Thank you for taking the time to read my story on Lynne's page.  I have read all the stories on here and I cried when I read most of them.  They were all done so beautifully.  With each story I learned a little more about how this disease affects each of us in different ways.  So now I will begin telling you my Sjogren's journey:

     I am 45 years old.  I have a 26 year old daughter and a 4 year old granddaughter.   I also have a boyfriend who is most understanding of me having Sjogren's along with my family.  I thank God I am fortunate to have people who understand and care.

     I was diagnosed with Sjogren's about 3 1/2 years ago with a lip biopsy.  I had been having medical problems for a long time though and after reading more about Sjogren's I believe I may have had it since the age of 19.

     I was always very healthy until I became pregnant.  During my pregnancy I developed a lung problem and had only 28% of my lung capacity.  I was sent to a specialist who advised me to get an abortion at 6 months into my pregnancy.  He said he never saw a case such as mine.  I told him no way.  I was bedridden the rest of my pregnancy and whispered because talking made me out of breath.  I used to have to go once a week an hour drive away to get blood gases drawn to make sure the baby was getting enough oxygen.  She was.  In the beginning of my 8th month I got toxemia (eclampsia) and went into convulsions at home.  My parents called an ambulance and on the way to the hospital I had another one and a last one at the hospital.  No one knew I had toxemia until this time.  The doctors did not think the baby would live nor I , but we showed them.  I had a healthy girl and after the pregnancy my lung capacity got slowly better.  It is now almost normal.

     A year after her birth I developed a big cyst on my right ovary.  They had to remove my ovary and then within a year they had to remove everything else because my other ovary was full of cysts.  All benign.  Thank God.  So at the age of 22 I had had a complete hysterectomy/oopherectomy.  I got better until about a year later and started feeling pain in my lower left side.  To make a long story short I had adhesions (scar tissue ) that had wrapped around my intestines and had to have surgery once again.  In a time frame of the next 12 years I had a total of 5 adhesion removals.  After this I got better for some time.  Then about 6 years ago I started getting walking pneumonia a lot and would go on antibiotics and steroid injections about four times a year.  I dealt with that pretty well.

     Around seven years ago the really bad problems started.  I started getting severe headaches on the left side of my head and was put in the hospital to rule out vasculitis of the blood vessels to the brain.  My sedimentation rate was elevated, but I did not have vasculitis.  I was sent to neurologists, psychiatrists, and a rheumatologist.  I was then told by a rheumatologist that I had fibromyalgia.  The headaches slowly went away.  Thank goodness!  They have never come back.  I have been following up with my rheumatologist since then.  In these last seven years many things have happened to me.  I became depressed, allergic to any antidepressant they tried on me.  I was scared because I felt more was wrong.  I lost weight from 118 to as low as 97 and now 114 lbs.  I am 5'5".  I started seeing a neuropsycologist who is great and she is the one who helped me tremendously. Now I see a psycologist who also is wonderful and I have stopped seeing the neuro.  

     As things progressed, I got joint pain, fatigue, and landed in the hospital a year and half ago with mononucleosis.  Right before that I found out I had malignant melanoma on my chest from a mole.  Stage 2.  It was removed and I am fine from that.  During this whole period I almost lost my mind.  I kept my faith in God and started a journal.  My rheumatologist finally told me he wanted to do a lip biopsy and I asked why?  The rest is history.  I had it done and it was a 4 on a scale of 0-4.  

     I had a cleaning business of 10 years that I slowly lost because of the chronic fatigue and  now I am on disability.  That has been very hard for me because I am a go getter.  I used to emcee Karaoke also.  Now if I go out to sing I usually suffer for a day or two with a bad sore throat.

     I also developed a tumor in my right lower side and they found it almost two years ago..they thought for sure it was cancerous. I ended up having major surgery at a teaching hospital on September 11, 2001 of all days, but God was good to me as it was only a lipoma tumor. It took a long time to recuperate from the surgery and I had a relapse and had to be re-hospitalized. My doctor puts me in the hospital about three times a year for IV hydration because I dehydrate so easily even when drinking quite a bit of water. Also 6 months after the surgery I had to have another small lump removed from the abdomen. I just had another abdominal lipoma removed in my doctors office in June of 2003 and have yet another one to go.

     We all have our loads to carry and I believe the three most important things in my life are God, family, and friends.  Also I love helping other people.  Some days I want to give up, but know I cannot because as a friend recently told me, "We all have our lessons to learn" and maybe Sjogren's is mine and I can help other people become knowledgeable on it.  

     Thank you for reading my story and please feel free to e-mail me.  I want to thank Lynne for having this web-site and all who have shared their stories.

God Bless You!

Melody