Sjogren's and Bicycles

After literally years and years of doctors ignoring me, I was finally listened to.  Strange that it was an ENT that finally listened.  I've had fatigue and just a sense of being unwell for most of my adult life.  I'm sure I even blogged about it.  About 5 years ago, I developed migraines and everything snowballed from there.  Doctors would check for one thing and when that came back normal, I had to wait 6 more months to go back in for them to check another, etc.  Some of my test results came back normal, but some would come back abnormal, but they would still dismiss it.

About a year ago, I developed this strange thing called geographic tongue. Doctors would tell me that it is a benign condition, but it was like my body screaming that something wasn't right.  Around Christmas, I got a sore, inflamed throat that didn't go away for 4-5 months.  I took multiple rounds of steroids, antibiotics, antifungals and it didn't help.  My dr finally sent me to an ENT.  He did some bloodwork and found my CRP and sedimentation rate was high.  Funny thing is. . .they've been high for a long time. . .someone just paid attention.  They would tell me that it shows inflammation in the body, but they wouldn't investigate where that inflammation was coming from or tell me how to get rid of it.  Anyway, my ENT sent me to a rheumatologist.  One of the blood tests that they ran was for Sjogrens antibodies because my ENT suspicioned Sjogrens.  They came back negative.  Thankfully, instead of dismissing it again, they sent me for a lip biopsy.  In about 30% of people, the antibodies don't show up and a salivary gland biopsy is needed.  I had the lip biopsy on Wed and yesterday I was diagnosed with Sjogrens Syndrome, an auto immune disorder where your body attacks your salivary and moisture producing glands.  Not only do you experience fatigue, dry eyes, dry mouth. . .but also joint pain, neurological issues, dysautonomia, irritable bowel, constipation and it can go on to attack other glands in the body.  I have problems with my thyroid and kidneys and wonder if it is all related?  You are also at an extremely high risk for lymphoma.

So, not sure where I go from here.  Usually if you have one autoimmune disorder, you have more.  They usually start people on an anti malaria drug that is supposed to help.  Time will tell.  For now, I am grateful that a doctor finally listened to me.  I can't tell you the relief that I feel and the hope that I haven't felt in a long time.  I do worry about my girls as auto immune disorders are hereditary and now my girls have it on both sides of the family.  My mother-in-law has lupus.  

In other news, both girls are now riding bikes!  I told them when they could both ride, I would get myself a bike.  So, I bought one yesterday.  Right when we set out on our first bike ride, however, Abigail crashed pretty badly.  Blood was just dripping from her knees.  After spending a few hours recovering, we finally went on our bike ride and Abigail fell at the end and banged up her another knee.  Needless to say, we invested in knee pads.  We have to tell Olivia not to be so cautious and afraid, but that Abigail needs to have a little more fear.  Ha!  She's kind of a daredevil and rides way too fast.  But, it has turned into a very bicycle riding summer. . .very fun!