| This is about me, a person who has lived with a | | | | saying, "move people, breathe people" that was |
| disease. I am a person who had a dream of realizing | | | | Susan?s greatest motto. I moved by walking and |
| self-potential yet, had to accept not physically being | | | | breathed deep, sucking breath until my stomach |
| able to manifest this dream.As I stated in an earlier | | | | hugged my spine. The first week I began walking |
| article, Sjogrens is an autoimmune disease, a | | | | around the block, a week later two blocks eventually, |
| connective tissue disease. The medical community | | | | I was walking 3 miles a day. I had reached the stage |
| has not found a cure.I had never heard of Sjogrens | | | | of power walking. I would walk hard and fast, |
| Syndrome until April of 2004 when death came to | | | | swinging my hips left to right, like hooker-hips at a |
| visit and tried to take me back with it.Most of us are | | | | washing machine pace. I pumped my arms like a |
| familiar with the high profile diseases -- MS, | | | | track star going for the gold.After a while instead of |
| Rheumatoid Arthritis, and Lupus etc. Let me preface | | | | getting stronger and having more energy, my body |
| this story by saying I am not a doctor, I am not an | | | | grew weak and more tired each day. I was loosing |
| expert I am a patient diagnosed with Sjogrens, I will | | | | weight on a steady pace yet my life force seemed |
| call it SJS. Technicality is not my forte and this literary | | | | to be dropping along with the unwanted pounds.All |
| journey is in layman's miles, not always logical, never | | | | that breathing deep and heel to toe pavement work |
| the less just as valuable for those who live and feel | | | | was literally killing me. I came down with infection |
| the effects of this alien that has invaded our | | | | after infection with 104-degree temperatures. |
| bodies.Are there any Trekkies out there? SJS, like | | | | Sleeping eight to ten hours, a night still left me feeling |
| any other disease is akin to the unrelenting nemesis | | | | wrung out like an over used dish-rag. My doctor ran |
| the Borg of Star Trek. This autoimmune disease | | | | every test he could think of finding no results. The |
| occupies our bodies threatening assimilation of | | | | only reason he did not diagnose me as a |
| different organs and body systems. At times, I think | | | | hypochondriac was that my temperatures were |
| I can hear it whispering, "Resistance is futile".SJS is | | | | consistently high along with other notable |
| different in each person that it tries to assimilate. In | | | | symptoms.Sjogrens Syndrome is a symptomatic |
| my case the symptoms are: aching muscles, | | | | disease. Doctors will run test for years and not be |
| debilitating fatigue, dry aching eyes, dry mouth, | | | | able to find the root cause. Frustration then becomes |
| pancreantitus (which led to diabetes), painful legs and | | | | second nature. It is difficult to stay upbeat when |
| feet, neuropathy, and depression. Writing this is | | | | getting out of bed in the morning is a chore. When a |
| therapeutic, and hopefully, it will help those who | | | | person has to sit down while taking a shower or go |
| suffer from the same alien, or any other alien for | | | | lie down afterwards is not a normal circumstance.My |
| that matter, to not feel so alone.Those of us who | | | | quality of life has suffered over these last twenty |
| suffer from Sjogrens not only must live with the | | | | years. Being a single Mom with no emotional or |
| disease also must contend with friends and family | | | | financial support, I had a son to raise, therefore I had |
| who cannot comprehend what we are going through. | | | | to work, oh yes work! I worked for the U.S. Postal |
| We hear them say, "you don?t look sick" or "why | | | | service, which was no picnic even for a healthy |
| are you always so tired" or "why are you always | | | | person. Being sick all the time and calling off did not |
| sick?" Why, why, why, I am sick to death of that | | | | sit well with the job. In retrospect, these |
| question.Earlier in my life I was a Susan Powter, | | | | circumstances would not sit well with any |
| groupie, I also tried Weight Watchers and Atkins as | | | | employer.Finally in 2004 Sjogrens tricked my body |
| you can guess by those references I am over | | | | into attacking itself. I almost died. I spent 1 week in |
| weight. My journey will begin in the early nineties, if | | | | intensive care and 1 week in a regular hospital room. |
| your eyes get tired stop reading my story and go | | | | Still, doctors could not figure out why my body was |
| put some artificial tears in your eyes, close them and | | | | shutting down.Needless to say, I am alive sitting here |
| rest them. Come back and finish reading my story, if | | | | writing this story. Sitting here wondering when and if |
| you do not, you will hurt my feelings and if by some | | | | there will be a break through. All I can say and |
| chance you get bored, read the words any way!In | | | | believe is that we must continue to persevere.Every |
| the summer of 1996, I decided it was time to do | | | | day doctors are finding out more about this disease |
| something about my weight. I bought a book by the | | | | and are discovering medicines to improve the quality |
| newest lose weight guru of that time Susan Powter. | | | | of our lives. One day, they may find a cure.If anyone |
| If I remember correctly, she had a television exercise | | | | reading this knows of anyone who suffers from this |
| show, then again, my memory is not the best and I | | | | disease or if you know someone who exhibits the |
| could be wrong. I do however remember following | | | | symptoms, please be patient and understanding. The |
| her diet and exercise advice. I got up faithfully every | | | | sufferer is truly suffering regardless of how they |
| morning took James, that?s my son, to school came | | | | look.For those of you who are suffering from this or |
| back home to get the dog, here name was Mandy, | | | | any other disease please take gentle care of |
| and went for a walk.I remember Susan always | | | | yourself. |
| marching to an invisible drummer, blowing in and out | | | | |