Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
When I got the arthritis in my hands and feet, I got use to it, and kept going. Then I got dry eyes. Take Restasis and put gel in them every night. Dealing with that. Saliva drying up. Drinking lots of water. Now I have this chronic sinus thing that makes it difficult for me to breathe. I feel winded all the time and exercising makes me exhausted. I'm feeling a lot of loss over the course of 4 years. Just wondering how much more I have to lose.
i had to retire from my job in 2010 a career i loved and then in may 2012 i lost my son....the loss of my heath seems small now.....
i dont tempt fate now because i know it can always get worse!
i have been struggling as my son's 1st heaven birthday rolls around i am dreading may 17th.....it is a struggle to look at what i have and be grateful rather than to mourn all that i have lost.....often times i need a reminder ...
it's like i told my internist when i saw him last week....i am doing everything i know how to get through the grief...i attend a weekly grief group try to keep positive i started art thearpy, i get a 90 min massage weekly, all to help relieve the stress....but i have been struggling with may 17th approaching...i told him for people that live with chronic disease (i have CVID immune def...sjogren's is secondary) it is difficult enough to stay optimist, but without a glass is half full attitude we too often get swallowed up in our disease.....
so vent away but just remember for those of us living with chronic disease we do have to be careful so we dont become our disease....
HUGS hope you are feeling better....
I try not to look too far down the road as to what could happen to me in the future...after all what could happen might not happen and then I would have spent so much time worrying.
Like pcon, I have CVID. Folks with CVID have a 50% (correct me if I remembered that wrong pcon) of getting Myleoma than the general public. I asked my Immunologist about this and he said "Will you get cancer? Probably, but you might be 91 when it happens. Until then you have screenings and blood work etc....every 3 months"
So, now I try to apply his attitude toward my life. I try not to borrow trouble, I know If I keep up with my regular blood work early detection will be my best friend, and once in awhile I hop on the couch with a big bowl of Mint Chocolate Chip :)
Are you on any medications?
I have several symptoms and medical issues - anemia, shortness of breath, spleen pain, dry eyes, mouth, dental issues, arthritic type pain, etc., etc, etc.so I empathize with you, I do,
My rheumy started me on plaquenil about four months ago now - it is just starting to kick in and takes some of the arthritic pain away. I know many folks do not want to take medications and I used to be like this myself, but for me, now, at this point in my life, I feel I need to be comfortable and do what I can to try to live a more meaninful life.
Having sjogrens is tough and offers many challenges that I would not wish on anyone...I hope you can find some relief.