A Little History

Monday, January 24, 2011

After years of one health problem and another, I was diagnosed with Lupus & Sjogren's disease.  My husband & I were saddened to know that I had an autoimmune disease, but grateful to know what it was and that we could deal with it.  I had found a terrific rhuematologist who prescribed prednisone and plaquinil.  I was on these meds for some years, when he added methotrexate and took me off the plaquinil. 

I work out twice a week with a personal trainer and have been doing that since years before my diagnosis.  I added "gentle" yoga to my weekly routines about a year and a half ago.

Since late summer I've not been feeling very well.  I've had more bouts of pain than ever before and more days using a cane to aid in walking.  I ceased doing some hip exercises my doctor had recommended as they seemed to make the pain in my hip joint worse.  Each morning and evening I have a couple of shoulder exercises I do.  Just after the new year I got in to see my rhuematologist with my list of complaints.  He felt that my current meds were not working for me anymore.  To make a couple of weeks of a long story shorter, my doctor recommended that I go with the infusion drug Rituxan.  He told me all the possible side effects and scared the wits out of me.  One infusion is $10,000.00 and I would start with one and then two weeks later have another.  I'm not really certain about subsequent infusions.  I still have to talk more to my doctor about all of this.

In the meantime after talking with my husband and children, I have decided to try a month of "organics".  It started Saturday evening and I need all the encouragement possible to stay on track.  I want to see if going organic with all of my foods can make a significant difference in how I feel.  I've read many times, many places over the years that food additives, preservatives, chemicals, etc. trigger Lupus flares.  I know I can not use artificial sweeteners.  God, they are BAD!!!  They really make you hurt.  So this is a start.  I'm not quite ready for the Rituxan.

I have heard two good reviews of the Rituxan which have helped to ease my fears.  My massage therapist told me a couple of days ago that her father credits being alive with Rituxan.  He had non-Hodgkins lymphoma and was on it for 6 months.  He has been in remission for several years.  That's a good story.

My son, Adam, checked with a Doctor of Pharmacy who told him it is the closest thing to a "miracle" drug.  That's a good thing.

Last week Monday was a cane day.  Really painful.
Tuesday was a "slow walking with a limp" day.  Painful.
Not a day goes by without some pain in various places. 
I have dry eyes.  I use Restasis.  I have dry throat.  I have stomach problems due to the Sjogren's and how it drys you out.

If anyone knows anything about Lupus or Sjogren's, please share.  I don't currently belong to a support group, but would like to.