Okay, deep breath. For starters I totally expected today to go differently. After receiving a phone call from the ENT (Ear, Nose, Throat Doctor) I knew only that my lip biopsy results were negative. There were no numbers, no percentages, nothing…just negative.
While in the office this morning the ENT Doc verified the results and said I healed very quickly from the lip biopsy. All was going as well as he could have hoped. I asked a few questions about previous oral ulcers as well as a past ranula and his thoughts on how they would have tied into Sjögren’s Syndrome (SS). He basically said, “Yes, they are all symptoms and yes, those with SS certainly could experience periods of flare ups and inactivity. It is a great question you are asking and be sure to ask your Rheumatologist about that.”
Two hours later, I sat in my Rheumatologist’s office expecting to hear the same news – a total waste of a $30 copay to find out what I already knew. In fact, at the time of my appointment I was feeling the best I had in a long time. I had no rashes to report, no body aches, no headaches – NOTHING. The most I could conceivably complain about was an ache in my hips and a couple bug bites. No big deal.
When he ran through his initial questioning he seemed taken a back by my lack of symptoms. I simply told him I was having a good day. He continued to ask about the face/neck rash from our previous appointment and how well the prescribed steroid treatment worked. I noted after the face and neck rash had healed, I ended up with the rash on my legs and arms, but that too was healing. As I began to explain my assumption of “lingering bug bite inflammation” he essentially cut me off by saying, “I think you are allergic to the sun.”
Now, mind you, I’ve heard this before in jest. Being a fair skinned blonde, one tends to hear all sorts of jokes pertaining to a lack of anything remotely considered a tan. But, Doc was straight faced, serious. Yes, I’m sun sensitive and burn easily…but according to his medical knowledge this was partly due to having a sun allergy. Stunning diagnosis #1.
As he continued to click through my digital medical file, he confirmed that I indeed had Sjogren’s Syndrome. He probably saw my jaw hit the floor, right before I picked it up and asked about the lip biopsy stating otherwise. That was when he explained his suspicions. Enter…stunning diagnosis #2.
While this particular lip biopsy requires 3 things (I’m assuming an inflammatory cell count) to be present for a positive result, I still had 1 detected. Combined with the positive ANA, SSA/Ro serology and many of my accompanying symptoms this lead him to believe I may be in the beginning, mild stages of the auto immune disease, Sjögren’s.
While symptoms typically decrease over the winter months, he didn’t foresee any immediate issues. He gave me two choices. I could go on a low dose medication to regulate my immune system OR I could be monitored. Frankly, I was stunned. I had expected to be written off until the next big flare – I even had my questionnaire & speech prepared!
So, as I sat there, stunned…I asked different questions. How do we monitor? Will this likely be progressive? Do we do regular blood testing? What is the plan? I knew I could deal with the dry eyes, dry mouth, some of the body aches and fatigue on my own.
The answers? Yes, we will have frequent blood testing, another visit in 6 months to review further serology results and any symptoms I may be having. Sjögren’s is likely to become progressive for me and the goal is to keep it from involving more organ systems. He threw out the importance of hydration, both internal and external. Meticulous hygiene to avoid infection of any susceptible areas generally cleaned by mucus. That means my eyes, nose, sinuses, unmentionables…everything. I also had to pay close attention to any lymph swelling in the armpits, groin and neck – as SS patients are more susceptible to lymphomas and associated cancer. Oh joy.
Furthermore, I now needed to protect myself in the sun. As if my sun hat, full sleeves, long pants and sunscreen weren’t enough. Evidentially they aren’t. I suspect he expects me to become a hermit and supplement my Vitamin D orally.
So, my marching orders came with a handy pamphlet and an appointment for a 6 month followup. How could my day have started so positive, yet ended ….well, (Sjögren’s) positive? It’s the nature of the disease my friends, the pure and utterly unpredictable nature of auto immune disease.
For now, all I can do is wait. Eat right. Reduce stress. Stay out of the sun. Invest in eye drops, mouth wash, lotions, ibuprofen and a good tongue scraper. And, I almost forgot, a new nasal rinse bottle, foot pumice stone and research a bit more on the use of CBD Oil & Sjögren’s pain/fatigue.
For now, I have to say I’m thankful. Thankful that I will have regularly scheduled appointments to monitor the disease and it’s effects on my body. So many people spend years waiting for a diagnosis and feel miserable without much of a cause to relate it to. So……it’s official! I have not lost my marbles!! I’m simply a woman who has Sjögren’s.
And look…my first purchase to assist with dry mouth!