One Week


So it was one week ago that I was told I have an autoimmune disease called Sjögren’s Syndrome. What is that? Well, like all autoimmune diseases, it means my body is attacking itself.

I guess something had to slow me down 😉

Seriously though, autoimmune diseases commonly feature symptoms like chronic fatigue. My particular one also comes with joint pain and a high amount of dryness all over the body. The glands that produce saliva, tears, vaginal lubrication, etc are attacked. Eyes get so dry vision is affected and they hurt. Mouth is so dry that things with any bit of acid in them, sting or cause sores. Breathing can be difficult because the internal organs like lungs get dry inside too, causing symptoms of asthma. I don’t know why the skin is dry too. Perhaps sweat glands? I need to read more about it.

People with autoimmune diseases are also hyper-sensitive to chemical toxins. Interestingly, doctors say that all autoimmune diseases have triggers. Often an environmental toxin or allergen. We all carry things like this in our genes. Many go through life without it ever being activated. But if it can be activated, I believe it can be deactivated too. One just needs to figure out what triggered it.

Sounds easy, in theory.

For me, perhaps it’s not as difficult to figure out as some as I have a touch of hyperthymesia. What’s that? I have this ability to remember things that have happened to me in greater detail than most individuals. For example, when I was 3 years old I recall, in great detail, my fall into my best friend’s pool. We had finished swimming, if you could call being in a floatation device (Remember those green fisher price turtle floaters?), swimming. I remember yearning for a bucket of water. I’ve always been the kid that has no fear going after what she wants, so I got down on my knees and tried to dunk the bucket in the water. I thought I should maybe not be doing it on my knees just before I fell in. There was really no hope to do it myself as the pool’s lip was much lower than the deck. I remember the feel of the water on my skin. I remember feeling so free in just my bathing suit. I remember hearing the adults freaking out, while I felt pure bliss and calm underneath the water’s surface. Then my brother plunged into the water to save me, they wrapped me in a towel, they figured out what I was trying to do, and gave me my bucket of water.

What else do I remember from a young age?

I didn’t have allergies to anything until we moved to the house with the pool. I started having bloody noses regularly that year. One was so severe they almost brought me to the hospital. That happened right after jumping into the pool. I also became allergic to nearly everything that pollinates and cats. Prior to that, we had a pet cat and I never had trouble with it.

What’s my theory? Chlorine.

Now, I also have Narcolepsy, but it’s in remission. My theory on that? I’ve always been sensitive to chemicals. During the years when my Narcolepsy was active, I was constantly surrounded by building materials (paint, drywall, insulation, adhesives, etc). I also drank a lot of alcohol then and was in a stressful situation at home and work. Now that none of that is in my life, the narcolepsy is inactive.

Right now, my treatment is a drug called Plaquenil. This drug is anti-inflammatory and anti-malarial. Its job is to calm my immune system down. So far, it has reduced my joint pain. My tendons seem to have no pain now. Long-term, it might not be the best thing for me as its generic name is hydrochloroquine, which means it likely has chlorine in it. That could explain why I’m more tired than usual on it. Oh hey, my neck is less sore too.

Some of my other symptoms have lessened too though. When one has rampant inflammation all over the body, irritability and outbursts/tantrums are hard to control. This has lessened and except for some frustration wrapping Christmas gifts, I’ve been more level-headed and in control of my emotions. Sorry if I snapped at anyone in recent years. I tried REALLY hard not to.

Another thing about this? I can weep without tears. When that started happening I literally wondered if I was too broken to cry properly. Yeah weird ideas like that go through your head when you don’t know what’s wrong.

I also finally know why sometimes sex is great for me and other times it just hurts. It’s not necessarily his lack of experience. Sometimes there just isn’t enough lube in the world.

What I’ve learned so far?

  1. I’m terrible at putting eyedrops in my eyes. Figures I would need to do this multiple times every day. Going to buy a thing that helps with that.
  2. People rarely die from this particular autoimmune disorder, but their quality of life is reduced.
  3. I am at a higher risk of lymphoma (44 times higher than healthy people). Lymphoma is a white blood cell Cancer. I’ve only found two things that help reduce this risk: Green tea (ugh caffeine when you’re already overly dry) and Cannabis.
  4. Shower filters are wonderful inventions. Not only do I feel cleaner, I’m not so itchy.
  5. Nipple cream (lanolin) is lovely on the lips.
  6. I wash my hair every second day already, but I should be having a shorter shower where I only was the necessary spots, so I don’t dry out the rest of my skin, every second day also.
  7. Lack of saliva causes tooth decay. Combine that with sugars and acids and you’re in bad shape. Need to brush at lunch time at work now.
  8. There are two kinds of tears. Ones that maintain the moisture in the eye and ones that are for emergencies (something goes in your eye, you’re emotionally upset).
  9. Eyes can be so dry you don’t know they’re dry, like a baby that’s unable to sleep because they’re so tired.
  10. There’s a ton I don’t know yet.

Anyway, I’m off to the folks for Christmas tomorrow.

A few more groceries and car packing ahead of me. Not sure I have spoons left for this…

Ciao,
R~

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