Sjogren's Syndrome Support Group

I have been dealing with so many issues for about 7 yrs now. I always thought it was auto-immune but the doctors told me I was crazy. It took my husband leaving me and my family turning there backs on me for me to realize crazy or not somethings wrong. 10 months ago I went into labor and my daughter was born 2 months early. Someone was watching over us because we both managed to make it. The doctors at that hospital ended up becoming my primary care physicians. because of them i have the start to my answers. In the next few month i have different doctors I'm going to see to have all the tests i need done.

Most doctors offices and other places don't even know what Sjogrens syndrome is. Drives me crazy having to explain things they should know.

I have so much to say but today has been a hard day. My insurance will not let me recieve care outside my state. I watched all my hopes for help go out the window.

John Hopkins Hospital in Baltimore Maryland was where i have been hoping to get help from.

I have read some of the posts here and I'm hoping you all can be people for me to talk to. no one around me understands whats happening to me Im not even really sure I do.

Im 26 i have been like this since i was 19 if this is my quality of life Im not to sure this is a life worth living.

Denylife, I have to say that I am curious about the name you've chosen. What made you choose it? Anyway, it is good that you found this group as you say no one around you knows what you are going through, everyone here does. Every life is worth living whether disabled or abled. It just depends on how you wish to live. You could email Johns Hopkins hospital to see if they could recommend a doctor in your area or if they could tell you what you should be doing. They could maybe contact your doctor to let him/her know what should be the protocol of treatment. Everyone has to learn something, sometime. I am having to 'teach' my doctor some things about a disease/syndrome I have and she does/did not know about. She is not specialized in that area but wishes to help me. She also does not have the time to keep looking it up for me. If she did this for each of her patients, she wouldn't have the time to see any of us. Do you understand my point? Do the research for your doctor. Afterall, if we didn't have a doctor, wouldn't we be doing the research anyway to help ourselves? I have confidence that you will find someone in your area willing to help you. Sometimes it is easier than other times and of course, there are the times it is going to be harder. Just never, ever give up! Of course, we all get to that point, have to vent, cry, have a pity party, etc. (Heavens knows I do) but just remember, things do become brighter in the morning, afternoon, evening, or whatever time works for you. I'm sorry it took losing your husband and seemingly, everyone else to get to this point. Now, it is time to start going up again. Put on a happy face, it does make a difference! I do wish you well. If you need to ask a question, need to vent, or whatever, please do not hesitate to post anywhere on here or even pm me. Blessings!

Janet

Denylife, you are SPECIAL and deserve to be loved and understood. It is unfortunate that the docs you are seeing do not know how to treat you, but this is also common. We are always looking to find a good doctor; it's more common than you know that "we" end up educating our docs to this disease. If we are fortunate, we will find a great rhuematologist that knows exactly what we are experiencing. It may take you having to do some research as Janet suggested in order to find one and I pray that you are able to find one real soon. Would you like for me to do some research for you for a rhuematologist in your area? I work at Stanford in CA and can ask some docs around here if they know of any good Rhuematologists in your area.

Just remember you have the best reason to live... That beautiful 10 month old little girl!! That is all the reason you need!! I am praying for you, that things become clearer and that the stress is lifted away for you to do what you need to do to keeping going for that little girl!!!

I know it feels like you are all alone, but know that you are not. We are all here for you with open arms to help you get thru this. Please reach out to one of us like Janet said for ANYTHING!!! Someone will lend you a dry shoulder, an untouched ear or a big hug.

~Much love to you!

~Carolyn

Denylife, I do understand, as I think we all do on this forum as well as all the forums here. The first day I came here, I felt sad reading about young people in pain. I am fifty years old. I feel like I should have pain and you should not. But, why should I? In fact, I have been in some kind of pain most of my life. I have been through personal struggles, heartaches, emotional and physical pain, as I can get from reading your words, you are too. I am married. I have not been able to conceive. This is heartbreaking, and something I have to live with. You are blessed with a child. I am sure, with your physical ailment, this seems all the more struggle. However, giving birth has brought you on a path of discovery and survival. I believe it is God's plan. I too have been to doctor's that misdiagnosed alot of my illness, labeled me as anxious and sent me away. I used to cry so much, missing periods for months, in pain, moody, etc. I was misdiagnosed with hepatitis and chirrosis of the liver. I still wonder to this day, years later if I really do have liver disease. No one knows. I live in NY, best hospitals! Columbia Presbyterian. They couldn't diagnose me. Sent me away like oh we just have to watch. I have endometriosis, trigeminal neuralgia, sjorgen's syndrome, cystic ovaries, was sent from endocrine doctors to gynecologists, back and forth for years, with no real diagnosis. I really believe, though it is very difficult, that diet and exercise is the key to every one with any disease, to sustain or reverse or feel better, or whatever it is. But please don't say that life isn't worth living. You are very young. Life isn't easy for people like us with disabilities. People at my job laugh at me and joke, and say oh you will be allright. They just don't have a clue. I found out not too long ago that some of my coworkers actually do know what I am going throgh. One has MS, one has cancer, all very young, one girl your age has terrible arthritis, sciatica, another crippling arthritis. This doesn't make me happy, and I wish they weren't sick, but we don't realize there are so many out there living with disease and illness and depression, just like us. Well you know what, we have each other, to lean on, to cry with and to tell our individual unique stories. Never give up! Love your daughter. Don't worry so much about your family. They will come around. And if they don't, sad to say, they are missing out on a wonderful person and her beautiful daughter! Boo to them. Family is always a struggle, mine is the same, mostly estranged. And when I hear from them, it is just more stress. i have my husbands family and my sister, and nephew are close and that's it. I don't keep many friends, maybe afraid to get hurt. Whatever you have to do, please do it. Don't give up. Doon't be afraid to ask for help and make sure your baby is safe. She is your life line! and please what is your real name? Can we call you by your name? Don't worry, it will all work out. Be strong, move on, and try to deal with things anyway possible. Most people never heard of these diseases. I just tell them that Sjogren's is in the lupus family, then they get it. As for my TN, it is labeled the suicide disease, which doesn't sound too promising, but I just tell others that it is like a pinched nerve in the brain that causes facial, ear and mouth pain constantly. That shuts them up!