Workin' It, Ownin' It


*Post title not to be compared with Julia Robert's role in Pretty Woman*

I've finally decided to own up to my blood tests. Several months ago, my rheumatologist told me that I have (or will have) Sjogren's Syndrome, a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands.

Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma.

When my doctor explained the disease, he mentioned the dryness effect. Dry eyes and mouth ... I couldn't recall ever having those symptoms. But after connecting with others who live with Sjogren's, I've learned there really is much more to it than that.

  • Dry skin (Maybe that's why I've been moisturizing like a fanatic)
  • Fatigue (I always chalked this up to being a mom-of-3, but no matter how much sleep I get, I'm still tired. I used to have energy. Really, I did.)
  • Ear pain (My ears have been "popping" a lot lately. It's annoying)
  • Joint pain (You'd think with a titanium hip, my join pain would lessen. But, nope)
  • Difficulty swallowing (yep)
  • Always thirsty (yep)
  • "Brain fog" - a lay term to describe fluctuating mild memory loss (I'm a tried and true blond, but it's possible)
  • Celiac Disease (between 4.5% and 15% of people with Sjogren's also have Celiac Disease, which I do have a lot of symptoms for - I need to look into this further, but it's been on my mind. I've ignored it, because I don't really want to eat Gluten-free)

I don't mean to seem like a hypochondriac, but all of these things make sense now. I also want to add that these symptoms have become new to me this year. I don't know if Sjogren's was brought on by the silcone in Mirena, or if it was something I was destined for. But I do know that these problems are new to me. I have also read that "silicone poisoning" causes Sjogren's Syndrome.

Since symptoms of Sjögren’s mimic other conditions and diseases, Sjögren’s can often be overlooked or misdiagnosed. On average, it takes nearly seven years to receive a diagnosis of Sjögren’s.

Lucky (or unlucky) for me, I was on a fast track for diagnosis, because my doctor's were trying to figure out why I developed Avascular Necrosis (though Sjogren's Syndrome is not a known cause of Avascular Necrosis). Last week, I was re-tested and my blood levels still indicated that I have Sjogren's Syndrome. I don't know why I thought that it would just go away.
My original tests (in March) also indicated a clotting disorder. But with my tests from last week, those levels had come down significantly. That was a good thing, but it also makes me wonder what caused the clotting in the first place (hmmmm). I might go to see a hematologist just to completely rule out a clotting disorder.

I guess what all this rambling sums up to is that I probably do have Sjogren's Syndrome. And until the blood tests reveal that I don't, I'm going to "work it" and "own it."

I plan to start taking Plaquenil, which is what my doctor suggested to slow the progression of Sjogren's. Since using Mirena, I've been picky about any prescriptions, and I pay closer attention to side effects. I was nervous about Plaquenil because it's main side effect is vision impairment. I happen to have 20/20 vision and that is not something I want to forfeit. But other Plaquenil users say this hasn't been a problem for them, so if it'll save the rest of my body, I'm willing to give it a shot.

Another interesting tidbit: Sjogren's Syndrome is what forced Venus Williams out of the U.S. Open last year (


  1. Hi Denise ~ I am curious what type of clotting disorder that you have. I have Sjogren's syndrome but several years before that, I was diagnosed with a clotting disorder called Factor V Leiden. There are clotting disorders that can be associated with Sjogren's called Antiphospholipid Antibodies which I do not have but I have always wondered if there is a correlation between the Sjogren's and the Factor V. The doctors say it is a coincidence but I have learned through dealing with the medical system that they don't always know everything! :-)

    1. Hey Christine! An elevated "D-dimer" test indicated a clotting issue. But I haven't been tested further than that ... yet. I am particularly interested in Factor V Leiden though. I learned from another blogger that there is a connection between Factor V and Avascular Necrosis (which I also have). I have not heard about that connection with Sjogren's Syndrome, but now you have me wondering. I'll have to look into that. You are absolutely right - they don't know everything. In fact, the don't seem to know many things! ;-) After I get further testing from a hematologist, I will definitely let you know how it turns out!

  2. Autoimmune diseases are never fun no matter what you call them. I have Mixed Connective Tissue Disease (MCTD) and RA. Lately the signs of Sjogren's Syndrome have been more pronounced (not unexpected w/ MCTD). My rheumatologist feels there is a link between autoimmune diseases and Leiden's Factor. My sister is positive for Leiden's; I'm not. She is just started the process for testing for autoimmune diseases due to joint pain when cancer got in the way. So she'll deal with that later.

    1. I hope your sister's test come back OK. It sounds like she has already been through enough. I have a lot to learn about autoimmune diseases and clotting disorders. I'm very interested to ask a hematologist about a connection between Sjogren's and Leiden's.



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