abated. Now, I must set some priorities.

There are people I love who fare better with me alive. You know how it works on planes. When the cabin pressure falls and the oxygen mask drops, the responsible adult raises their oxygen levels first. I am still a responsible adult. Whatever has distracted me from saving my own life first needs be removed from my agenda. As in “Girl, Bye.”

 

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