Living With Autoimmune Illnesses

INTRODUCTION
On March 9, 2009, at the gentle urging of some good friends, I decided that I would start to write a little online about my life with Sjogren's syndrome and fibromyalgia. It is my hope that my sharing about life with autoimmune illnesses might bring a better understanding for those who know someone who has these illnesses---and for people who have these, that they may not feel so alone. (My story is after the list of links to posts regarding fibromyalgia and Sjogren's Syndrome.

How It Feels To Have An Autoimmune Illness---or Two
People's Perceptions
A Glimpse Into Our Household
Pregnancy #5
Surprised by Life (3/14/09)
Illness + Pregnancy = ? (6/8/09) written while I was on bedrest
Fibromyalgia, Pregnancy & Me (6/30/09) written while I was on bedrest
Fibromyalgia & an Irritable Uterus (7/14/09) written while I was on bedrest

This year, I also participated in National Invisible Illness Awareness Week 2009:
Monday: Reflection on the Upcoming Week
Tuesday: Top 5 Things Not to Say to a Person With a Chronic Illness
Wednesday: Top 5 Ways to Be a Good Friend to Someone With a Chronic Illness
Thursday: 30 Things You Might Not Know
Friday: Hope

And now, here's a little story about how my world was broken and put back together.

MY STORY
Something was not quite right, though I was hard-pressed to explain exactly what. And all my hesitant descriptions of my health were met with: "Well, you do have small children! Of course, you are tired!" But the fatigue and aches were more than motherly tiredness.

As the mother of two small children, I knew what it meant to be tired. Now, however, having just given birth to our third living child, I felt a tiredness beyond the norm.The exhaustion would not go away. Unlike average tiredness, this weariness was unable to be slept off. I could go to bed for a long, uninterrupted nap, and still emerge with even more sleepiness. And the aches felt deep into my muscle and bones.

For months, I felt this, expecting one day to wake up and have it all go away. Soon, I thought, I would get back to me, get back to the energetic whirlwind that I've always been. But the days passed, weeks hurried along ... and I still felt on the verge of the flu.

UNUSUALLY QUICK
Due to my five months of bed rest, I had dislocated a disk. I thought I'd go to the doctor, have a quick treatment, and then continue on. It'd be a slight discomfort then I'd become myself again. "Is there anything else going on?" the doctor asked me. "How do you feel overall?"

And because I never was one to go to the doctor, I felt that I should make the most of my once-a-year visit. "Actually," I told her. "I'm not feeling like myself at all." I told her everything ... presenting bits and pieces of a puzzle, though at the time I did not know that these random articles would form a greater picture and an available diagnosis. She hear about the bone-crunching exhaustion; eyes so dry and gritty that they hurt and my contacts became unbearable to wear; waking up in the middle of the night from my skin itching so horribly; the sensation of my muscles on fire; those strange episodes now and then when everything hurt my skin, even the lightest shirt or the smallest caress.

To her immense credit, my doctor was alarmed and immediately ran a series of blood tests. I could tell she was thinking something, but she did not mention what, but told me to she'd get back to me. A day later, she called me and said, "What have you heard about lupus or autoimmune illnesses?"

"I know it's bad," I said and numbed over. I don't remember the rest of the conversation.

TESTS
Dr. L sent me to a rheumatologist who ran through a series of questions, ordered more bloodwork,and sent me to the ophthalmologist.

"My God," the opthalmologist said after he checked my eyes. "Your eyes are like the Sahara!" He had given the Schirmer's test to see how much moisture my eyes would produce. It was essentially eye drops and then little tabs beneath my eyes to capture my tears and measure how much I produced.

I had nothing.

"You must never, ever, ever, ever, ever, ever wear your contacts again," he told me, deeply scowling. "You have no moisture in your eyes. I'll plug up the tear ducts so you'll have something, and you need to use eye drops. But you must never, ever wear contacts again. You will scratch your eyes and lose your eyesight."

I hated glasses. (I still loathe my glasses.) "All right."

"No!" he shouted emphatically. "I'm serious. Never. Your eyes already have some scratches from being so dry. You need to take fish oil supplements and wear glasses and use eye drops. I'm serious!"

"OK!" I shouted back, and he seemed pleased.

Returning to my rheumatologist, I waited for him to tell me what I had. He said, "Usually, it is very difficult to diagnose an autoimmune disease. There are too many symptoms that overlap. It takes years to put it together ... unless you have a certain antibody in your blood."

"Do I have that antibody?"

"Yes," he said. "And you have Sjogren's Syndrome. Your autoimmune system does not function properly, and your white-blood cells attack the moisture-producing glands of your body."

He spoke at length about what I had, but all I could think about was how horrible it was: autoimmune illness. God help me.

"And you also have fibromyalgia," he said.

After the dizzying appointment, in which he prescribed a plethora of vitamins and new habits and behaviors for me to adopt into my life, I cried like a baby. Sitting in the parking lot of the hospital by myself, I cried and cried and cried because I knew that I would never feel better, not like before this all happened.

Progressive illness. No cure. Managing pain. Changing one's lifestyle.

It all seemed overwhelming ... and even in writing this now, four years later, I am still processing everything that has happened ... but I somehow managed to get home and wept in my husband's arms.

"How did this happen?" he asked softly in bewilderment.

"They don't know. It could be genetic. It could be the result of a bad virus or dangerously high fever ... I've had plenty of those in my life. They don't know."

"Can it be cured?"

"No. Just managed. And that's the worst part of it," I said, erupting into tears again. "I'm always going to have this feeling ... this annoying feeling that I'm coming down with the flu. My body thinks it's getting sick, and so it is in full-defense mode. So I'm fighting myself."

He looked as devastated as I felt. "How could this happen overnight?"

"It's like a switch, he said," I told my husband. "The doctor said it was like I had this dormant inside me, and something triggered it awake. In my case, it was my pregnancy that kicked it into gear."

"What do we need to do?" he said, and all he could do for a while was just hold me.

NAMED
Later, much later after the diagnosis, I began to read more and learn more.

If anything, I am grateful that what I had was given a name. At thirty-three, I was young to have this illness, which most people find out about in their forties. But, thank God, I don't have to wonder if I'm crazy most of the time for feeling this way.

Yes, I have two autoimmune illnesses. I have a good life. It's just a different life and a little harder than I expected. But it's my life and I want to live it well.