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     A co-worker who has Lupus gave me a web site that led me here.  I did not have to wait as long as some of you to be diagnosed.  I was already seeing my Rheumatologist for osteo-arthritis and found a brochure in his waiting room and took it home.  I immediately recognized myself with Sjogren's symptoms.  I honestly don't remember when that was but I think I was about 53 years old.  I'm 63 now.

    I do not, at this point in my life, struggle with the overwhelming fatigue that so many with auto-immune have.  It may be because everyone's metabolism is different.  I am not the real high energy person who "is woman and can do it all" Ha! But I'm fairly active.  I work 2 1/2 days at our church in a preschool with 3 to 5 year olds and this is my 23rd year doing that.  Needless to say I love it.

    For myself, I can not use anything with fluoride in it because it immediately causes sores in my mouth which leads to a mouth fungus.  I have had it a number of times and I have to be real careful of having too much sugar.  I love chocolate.  I have always had a lot of cavities.  At this point I still have my teeth.  I've never had the glands swell like some of you.

    My situation is not quite as hard as some.  For my eyes, I have had plugs put in the tear ducts to help keep some of the natural tears in my eyes longer.  I finally had the tear ducts in my left eye and the upper lid of my right eye cauterized shut because the plugs would not stay in.  This is just done in the eye doctors office but by an ophthalmologist not someone from Sears.  Ha!  I also have to be real careful of my eyes so they do not get infected which I have had several times especially if I have a long or bad cold.

    My ears are dry and can be bothersome.  I just read that a little mineral oil in them will help.  I have not tried it yet.  I just bought some mineral oil today.  I was glad to hear about the effect of Sjogren's on hearing.  I was not aware of that.  I keep having my hearing tested mainly because of radiation treatments I have had.  I'm still good except I don't pick up on low sounds real good.  But I also have a family history of hearing loss.

    I use the Biotene products and the saline nose spray and the eye drops.  Not always the same brand.  I tried several of the artificial salivary sprays and they tasted so bad I couldn't use them.

    I have trouble with certain spices, and not able to eat too many fresh tomatoes from my garden.  We live in a fruit growing area and the acid in the fruit really burns so I can only have a little.  The canned fruit I can eat more of.

    Cancer in Sjogren's patients is only about 2 or 3 percent but I fall into that category.  In June 2001, I had my left parotid gland (where you get the mumps) removed and I have margin zone lymphoma.  After my surgery I had 23 low doses of radiation on my neck. I lost 20 lbs because it caused my throat to swell so much I could only get liquids down. The radiation treatments damaged my thyroid so now I have to take thyroid replacement medication.  It did not completely ruin it.

    In February of 2006, I had a tumor behind my left eye ball removed and again the same cancer.  I had 17 low dose radiation treatments on that.

     Then in June of 2006, we found a lymph node light up on the PET, and on a PET Scan in September, found two more small ones.  My Oncologist sent me to the University of Chicago to see a specialist who treats lymphoma all the time.  She said my cancer is directly related to my Sjogren's and I would continue to have it.  It is not curable but treatable and they expect me to have a normal life span and that some other kind of cancer or health
problem will be my demise.  They have an intravenous drug called Rituxan that is very successful in treating my kind of cancer and these latest spots could not be treated by radiation because of their location.  So we had it all planned to start those in January, after the holidays.   By that time I needed my regular PET scan check up and, "Praise the Lord" all three spots are gone.  To say my doctor was speechless would be an understatement.  He is not a believer like I am and I told him so many people had been praying for me.  But he was glad and said it made his day (mine too).

    I also have Raynaud's.  My Rheumotologist keeps checking me for Scleroderma.  I have not noticed any symptoms at this time.  I pray that I would be spared that.  I live in Michigan so the cold is something I need to be careful of.  I use New Skin, an over the counter liquid in a little amber bottle to put on my fingers when they split.  It is so comforting and helps them heal and keeps out infection.

    My biggest concern is so many of the different medical people who treat me have never heard of Sjogren's and I always mention it and give them a quick education.  It is very important for the anesthesiologist to know about it and dentists.  I have had a lot of co-operation with all I have dealt with.  I did meet one nurse who had it and she was so thrilled to meet someone else who had it.

    Thank you for letting me go on and on.  I have never had this opportunity before. Your web site is very nice.

Sincerely,
Marilyn

Story Copyright © 2007 Marilyn