Wednesday, March 26, 2008

Greetings

I'm Julia - and today is a good day. I'm feeling reasonably well.


Welcome to my blog. I'm a fifty-something woman living in the Pacific Northwest. Five years ago my life changed dramatically. I went from being an active, independent, working lady to someone who spends much of her time carefully measuring her energy levels and matching activities to those levels. I was diagnosed with a chronic disease.

My specific illness is Sjogren's Syndrome, an autoimmune disease. This disease causes my body to create antibodies which attack my own tissues. These autoantibodies attack the glands which secrete tears, saliva, and mucous. The disease also can cause debilitating fatigue, joint pain, and depression.  Sjogren's is similar to Rheumatoid Arthritis and Lupus. Some studies state that approximately 10% of those with Sjogren's go on to develop Lymphoma. 

If you saw me today, other than thinking maybe that I need a better hairdo and eyebrows waxed, you probably wouldn't suspect that I have Sjogren's. I get around pretty well, don't have green or purple spots anywhere, and usually manage to dress somewhat appropriately. Underneath this mild mannered exterior, however, lurks a seriously cranky woman. I deal with eyes that constantly feel like sandpaper, a mouth and lips always dry, and most significantly, bone crushing fatigue. Occasionally my saliva glands become enlarged and painful, and all my symptoms increase dramatically. Those periods are frequently referred to as "flares". I have learned over the years that when I am in a flare, I am in bed. Period. 

Sjogren's has been an expensive disease. It has cost me my job, several friends, most of my hobbies, and a big chunk of my sense of humor. Thankfully, it has also strengthened my bond with my husband, family, faith, and my closest friends.  

My blog isn't intended to garner sympathy, or evoke pity. My goal is to provide a place to share information which may help me and others with chronic illness. In exploring information and experiences, one can hope for many more reasonably well days. 

See you tomorrow. 

1 comment:

Anonymous said...

Hi Julia.
I live in the UK, I'm 50 this year. I've just found your blog tonight.
I've had a Hashimoto's thyroiditis diagnosis six years now. Over this time I've complained about my thyroid meds saying I'm still tired, cold, etc
I had shingles last Easter and since then I have experienced a new batch or things.. sore eyes, dryness at night and during the day when talking at work, fatigue, hot at night, and a rash in the sun on holiday this last August 2010.
I'm having blood tests next week to see if I have Sjogrens. This time I went back to doctor with a collection of symptoms.
I am worried, upset and this blog has given me some hope I can live well with it all.

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