Thursday, December 13, 2012

In the Know

Sjogren's World is a great resource. 

Yesterday, I received this question from a reader:
I thought I read in one of your blogs that you were interested in what your readers, "have" do you want to know, really?
Well, sure I do, for a variety of reasons.

Mostly my intent isn't a morbid interest in finding out what readers "have"; but instead offering sjoggies an empathetic ear to express themselves in terms of their symptoms and react to the difficulties of this disease. Because in all honesty, there aren't a lot of places to do that; at your your mother-in-law's dinner table, for example. Or over a stack of papers at your workplace. Or sitting in Starbucks sipping a skinny peppermint mocha with your friends.

It's important for anyone with a chronic illness to understand what is happening to their body, but above and beyond the information found in Anatomy and Physiology 101, it's also important to understand how others are coping with all the changes that accompany their disease. The need to connect with others is especially important for those of us who deal with a disease that is frequently unknown or misunderstood even by health professionals. When one sjoggie comments that she "crashed", or that he is in a "flare", we know what that means.

Unfortunately.

When another person with Sjogren's syndrome tells me, "I know how you feel!" it's especially meaningful. Because that person does know how I feel and that is a valuable and rare thing.

When I was first diagnosed, I was certain that since I -- a health professional -- had never heard of Sjogren's syndrome, that nobody else had either. I felt isolated and scared and overwhelmed. It was such a relief to find other sjoggies and compare notes, receive great information, and enjoy tremendous support from those people that could authentically do so.

So, yes. I want to hear from you. Please comment whenever you can to contribute to the discussions that are initiated here or at any other sites where sjoggies gather. Check my sidebar for links to other sjoggie blogs, forums, organizations, and to my email.

So. What DO you have? I really want to know.

7 comments:

Heda said...

Primary Sjogren's Syndrome; late diagnosis Coeliac Disease; so also severe osteoporosis (bone density in spine of average 100 yr old woman; asthma as a result of chronic respiratory illness from Sjogren's Syndrome; heaps of Lupus symptoms including severe light sensitivity. BUT still functioning (just), still working (just) and am counting my blessings every day because believe me it is a day by day situation. Love that someone has asked. Thank you.

Leslie at SugarAndSpiceADK. said...

Primary Sjogrens with Vasculitis and a freaky blood disorder that sometimes goes along with Sjogrens called Monoclonal Gammopathy of Undetermined Significance (MGUS), which means that I am at higher risk to develop Multiple Myeloma. Have to be monitored by an oncologist, and have had two bone marrow biopies and skeletal surveys to watch for excess immunoglobulins in my blood and bone marrow. So, that's what I have (:!!!

Lisa said...

Julia your comments are always spot on .... I find it nearly impossible to describe the daily menu of symptoms/aches/general malaise that now control my life (and typically vary from hour to hour)to anyone inclusive of my beloved husband. It doesn't help that 3 years and 3 rheumatologists later I have yet to establish a medical relationship ... can you tell from this whining rant that I have just returned from a hike in the woods (a source of relaxation I have indulged in for years) that was anything but fun because my body won't cooperate! But hey, the dog had a blast ....

Heidi Syndergaard said...

Thanks for giving us a chance to get 'together' via this forum. As as I know I have primary Sjogrens. I have seen so many docs and some say sicca for me and others say Sjogrens...The foundation posted that article on some breakthrough research on diagnosis and the need for earlier identification in order to prevent additional gland damage...however I wish there were more discussion on what this treatment would be...plaquenil? Immunosuppressants? I have seen little interest by doctors in addressing the dryness symptoms...and these make me miserable...Anyhoo - I read your blog everyday and enjoy all your posts- Sjoggie related on more personal reflections...thanks so much!

Anita Stafford said...

Sjogren's, autoimmune hepatitis, Hashimoto's, migraines, fibromyalgia, and my latest companion, plantar fasciitis. Thank you, Julia, for your daily posts. I don't always comment, but I enjoy whatever you write whether informational or just life.

annie said...

I started with chronic fatigue syndrome and fybromyalgia and for now my rheumatologist is saying primary sjogren's. I have hypothyroid migraines, allergies,osteoarthritis,degenerative spine. I think that's it?

Thanks for the chance to voice our questions and concerns,meet others, and often get some laughs here with you.

annie said...

Ack!! I don't have hypothyroid migraines....I have migraines and suffer from hypothyroidism.Sorry.

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