Sjogren's Syndrome Support Group

I am new to sharing this sort of stuff with strangers but sometimes we just need to talk to someone without completely boring our already patient families, right?

So here's my tale: When I was 30 I gave birth to the last of my beautiful three children. Then I came down with pneumonia, which was probably due to caring for three children under five, working full-time, commuting an hour and a half each way, etc. but my doctor found lupus and sjogren's to boot. So I went ahead and had the salivary gland biopsy just to make sure he wasn't blowing smoke. Low and behold, I was the not so proud owner of an autoimmune disease. So being a typically busy mom, I took the high doses of prednisone, started plaquinil and proceeded to ignore everything.

Developed an odd allergy to Cephalsporins and had an anaphylactic reaction. Saw the light, tunnel and everything. Then realized my husband probably could not raise three kids alone and turned around. Some voice said okay, go on back ... it really isn't your time. Added an epi-pen to my growing line-up of meds.

Oh, and then the husband got insecure knowing he might lose me and have to raise the kids alone. Move that dial a few months and he is out of the picture. New wife (better health).

Well move the dial a few years and I had a know-down-drag-out flare. Knocked me on my butt and caused me to have almost a nervous breakdown. So I trooped to my new Rheumy and he began to slowly guide me through it, upping my prednisone, and seeing me. Then he put me on medical leave for three weeks to get the flare under control. Well things got back to normal but then it flared up again and I went back in only to be told he had passed away. Well another mini-breakdown later I landed at a Rheumy that told me it was all in my head. So I requested all my records and send them to him anyway (just to prove my point I think), and scheduled an appointment with a psychologist. Well next Rheumy appt went much better. He said, 'oh you have Sjogrens," no duh! Then he put me a a maintenance dose of 5 mg.

Decided that I needed more support to handle this when things became ugly so I called NIH and enrolled in a Natural History protocol for a few years. It was great. One day every two years and I got a complete workup ... 1 hour eye exam with lots of different drops and pictures, 1 hour saliva collection, etc. Probably the best physical exam and most information I have every received about this disease.

Move that evil dial another few years, I began to have bleeding and went to my gyn. Did D&C, then I was back for Hysterectomy. Decided I should also have a colonoscopy since it is really hard to tell where blood originates (lucky us as women). Turns out I had large fibroids in the uterus (bye-bye uterus) but could keep ovaries (yea, no hormone replacement). But the colonoscopy turned up a large cancerous polyp. The polyp was removed a week before my hysterectomy and then I had to have another colonoscopy two weeks after the hysterectomy. Kind of tired of docs by then...

Okay one more year. Chest pains...Had them checked out, nuclear stress test, etc. Well thanks to being blessed in the chest area they couldn't see what they needed to. Recommendation Cardiocath. sigh...off I go. Laying on the table watching the surgical lights I was going in and out of sleep and asking for more anesthesia (okay I was asking to go back to sleep) when I hear "oops." Don't know about you but that is just not what I want to hear from a heart surgeon, especially the fellow working with him. Then I hear a racing heartrate (oh yeah, it was mine). I'm pretty zen about it since I've seen the tunnel and it was really peaceful. Then I see plastic wrap flying and hear my doc asking for another something or other. Next think i know I wake up and they say there's been a mistake. My heart ripped in two places and they had to put stents in to hold it. I took it well ... my family wasn't nearly as zen. So a year of heart meds begins. Okay let's ignore that too, huh?

But wait, what about the pains. Turns out a torn rotator cuff. Let's just do a little surgery on that. Man! I'd rather have twins than go through that again. But it is fixed, and oops the pain is just as bad. Well too busy to chase that one. Oh, and why not have carpal tunnel release so I can stop dropping glasses (6 in one year). So I did that. Not bad, managed to remove my own cast during a business trip.

Another jump forward and I start falling down stairs (okay we only went two years forward). My kids push me kicking and screaming back to my neurologist. Who had time to be an executive and deal with so many doctors, right? Then he gives me the awesome news that I my carpal tunnel is back, the nerves my legs and arms are damaged, and I have autonomic neuropathy. (oh, and he can tell I have Raynauds from the way my toes compete with my purple nail polish for who is the brightest). Okay ... now I think maybe this health stuff is getting a little depressing. Now I might have to think about what to do with the stress in my life huh?

So that is where I stand now. Six month visits to cardiologist, neurologist, rheumy, eye specialist, Psychiatrist, gyn, yearly colonoscopies since I keep growing polyps like mad, five-year endoscopies, multiple meds and supplements, and a handicap plate/cane for the days I can't walk straight. Still working full-time, three grown kids living with me and in school, and a beautiful two-year old granddaughter to brighten each day.

Don't let the doctors get you down.

Future, well every doctor says "we'll treat the symptoms." Neurologist says, "won't get better, we'll treat the symptoms." Cadio says "you'll live forever" (time for a new cardio). So I think I'll choose to live each day fully and appreciate the days when the meds are winning.

Thanks for listening to my overly long health history.

Welcome to the group! Sounds like you have been through a lot. I'm sure many of the other remembers can relate to it! I sure can.

Write anything you want here.

Have you looked over some of the older posts? Many of the subjects you talk about have been discussed here or at least has an informational posting.

Not sure about the cardio one though, sorry you have that on top of the rest.

So if you need to talk or vent or need help, post it!

Thanks for posting Dee. You gave me a smile, some tears and peace. I hope you continue to share. I'm new here and gaining knowledge and "MDJunction friends".

Hey Dee! Wow you have been through so much. You seriously have such a great attitude! I hope things start going your way

Welcome Dee! Wow what a story your a courage women. I know your children are very proud of you for being a fighter! Thanks for sharing :o)

Hi Dee, You have survived all the pain & hurt that life has thrown at you...& you are that much STRONGER than other people. Remember that! We each have gone through our own stuff so im sure many of us here understand how you feel. I am glad to be part of this group because i have no one else to talk to that even knows what SS is. I hope you now have great DR's that will help you deal with the numerous effects SS can have on your body.

Midgetmom/Caren

Oh my gosh, what a story. I keep telling myself that my situation could be so much worse, and you are living proof. You have so much strength and courage! Bless your heart, you are an inspiration. Thanks for sharing and keep on keeping on!

Hello Dee,

Thanks for sharing your amazing story. I admire the way you have been able to handle everything life keeps throwing your way. May you continue to do so.

Please keep in mind what a person once told me. She said, "You're a strong woman, which is good. But don't be afraid to show weakness at times. It's okay. Sometimes it's okay to say that your hate what is happening to you."

I do tend to make light of negative things that happen to me. My body, though, tends to go into a flare and show physical manifestations of the stress I feel. Gotta stop that.

I have found that meditation and/or prayer helps. So do good doctors and good friends (like those on this site) that you can share with.

Take care!