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I was recently diagnosed with Distal RTA & Sjogren's Syndrome, which has been a spiritual wake up call for me. I decided to create a blog to empower myself, educate my family & friends and create support for others. I live in Central Florida with my partner, my 10-year old son, an epileptic pug and a rescued cat. I am mecurial, sensitve, passionate and intense.

Thursday, December 22, 2011

Imagine Having Sjogren's: Trying to Explain my Life to Family

Christmas Day will be the first time I am together with all of my family since being diagnosed with Sjogren's Syndrome and I'm nervous about it. What if I get a flare-up while I'm there? What if the daughters (my sister, cousin & I) are cleaning up after our meal like we always do, and I get hit with a wave of heat, pain, fatigue, dizzyness, numbness or a myraid of other possible complications that Sjogren's has brought to my life. Can I tell them I have to sit down and can't help anymore? Will they understand or will I hear snarky comments or get a lecture on how everyone has health issues and we need to push through? Will they assume that since I've lived with this for 9 years and pushed through I should continue to do so?

Perhaps the only questions I should be asking myself is, "How can I help them to understand how being diagnosed with Sjogren's Syndrome has profoundly changed me?" and "How can I help them to understand what it is like to now live with Sjogren's?" I scoured the Internet looking for the right article to send them. I've found some that I liked but nothing was grabbing me, screaming out "YES! This is the one!"

Then another lighbulb went on and I thought, 'Well duh Tara! Just send them to your blog!' But for some reason I can't put my finger on, I'm not ready just yet to do that. I realize that is something I have to figure out for myself, but I'm putting it off until after the holidays. So then, how do I do this? Perhaps I can use a post from spiritlove on wwww.inspire.com but alter it some to better describe me. Below is what I came up with; wish me luck!


1. IMAGINE being hospitalized 3 times and seeing 8 different specialists over 9 years before a doctor figures out what is happening to you. That is Sjogren's
2. IMAGINE having chronic fatigue that can take the living out of life. That is Sjogren's.
3. IMAGINE your dry mouth and tooth decay is connected to an autoimmune disease. That is Sjogren's
4. IMAGINE losing feeling in your feet because your nerves are damaged and your circulation is bad. That is Sjogren's.
5. IMAGINE that it is terrifying to be without your water bottle to alleviate your dry mouth. That is Sjogren's.
6. IMAGINE when water is not enough to replenish the lacking moisture in your body. That is Sjogren's.
7. IMAGINE waking up every day and your eyes are blurry even with your glasses on. That is Sjogren's.
8. IMAGINE feeling as if there is sand in your eyes and nothing helps. That is Sjogren's.
9. IMAGINE having to regularly see a rheumatologist, dentist, opthamologist, OB/GYN, psychologist, neurologist, endocrinonlogist, dietician and gastroenterologist. That is Sjogren's.
10. IMAGINE being constantly fatigued and unable to participate in life and you're told "You are just depressed." That is Sjogren's.
11. IMAGINE being so tired that the word 'fatigue' doesn't cover it, that 10 hours of sleep doesn't help and that your friends & family think you're just lazy. That is Sjogren's.
12. IMAGINE knowing all of your teeth must be extracted and you'll have to get dentures because you don't have dental insurance and can't afford to get implants. That is Sjogren's.
13. IMAGINE knowing you are sick and being told you are crazy. That is Sjogren's.
14. IMAGINE you have pain in one of your legs that never goes away. Some days it's tolerable and you just have a slight limp. Other days the pain is non-stop and you cannot walk without assitance. That is Sjogren's.
15. IMAGINE living with a chronic disease most people have never heard of and cannot pronounce. That is Sjogren's.
16. IMAGINE having your hands go numb when you're simply holding a book to read, typing an email, writing a letter or filling out forms. That is Sjogren's.
17. IMAGINE the debilitating disease you suffer from is sometimes referred to by physicians as a "nuisance." That is Sjogren's
18. IMAGINE painful burning sensations in your feet that keep you awake at night. That is Sjogren's.
19. IMAGINE having a disease with no simple solutions or treatment. That is Sjogren's.
20. IMAGINE having a disease that is hard to explain to your best friend aand mother. That is Sjogren's.
21. IMAGINE having a disease that can leave you disabled, but you don't look sick or disabled. That is Sjogren's.
22. IMAGINE making plans to go somewhere with a friend but you're forced to cancel because you're exhausted, and your freind gets angry and complains that you're unreliable. That is Sjogren's.
23. IMAGINE having episodes of joint pain with no explanation. That is Sjogren's.
24. IMAGINE seeing the strain and extra work your mate has due to your health and worrying how it will affect your relationship. That is Sjogren's.
25. IMAGINE feeling terrible constantly, and being told it's all in your mind. That is Sjogren's.
26. IMAGINE having a disease with no cure and only symptomatic treatment options. That is Sjogren's.
27. IMAGINE worrying about how this is affecting your son and not being able to be more active in his life. That is Sjogren's.
28. IMAGINE feeling as if you have the flu, all day, every day and no one knows why. That is Sjogren's.
29. IMAGINE having brain fog so bad that it takes you a few minutes to remember the name of your favorite movie. That is Sjogren's.
30. IMAGINE realizing that you are forgetting important things that affect your life. That is Sjogren's
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4 comments:

  1. Tara this is a great outlet for you to journal your journey and to help all of us better understand what you are dealing with. No one has ever walked in your shoes, ever spent a day in your body or dealt with the fears in your heart. Be kind to yourself and be patient with them . <3

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  2. Thank you for posting this. I think you speak for all of us when you write how difficult it is to explain Sjogren's to friends and family. Let's not leave out the major organs effected by Sjogren's and the slew of medications we have to take (which come with horrible side effects and weight gain). Let's keep bring awareness! Thank you again!

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  3. Thank you for this article. I wish I had the courage to share, but not yet. My brother and children understand, but my husbands family does not. Push through sounds so familiar or the pain is all in your mind. I am a upbeat person but this is starting to get to me.

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