Yesterday was my long-awaited rheumatology appointment. Such a high level of anticipation led up to this day. Since I had finally found a diagnosis of Sjogren’s Syndrome, all I needed was for it to be official. Then, I should be able to receive some medical help.
Nothing is ever as simple as it seems. After a thorough physical exam and about 100 questions, the doctor finally came in. And, guess what? My last doctor failed to send her the most important records. She only sent my older records, and didn’t send the new records that provided evidence of the diagnosis of Sjogrens. I was immediately angry and in disbelief. Then, I remembered how hatefully she had treated me. The tests would now have to be sent from the original doctor’s office.
My new doctor told me that she would have to see the records containing the latest blood work, the eye-doctor’s results, and the lip biopsy. After examining me, she thought if I had Sjogrens, it was a mild case. Well, of course! I knew it wasn’t a severe case. Then, she said that she thought I had more than one thing going on. Well, of course! I have numerous chronic illnesses that have symptoms overlapping.
She ordered physical therapy, dermatology, and more tests. Physical therapy sounds good. I can always benefit from that! Dermatology will be good to see my rashes again. It never helps unless they biopsy these rashes. I’ve been to two dermatologists, and they have different diagnosis’s. The only way to solve this is to have a biopsy that proves what the true problem is.
The 10 vials of blood were taken for the usual auto-immune diseases work-up. The x-rays were the tests that worried me. She had these done to check for signs of Sarcoidosis or ILD (Interstitial Lung Diseases). I would have never thought that these were a possibility. My family history of lung diseases prompted her to link up some of my symptoms with Sarcoidosis. Ugh!
Last night I felt angry and sort of in-shock. This appointment was far different than what I had hoped. Chronic Illness has continued to be like this for me. The always-evolving process of trying to get better is exhausting! This morning, I am not angry anymore. I feel down and worried, but there’s nothing now to do but wait. Waiting is a huge part of chronic illness (as I’ve written about many times).
Waiting now for test results leads me to my knees. Prayer for peace and physical relief continues here. The potential of very serious disease is always there for any of us. Now, it is definitely too close for comfort.
Disclaimer: I’m not a medical expert. This is only my personal experience. If you have a medical concern, please consult your personal physician.
@2018, copyright Lisa Ehrman