Living With an Alien: Sjogrens Syndrome

This is about me, a person who has lived with a disease. I am a person who had a dream of realizing self-potential yet, had to accept not physically being able to manifest this dream.

As I stated in an earlier article, Sjogrens is an autoimmune disease, a connective tissue disease. The medical community has not found a cure.

I had never heard of Sjogrens Syndrome until April of 2004 when death came to visit and tried to take me back with it.

Most of us are familiar with the high profile diseases -- MS, Rheumatoid Arthritis, and Lupus etc. Let me preface this story by saying I am not a doctor, I am not an expert I am a patient diagnosed with Sjogrens, I will call it SJS. Technicality is not my forte and this literary journey is in layman's miles, not always logical, never the less just as valuable for those who live and feel the effects of this alien that has invaded our bodies.

Are there any Trekkies out there? SJS, like any other disease is akin to the unrelenting nemesis the Borg of Star Trek. This autoimmune disease occupies our bodies threatening assimilation of different organs and body systems. At times, I think I can hear it whispering, "Resistance is futile".

SJS is different in each person that it tries to assimilate. In my case the symptoms are: aching muscles, debilitating fatigue, dry aching eyes, dry mouth, pancreantitus (which led to diabetes), painful legs and feet, neuropathy, and depression. Writing this is therapeutic, and hopefully, it will help those who suffer from the same alien, or any other alien for that matter, to not feel so alone.

Those of us who suffer from Sjogrens not only must live with the disease also must contend with friends and family who cannot comprehend what we are going through. We hear them say, "you don?t look sick" or "why are you always so tired" or "why are you always sick?" Why, why, why, I am sick to death of that question.

Earlier in my life I was a Susan Powter, groupie, I also tried Weight Watchers and Atkins as you can guess by those references I am over weight. My journey will begin in the early nineties, if your eyes get tired stop reading my story and go put some artificial tears in your eyes, close them and rest them. Come back and finish reading my story, if you do not, you will hurt my feelings and if by some chance you get bored, read the words any way!

In the summer of 1996, I decided it was time to do something about my weight. I bought a book by the newest lose weight guru of that time Susan Powter. If I remember correctly, she had a television exercise show, then again, my memory is not the best and I could be wrong. I do however remember following her diet and exercise advice. I got up faithfully every morning took James, that?s my son, to school came back home to get the dog, here name was Mandy, and went for a walk.

I remember Susan always marching to an invisible drummer, blowing in and out saying, "move people, breathe people" that was Susan?s greatest motto. I moved by walking and breathed deep, sucking breath until my stomach hugged my spine. The first week I began walking around the block, a week later two blocks eventually, I was walking 3 miles a day. I had reached the stage of power walking. I would walk hard and fast, swinging my hips left to right, like hooker-hips at a washing machine pace. I pumped my arms like a track star going for the gold.

After a while instead of getting stronger and having more energy, my body grew weak and more tired each day. I was loosing weight on a steady pace yet my life force seemed to be dropping along with the unwanted pounds.

All that breathing deep and heel to toe pavement work was literally killing me. I came down with infection after infection with 104-degree temperatures. Sleeping eight to ten hours, a night still left me feeling wrung out like an over used dish-rag. My doctor ran every test he could think of finding no results. The only reason he did not diagnose me as a hypochondriac was that my temperatures were consistently high along with other notable symptoms.

Sjogrens Syndrome is a symptomatic disease. Doctors will run test for years and not be able to find the root cause. Frustration then becomes second nature. It is difficult to stay upbeat when getting out of bed in the morning is a chore. When a person has to sit down while taking a shower or go lie down afterwards is not a normal circumstance.

My quality of life has suffered over these last twenty years. Being a single Mom with no emotional or financial support, I had a son to raise, therefore I had to work, oh yes work! I worked for the U.S. Postal service, which was no picnic even for a healthy person. Being sick all the time and calling off did not sit well with the job. In retrospect, these circumstances would not sit well with any employer.

Finally in 2004 Sjogrens tricked my body into attacking itself. I almost died. I spent 1 week in intensive care and 1 week in a regular hospital room. Still, doctors could not figure out why my body was shutting down.

Needless to say, I am alive sitting here writing this story. Sitting here wondering when and if there will be a break through. All I can say and believe is that we must continue to persevere.

Every day doctors are finding out more about this disease and are discovering medicines to improve the quality of our lives. One day, they may find a cure.

If anyone reading this knows of anyone who suffers from this disease or if you know someone who exhibits the symptoms, please be patient and understanding. The sufferer is truly suffering regardless of how they look.

For those of you who are suffering from this or any other disease please take gentle care of yourself.

Symptom recap:

· Dry eyes
· Dry mouth
· Dental cavities
· Fatigue
· Fever
· Enlarged parotid glands ? one particular set of your salivary glands, located behind your jaw and in front of your ears
· Difficulty swallowing or chewing
· Change in sense of taste
· Hoarseness
· Oral yeast infections, such as candidiasis
· Irritation and mild bleeding in your nose
· Skin rashes or dry skin
· Vaginal dryness
· Dry cough that doesn't produce sputum
· Joint pain, swelling and stiffness