The Healing Chronicle – Volume 16

In late 2017 I was diagnosed with an autoimmune disease called Sjogren’s Syndrome. I remember sitting in a rheumatologist’s office having my blood test results explained to me, trying to absorb the new title being added to my medical chart. I honestly did not know how to feel.  For at least a decade prior to being tested for autoimmune diseases, I had received numerous diagnoses including poly-osteoarthritis, fibromyalgia, IBS-C, hypertension, asthma, and some sort of rash I still can’t pronounce when I get too much sun exposure.  I asked two different doctors if all these things could be connected, one of them finally ordered autoimmune tests to be done.

I now had a label and a systemic disease much like Lupus, and things started to make sense.  Everything in my body was affected, (joints, nerves, digestive organs, blood vessels, heart, lungs, and kidneys).  Even so, I kept feeling like something else was not right. Every issue caused by Sjogren’s is treated by a different specialist. I had a cardiologist, pulmonologist, dermatologist, gastroenterologist, and physical therapist.  At the time, I didn’t know what else to do except throw this disease on my back like a new backpack and try to keep living my life between appointments while carrying it around with me. When something would flare up, I would see the appropriate physician and treat each issue accordingly.  I learned to pay more attention to my body and take breaks when I needed to.  This backpack was a heavy load, but I had to wear it.

Eventually, I found a fairly good groove with my new Sjogren’s lifestyle. I knew what foods or activities may cause a flare up of some symptoms, and I had a better idea of how to read my body before I over did things.  I joined a Sjogren’s women’s support group, we are sister warriors together.  Then came covid, pneumonia, home hospital care, 2 months of shuffling around my house with an oxygen cord.  By God’s grace I survived it and was well enough to move our family from South Dakota to Iowa for my husband’s new job.

Then came the fun of finding a new Primary and a new Rheumatologist.   I was referred to the only Rheumatologist available in my area.  I felt like I was on my way back to being me, before covid, but then this Rheumatologist looked at me and said, “I’ve gone over your chart, you do not have Sjogren’s.”  After picking my jaw off the floor, I asked her why there was such a difference between what my last Rheumatologist saw and what she was seeing.  She simply stated that one of the Sjogren’s specific blood tests was negative. She shrugged her shoulders as if we were talking about the paint on the wall.  I was lost.

It took me weeks to sort through the emotions that came with my new “non-Sjogren’s” diagnosis.  Lots of prayers, talks with my sister warriors, and my family.  My doctor took the label away, but the backpack of symptoms was still snuggly on my back.  I almost felt like I “wanted” my diagnosis back.  Through research, I learned that almost 40% of people who have Sjogren’s test negative with some of the bloodwork. The most definitive way to come to a proper diagnosis was to do a biopsy of salivary glands.  When I asked about it, she informed me that doing the biopsy wouldn’t change the treatment so there was no need.  I felt differently, every part of my treatment plan and medication choices was based on Sjogren’s diagnosis.  After 2 years of going back and forth with follow-up lab work, nothing changed. Her advice remained the same, “If I lost a bit of weight and got more exercise, I’d feel better.”

So off to Mayo I went.

I ended up with an entire team of health care professionals and specialists. They listened and they heard.  A biopsy of my salivary glands proved that I indeed had Sjogren’s Syndrome. I also found out that I had something called Central Sensitization, alongside Fibromyalgia, and Arthritis.   My team made sure that I had resources for learning all the ways I can take care of my body and mind better. They also put a report together that I could take back to my Rheumatologist.  Rather than looking for another Rheumatologist, I went back, and together reviewed everything I learned at Mayo. I wanted to be angry at her reluctance to do the biopsy, and for not listening to me, but I also hoped we could have a good patient/doctor conversation.  I prayed that she would listen and look at me differently than before.  She did.  She is still my Rheumatologist.  

I have learned that I can and should advocate for myself. I have also learned that with a bit of balance, I may still have to lug that Sjogren’s backpack around, but I manage it better than before.  It is a lot lighter now.