Thursday, July 7, 2022

Living Life with a Chronic Autoimmune Disease

Autoimmune diseases are a discouraging pain in the butt! Especially when you have a rare one nobody has ever heard of before. And when the treatment makes you feel worse than the actual disease. I've been dealing with one for the past few months, so I thought I'd post about it here so you'd know what's been going on in my world.


In 2000, I was diagnosed with Birdshot Chorioretinopathy (also known as Birdshot Uveitis), a very rare autoimmune disease of the eyes. According to the National Institutes of Health, it is estimated that less than 300 to 3000 people may have this disease in the U.S. My immune system attacks and inflames the cells in the back of my eyes. No one knows what causes this. I have the HLA-A29 genetic marker, which I guess makes me a great candidate for this disease. If not treated, I would eventually lose my sight.

Not the kind of news a writer wants to hear. 

At the time, I lived near Boston and was able to see a doctor who was a leading expert in the disease. I didn't lose any vision and was declared in remission in 2009—after nine years on immunosuppressant medications.

A couple of months ago, I noticed my vision getting worse. The floaters were back in force like someone sprinkled black pepper in my eyes. I had areas of sparkling lights and just wasn't seeing as well in general. My ophthalmologist in Topeka sent me to a retinal specialist who confirmed the Birdshot had returned. Sigh.
 
Photo credit: Birdshot Uveitis Society

This photo gives you an idea of what Birdshot does to my vision, but I'm not as bad as that. On 5/10, I started on 60 mg of prednisone daily for two weeks. I then went down to 40 mg for a month, then 30 mg for three weeks. Yesterday I dropped to 20 mg daily. The prednisone has helped decrease the inflammation in my eyes (yay!), and I'm seeing a bit better.

On June 3rd, I started on methotrexate. This immune suppressant medication was once used to treat some forms of cancer. To treat autoimmune diseases, you take it once a week. Even so, it packs a punch on your immune system and the body overall. The prednisone decreases inflammation immediately, and the methotrexate's job is to get my immune system to knock it off and stop attacking my eyes.

While my vision has improved, these meds are doing a number on my body overall. I'm constantly fatigued, often queasy, not much appetite, and puffy from the prednisone. Yogurt and tea are my friends! I cut out sweet treats and watch my sodium intake because prednisone can increase blood sugar levels and high blood pressure. I'm eating lots of fruit, veg, whole grains, proteins, and healthy fats, so my body is fueled well to balance the harsh meds. I also take a boatload of supplements—calcium, D3, B12, magnesium, turmeric, probiotics, and a prescription folic acid. 


I'm discouraged to be going through this again. Being a writer, you can imagine my stress about losing my sight. Not to mention the physical and financial hardships a chronic illness can impart. And finding doctors who know this rare disease and how to treat it. 

I keep reading these verses from Paul's letter to the Philippians: "Do not worry about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." (Philippians 4:6-7)


Any prayers and good wishes you would like to put out into the universe will be greatly appreciated. 

If you want to learn more about Birdshot Uveitis, check out this link. 

Hey, thanks for reading! If you've enjoyed my posts or tried one of my recipes, you can support my writing efforts through Buy Me a Coffee...or tea...or flavored fizzy water. Your donation will be greatly appreciated, especially now as I deal with a chronic autoimmune disease that flared back up again. The button is located on the right-hand side of this page. If you can't, that's okay, too. Either way, thank you so much for reading my stuff!  

8 comments:

  1. Always in my prayers, friend. Always… ❤️

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  2. Am thinking of you and sending healing vibes your way~~~~

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  3. I can’t reply to your post on the Birdshot FB page. But thank you for sharing your story and scripture. I will pray for you. God has a plan for us both, and I pray that we both can trust Him in the process. With love.

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    1. Thanks so much! God will show the way forward as long as we are paying attention.

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  4. I am sorry this returned. My thoughts and prayers are with you, friend. You are a very strong, Godly woman. Take life one day and challenge at a time. Never forget, the Good Lord will ride that roller coaster with you. No doubt! Love you to pieces. Will see you soon.
    Lisa

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