I literally got the call on my 30th birthday.
Doctor: “Do you have dry eyes and dry mouth?”
Me: “Huh? Whhha Whhhat? Um, no… I don’t think so…”
Doctor: “Well, have you heard of Sjogren’s Syndrome before”?
Me: “No. Why? What is that?”
Sjögren’s Disease is hard to diagnose. Heck, we are JUST NOW starting to see it called “Sjögren’s Disease” instead of “Sjögren’s Syndrome“. Finally! It’s very much a full body autoimmune connective tissue disease, but how do you get diagnosed?
My journey to diagnosis started 8 years ago. I was going through a very stressful period in my life. I was 29 years old, getting out of a long-term relationship, re-establishing my life, trying to buy a home during the real estate crash of 2008, and trying to put myself through college. Actually at this time I was finishing my Nurse Practitioner training. I was in the overwhelmingly stressful position of taking my boards and finding a new job in the midst of everything else.
I felt like I was just “existing,” not living! I became fatigued and underweight. I remember my family urging me to see my medical doctor, but I didn’t have time for that! I could not even think straight or focus. It’s so hard for me to remember the details of this time in my life because I was so truly just trying to survive. I had muscle aches & pains, bone pain, overwhelming death fatigue (well, that’s how it feels…), neuropathies, anxiety, you name it! I attributed it to stress but did eventually get some lab work done.
The most notable thing on my lab results was a low white blood cell count. My doctor was astute enough to then run an ANA panel. This was positive and further antibody testing was indicative of Sjögren’s.
And so it started… I was already overwhelmed. I didn’t have time for a new mystery diagnosis or being sick. I “decided” to live in denial for a while. For years actually… Denial is a coping mechanism and its what I needed to do to push through. I only realize this in hindsight. I didn’t understand this disease and I didn’t want it! Diagnosis wasn’t “definite” anyway. After all, criteria for diagnosis were vague so…. I could just decide this wasn’t happening. Right?
My next series of blogs is going to address what we know today about trying to diagnose Sjögren’s Disease. I am going to demystify this for you. I will cover criteria used to date including:
- Symptoms associated with Sjögren’s Disease
- Lab work associated with Sjögren’s Disease
- Dry mouth evaluation
- Dry eyes evaluation
I’m going to break everything down for you. Be sure to join my VIP email list so that you get notified when I release valuable information and specials.
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Barbara Grubbs, Nurse Practitioner
Below are my videos on Sjogren’s Disease and Autoimmune Disease.