Hi all. My name is Jenna. I just signed up a couple days ago. I was diagnosed about 2 years ago with primary SS accompanied possibly by Fibro. My SS is proven, the Fibro isn't.
I became very ill in 2013. Everything hurt, I couldn't stay awake, I could barely sit up, couldn't eat. I was having symptoms I couldn't describe to anyone so many thought I was making it all up. I was sick for months, progressively getting worse. Finally, after about 10 months, I couldn't take it anymore. My GP wanted to check for Lupus but, luckily, she did a full AI panel. My blood showed I had, without a doubt, SS. Part of me felt relieved. I wasn't crazy or a hypochondriac. I felt justified (stupid, I know). Another part of me was devastated. I knew I was ill. But I believed once I saw the right doctors I would be well eventually. No way did I consider I might have something incurable, and definitely never expected progressive to be in the picture.
As silly as it sounds, a little part of me is still in denial. I have dry mouth and have had an incredible thirst as long as I can remember, but nothing like some other patients. I have dry eyes enough that I required tear duct plugs (my insurance wouldn't pay for medication). Again, it didn't seem as severe are those who had Sjogren's. I know in my head I have it, but my heart doesn't want to believe it completely yet. I wonder if anyone else has experienced that.
With my health history, my rheumy says I have likely had undiagnosed SS for at least 30 years. It truly does explain all the symptoms I have had with pain in my joints, balance, my legs giving out of me as if they weren't there, etc. And why so many doctors couldn't or wouldn't find what was wrong with me. They weren't looking in the right place.
I know SS is not generally fatal, but I also know it can be. I am already experiencing breathing difficulty. I am not really worried about that much anyway. I worry more about being a burden to my husband who is 15 years my senior.
I am doing what I can to find out information about SS but find so much conflicting and trivializing information on the web, even among reputable sites. I am glad I found this site and hope it is active. I really need people who understand. I went to one support group where someone told me off for being upset at a nurse who gave me wrong information. Another time for having a rare moment of feeling sorry for myself. Turned out this person didn't even have SS. So I can be somewhat afraid to really open up. Hopefully I can be open here without being attacked.
Hi Jenna, welcome!
Quote from: Jonchri on April 03, 2016, 06:38:44 PM
I really need people who understand. I went to one support group where someone told me off for being upset at a nurse who gave me wrong information. Another time for having a rare moment of feeling sorry for myself. Turned out this person didn't even have SS. So I can be somewhat afraid to really open up. Hopefully I can be open here without being attacked.
Rest assured, when you come here to this forum, there are other members who
DO suffer from Sjogren's Syndrome too - we all are walking the same path - as different as the journey's are on this path, we still have common ground - Sjogren's. We get it . . . .
When a person gets a diagnose of Sjogren's, one normally goes through a kind of grieving process for the health we once had. The five steps of grieving: denial, anger, depression, bargaining, and acceptance. Some go through all five stages, some skip stages.
There are some very good Sjogren's books available.
The New Sjogren's Syndrome Handbook (a publication of the Sjogren's Syndrome Foundation),
The Sjogren's Syndrome Survival Guide,
A Body Out of Balance are all good books that I have.
I hope you find this forum helpful to you on your Sjogren's journey. If there is a certain topic you are interested in, if you type it in the Search box to the top right of this page, it will take you to previous threads about that topic.
We also have a live chat once a week on Thursdays, from 7-9 p.m. Central time. A person can come for a part of the chat, or the entire chat.
Again, welcome.
Bucky
Welcome jenna. If you have not read "Spoon Theory" do so. You can find it on the internet.
some of us have posted what we are taking in our signature. Before trying any drug or supplement, check for counter indications, interactions and side effects.
The three S's of sjogrens are: sip, swish, and swallow. I use this for water all day and night.
there is a pain/anxiety cycle that is part of a flair. If you can interrupt this cycle, you can reduce the intensity and duration of a flair.
1. Don't panic
2. Breath through the pain instead of holding your breath.
3. Practice meditation (Breath in, "I am". Breath out, "calm") before the flair so it will help during.
Just a reminder to get yourself an appt. with a pulmonary specialist to get your lungs assessed. Sjogrens can cause some lung issues that need to be treated. Good luck. Irish
Welcome Jenna,
Yes, we here do understand. It helps to be where others relate to what you are describing. We all run things by each other, and help each other as much as we can. Not as doctors, but as others who are in this together.
Hugs,
susanep :)