Lynne's Sjogrens Syndrome - Stories- Jan's Sjogrens Story Page

Welcome Friends

Jan's Story

I am a 49 year old female, married over 30 years, a mother of two grown children, and a grandma to 6 precious granddaughters. I have truly been blessed.

I have often felt alone with Sjogren's Syndrome but after reading all your stories, I no longer feel that way. It's such a misunderstood illness until you've had it for awhile.

I can trace Sjogren's back to my teen years. At age 16, I had what seemed to be a normal appendectomy, but after surgery I developed an infected abscess. I ran over 105 degree temp and was hospitalized for weeks in isolation.

At age 17, I came down with mono. I don't think my energy level ever returned back to normal. I've always been tired.

After getting married, we faced the sadness of infertility. For years and years we so wanted a child. But I was dealing with endometriosis. And as I wrote above we have two blessings by way of adoption.

In 1980 I developed a goiter on my thyroid gland. I was placed on synthroid but ended up having the goiter and most of my thyroid removed. Two years later I had a total hysterectomy. So many many changes. It seemed my body just couldn't recover. It was just one thing after another. And I always felt like I had the flu, achy all over. My husband used to tell me that no one could have the flu that many times and he was right.

I have read all your stories and have found so much in common. Everyone went through so much before being diagnosed with Sjogren's. I am one of those also.

It was in April of 1991 when I was getting ready for bed. I felt fine and quickly fell asleep. At 2 am I suddenly awoke feeling as if I had come down with the worst case of the flu. I stumbled out of bed and into the bathroom. I actually had to hold on to the sink just to look in the mirror. I couldn't believe what I was seeing. My face was so swollen and painful, just like having the mumps. I felt so sick all over. I called for my husband to help me back to bed. The next morning I went to the doctor and he diagnosed me with having mumps. He placed me on an antibiotic and told me to stay in bed. Within two weeks I started feeling better. But that didn't last long.

A couple weeks later the same thing happened and my doctor sent me to an ENT doctor. That doctor ordered tests to see if I had any stones in my parotid glands. The test was negative.

A few days later I became so very ill that my husband took me to emergency. I was just too sick to cope with this. I was placed in a room with IV's and was put on Medrol, a steroid. But I began having terrible panic attacks. I would have an attack and then cry for hours, becoming very depressed. I spent five days in the hospital and then returned home feeling a little better.

But the panic attacks increased. I tried to hide them. I didn't want anyone to know that I had these terrible attacks. I wouldn't have a warning when one would attack. I stayed home a lot. But today I share my story with others including the panic attacks. They are real and I try very hard to watch my stress levels. But I still have them occasionally.

Our insurance changed due to my husbands new job. I changed doctors and went to a wonderful doctor who was very interested in my case. He ordered so many tests and sent me to have a lip biopsy. And that is when I tested very positive for Sjogren's Syndrome. All I could say is WHAT IS SJOGREN'S SYNDROME?

The next few years were very difficult. I was in and out of the hospital with chest pains that ended up being gall bladder attacks. I finally had it removed.

I would try new medications only to have reactions to them. Today I am seen by my family doctor, eye doctor, and the dentist. Since I had rheumatic fever as a child, I need to medicate before every dentist visit. My teeth and gums are in very poor condition due to Sjogren's. My teeth are very sensitive to cold. Now I know why I had all those cavities.

Since being diagnosed with Sjogren's in 1992, I have developed other autoimmune problems. Along with the Sjogren's, I have the following: Type 2 diabetes, fibromyalgia, chronic fatigue, narcolepsy, irritable bowel and bladder, neuropathy in my feet, burning of my hands, feet, and tongue, panic disorder, blepharitis in both eyes, and menieres ear syndrome. And my face is very swollen and painful most of the time. Sometimes when I'm starting a Sjogren's flare up, I will have this wavy feeling going throughout my body. It's hard to describe but I feel almost like fainting.

As of today, I am back on antibiotics for an ear infection. I sometimes need antibiotics for the Sjogren's. I have to pace myself throughout the day, often taking naps. I do go out sometimes but I am so allergic to certain odors such as perfumes, hair sprays, and all fragrances. I sound like a hypochondriac to many, but this illness has totally changed my life. I am light sensitive so I avoid the sun and bright lights. The sun makes me so sick. I get the butterfly rash on my face and I feel flu like being in the sun only a short time.

My eyes, mouth, esophagus, and skin are very dry. Three of my tear ducts in my eyes have plugs in them. I constantly use eye drops. And I am very careful as to what I eat because I choke very easily. And I never leave home without a huge bottle of water.

I want to thank Lynne for this wonderful site. I have been so encouraged by it.

I would like to dedicate this story to my husband, Bruce, who has stood by me for so many years. We have learned to take one day at a time. My husband has a wonderful sense of humor and I truly believe that laughter is good medicine. And my granddaughters bring me so much joy.

In my spare time I enjoy scrap booking, writing, reading, music, and my computer.

So although there is much suffering in our lives, I am so thankful for my family and friends. Again, thank you for such a wonderful site to share our stories.

My prayers are with you all. May God Bless.

Disclaimer

The author of this page does not promote, support, or recommend any particular treatment or medication for any medical condition. The opinions expressed in stories or links are the responsibility of their authors. No treatment should be undertaken without the supervision of a physician.