Hello my name is K. Most everyone calls me by my initial. I’m a Southern girl but I live in the Midwest. Most of my life I’ve been a Navy Wife, but we’re retired now. I was down those with Sjogren’s back about 2006. I’ve been a lot of years chasing down different immunological specialist. It didn’t seem that anyone could pin down exactly one thing that was causing all the weird symptoms. Dry mouth, weird rashes, joint pains, back pain, and then off the wall allergic reactions to different medications. Then when we moved from Hawaii a new dentist mentioned off hand that I might have something called Sjogren’s syndrome. He wrote it down and gave me some pamphlets to take to my primary care doctor. That is what began my journey. It was only a few weeks after that that they confirm the diagnosis with a biopsy. Suddenly there was a name, abiet a weird name, to pin on all the strange things that have been happening to my body. I was relieved and for brief moment I was almost joyous. I think I spent nearly a year after that being mad as hell. It’s been almost a decade running from one specialist to another, none of which you would even mention Sjogren’s syndrome. I have even been under the care of an immunologist for over a year. It felt like the better part of a decade of my life had been wasted. The good years it just been thrown down the toilet. I was so pissed off. And while all this was going on I was the caretaker from my mother. I got to watch arthritis bend her bones and twist her fingers. I was a spectator as each stroke transformed her into a person I didn’t know. I cooked I cleaned I fed and I chauffeured the woman who raised me all the while my own body was turning against me. It was all in all 15 years of hell. When she passed away I grieve the mother I lost and felt relief that I was free of the burden I carried for 15 years. Then I felt like total s*** that I felt relief. I thought finally I would be free to enjoy my life. The Sjogren’s syndrome had another path for me. I wanted to stand in the street and yell this just isn’t f****** Fair. I thought about doing it on numerous occasions. Usually a bottle of wine and a cheesecake and talked me out of it. It’s harder now that it was before. Some days I get tired easy. On other days I might be able to do more. I know some days my joints just hurt so much so that getting out of bed is all that I can manage. I look at the middle of the street and I think about running out there and screaming. And then I think there’s better things I can do with my energy in my time. It’s not fair. It was never going to be fair. If it hadn’t been Sjogren’s it would have been something else. Everybody has a burden to bear and this one is mine. So that is my story. I hope I didn’t bore you to death. I think it’s time for wine and cheese cake.
Aw Kgor, my heart goes out to you. Praying you find some comfort. I’m also a caregiver right now and I have an AI disease. its a different one… called “GPA” its not as “in your face” as sjogrens (sorry pun unintentional) but gpa is still a bear. especially since I’m young. We are here for you Kgor, and NO your story is DEFINITELY not boring. It matters and its a relief (weirdly) to know someone else knows how you feel.
Kgor, yours is not a boring story at all: so many people here will be able to relate to your years of being undiagnosed, followed anger at the time and quality of life that was wasted because someone was asleep at the switch. Your quality of life, as well as your family’s.
I’m Seenie, and I have Psoriatic Arthritis. (No this is not the 12 step program!) I, too, was undiagnosed for a long time, in total 15 years. During that time I was told repeatedly that there was nothing wrong with me that couldn’t be cured with weight loss and exercise. I had two knee replacements (all because I’d been a teacher, on my feet all day, they said). I too looked after my mother, through her years of dementia, and I remember the feeling of a burden being lifted for both her and me when she died. Trouble was, the day she died was the day they discovered joint damage that led to my diagnosis. And yes, I’ve been angry ever since.
I joined Ben’s Psoriatic Arthritis board, and discovered that I was in good company, that I wasn’t the only one who was mad as h3ll, and that there were lots of other people who had non-diagnosis stories like mine. Later, when I started working for Ben’s Friends as a volunteer in Moderator Support, I realized that being angry about being undiagnosed for years, and feeling like an over-exaggerating whiny hypochondriac, was in fact a very common experience for people with rare diseases and conditions. And I found that being a helper and an advocate for others with rare diseases was a great outlet for my anger.
Doesn’t it feel great to know that you aren’t alone! And you aren’t crazy (like you were made to feel). And no, it’s NOT menopause. (I’d love to know what excuse doctors use with men!) And of course you’re angry about it. Yes, we get that here. We get ALL of it. And that is the beauty of Ben’s Friends communities.
We’re so glad that you found us, K, and we hope that you’ll share your wine and cheesecake with us.
Seenie from Moderator Support
Oh dear. I feel like I sounded far more depressed than I actually am. I have my days where I’m frustrated. Most days I’m in far better mood than that. I think I was trying to give just more of a general overview of how it got from point A to point B. It was definitely not a straight line, more of a tangled up mess. I wouldn’t want people to think that I’m some recluse living in a hole alone. I have a lovely husband and wonderful daughters. I don’t get around as good as I used to but I’m trying to figure out how to fix that. The getting around part might not get better but maybe I’ll figure out a way for me to do it my way. At least I hope so. I’m one mean scooter driver these days. I have managed to find every store with a scooter in my town. I drive down to the veterans hospital twice a week for hydrotherapy. Which does more good than harm I think. Least it gets me out of the house. I’m pretty good at arguing with insurance companies and doctors at this point. I wish more doctors spent more time learning about rare conditions like Sjogren’s. I wish a lot of things these days. Most of them I know won’t come true. But hey a girl can wish.
… and drink wine and eat cheese cake. LOL
Wine and cheesecake are a beautiful thing. I keep a package of Oreos in my fridge at all times too. LOL. Welcome to the site. I totally understand the long journey just to get diagnosed and the weird relief you get when it finally has a name.
The journey winds all over the place but you are definitely in a spot where people get it. The one decent thing is that it does go in and out to a point. it sounds like you have time to finally get to know the “new” you so maybe you’ll find things that work for you…diet, rest times, triggers…that will hold back flairs.
I wish you all the best and know that you are in a great place to vent.