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That's what we are here for Rose!! To vent to each other. It is very hard battling this crap and trying to stay nice to people. Some days you just want to scream and tell everyone to leave you alone. I tell myself that I'm going to the bedroom to have a pity party (which he knows I'm feeling sorry for myself and frustrated with the world in general and want to cry). Anytime you need to vent, please do some. I've also read some suicidal posts on here and other sites. We need each other to keep our spirits up. I live for the good days. They seem too few and far between, but I make do on the bad days. I also think I'm just in the beginning stages of this crap--well getting into moderate, but...I think I have more to come.

Rose said:



Rose said:I guess I was fortunate - it showed up in my blood right off the bat. I had been having some really bad pain mostly in my legs. I was taking 800mg ibuprofen and it wasn't even touching it so I ended up in the ER and the dr said he wantedto do an arthritis work up on me so he took some blood a day a couple of days later he called to tell me I had Sjogren's Syndrome- I had never heard of it. That was several yrs ago now but as I have looked back over my life, it's obvious to me that I have had it at least since my late teens. Now I m 64 yrs old and life isn't too fun- I try not to be crabby but it's hard. I no longer take the drugs I have been on for several years because of the side effects and they just didn't seem to be working anymore. My biggest problem is fatigue - I have to do everything in shifts- it takes me forever to get things done and then of course I am always fighting depression. I now have dentures after putting thousands of dollars in my teeth. I never thought I would turn into such a crabby old lady. I hate feeling this way. I just realized what a depressing post this is - sorry. Just needed to vent.

This site has been a life saver for me. I have not been on for awhile. I did not have a diagnosis as of yet and was trying to just act like some of the others, like it wasn't happening. I had had a couple of good weeks, so was feeling pretty positive. I finally saw a rheumatologist a couple of weeks ago and since then been trying to quietly deal with what he said on my FIRST visit! He said that the sjorden's may never show up in my blood system, but he could tell from talking to me that I had it and the only way to know for sure was to do a lip biopsy. Ummm...no thank you! He also diagnosed me with fibromyalgia--this was the shocker for me. Yes, I have pain daily (stopped taking all tylenol, aspirin, ibupropen a couple months ago). I thought if this is now, what's it going to be like later. I can deal with this pain, so lets save the pain killers for when I can't. I've only taken them a couple times. I do use eye drops when needed. I sleep on my lunch hour every day. I cry a lot also. One of the ladies said you have to let go of the guilt you are holding. You can only do what you can do. I am very lucky to have a very supportive husband who cooks almost daily, but clean up--again ummmm....no! lol We have a thing we are trying to implement in my family (I have two children 21 and 12 that live at home also). Instead of mom getting angry at herself and taking it out on everyone cause I want my house clean and I can't do I need to tell them, I need help!! It takes a lot to say those words, but they have helped. Sjorderns sucks!!! But...don't let it run your life! If you need a day, take a day. If you need a nap, take one, but keep doing what you love. I've found that helps me the most and having family support. Tell hubby you need help with house, just need held, whatever it is you feel you need.

Everyone,

Always so moving to me to read all the posts. To one degree or another, we are each of us suffering in our own way. It is so tough battling the fatigue, muscle and joint pain, dry eyes, and most of all dry mouth. I call this malady my "private hell". I don't push myself and refuse to make excuses for myself to others. Those close to me know I have limited energy, so when I say I can't do it, that's it, I can't and won't. Trying to put my life in perspective...........my very best friend is currently battling cancer. She has been on Chemo for over a year, with no end in sight. I guess that sums it up.

Sending love, prayers and good thoughts to all!

I have just finished reading a Buddhist-inspired book called How To Be Sick by Toni Bernhard ... some of it resonated with me and some of it didn't BUT overall she makes a number of really helpful suggestions for how to approach/manage/cope with the challenges and often self-defeating thought patterns of chronic illness. It is written with both the patient and caregiver in mind. I recommend it, even if you only take one of her ideas away and integrate it into making your own life easier.

It took over a year for me to finally be diagnosed with Sjogrens. I'd been battling dry eyes and especially dry mouth. Nothing the dentist had me try worked. I've lost quite a few teeth and now they want to do dentures for thousands of dollars and I'm only 59. I get very frustrated as talking is much of what I do in my job. With such a dry mouth it has greatly impacted my ability to talk and be understood. Finally my rheumatologist sent me for a lip biopsy. Simple procedure, painless and in and out of the office quickly. The biopsy was positive so she started me on Placquenil. It takes about 6 months for it to build up in your system so I'm trying to patiently wait. I also have rheumatoid arthritis for which I take Enbrel injections, fibromyalgia for which I take Gapabentin and Polymyalgia Rheumatic which I'm taking Prednisone. Lots of medications and side effects to go with them. I think the fatigue is the most frustrating for me as well. The other night it took me 2 hours to mow the yard instead of the 45 mins it took last summer. It was very defeating to have to stop and take rest breaks. I live alone so I'm looking to hire someone to do it for me if this keeps up. I wanted to cry but my eyes are so dry I don't make tears so I don't feel like I've gotten that release having a good cry can give you. I appreciate this site. Good support system and ideas for treatment and questions to ask my rheumatologist from other's posts.