Monday, March 30, 2009

What Does It Feel Like To Have Sjogrens?

I get asked this a good bit, because on the outside I don't look sick. I hate to say that I am "sick", but in reality....I am.

Sometimes I sit back and want to scream "THIS SUCKS, I AM ON THE DAMN KIDNEY TRANSPLANT LIST BECAUSE OF SJOGRENS"! *sigh*

But I can't change what has happened to me. I can't make the decision to break it like a bad habit.

I can only make the decision to be positive and accept the things I can not change.

So, what does it feel like to have Sjogrens?

The best way I can describe is it is like the feeling you get when you come down with the flu. Your body aches and you are exhausted imagine that everyday....24/7. You get use to it and some days are better than others.

The worst is the fatigue, but as I said before Chronic Kidney Disease can make you feel the same way. Weak muscles, fatigue, shortness of breath, and a general feeling like you are coming down with something.

What are some of your symptoms? What is the hardesr for you?


Denise @ Sunflowers, Chocolate and Little Boys said...

I have sjogrens and fibro....the pain and extreme fatigue are the worst. I have to limit myself daily because I can only do a little before my body gives out. Im so sorry that you need a kidney transplant....and I hope you get that call very, very soon.

Denise @ Sunflowers, Chocolate and Little Boys said...

I hope you dont mind but I wrote a small blog post about you and asked my bloggy buddies to pray for you.
Your in my prayers and I hope your feeling well.

Vicky said...

Thank you Denise. I really appreciate it!

Infonut said...

Praying for you. My sister contracted an autoimmune disease where her body thought all her vital organs were diseases and systematically shut them down. Thankfully they were able to combat it through medication, so she now leads a normal life. Tour blog has me wondering now,because she now has COPD, and just recovered from shingles. Stay brave. Stay strong.

Unknown said...

After so many years of being told I had fibromyalgia, I found a great Dr that tested me for Vitamin D, I was not even on the chart, Now i'm in the 80's I'm NO longer stiff!! It was like a miracle!!!!
Also he tested me for Sjorgens, turned out SSA was 2,5 and SSB was 0.2, Im trying to understand all that, Any one have easy explanation?
I got plugs in my upper and lover eye tear ducks, that has been a blessing, No longer have dry eyes!
Also doctor put me on 4% prednisone for 21 days to clear up my lungs..that was 3mts ago, I must say it's the best I have felt in 15 years.