I was diagnosed about a year ago with sjogrens after I started to complain of dry eye. The docotr did some bloodwork just to rule things out and bammm I have sjogrens. They assured me that since I was young and healthy that I would be fine for years. I had a few minor days of pain and all was ok until March 2008. I started with extreme pain and fatigue. I thought I was going insane until I started to do some research on line and went back to the docs. Almost all of the info seems to point to disability and just coping. Are my dreams of returning to my career as a teacher and being an active part of my own children's lives over? I am meeting with a new specialist tomorrow and I'm sure he'll have some suggestions for me, but I wanted to hear from the "experts" -those of you who are living with this everyday.
I think this is a really good question. I was diagnosed with Sjogren's last May. I ended up quitting my part-time job and discontinued taking college classes that I was hoping would lead to a new career in healthcare. The stress from my scheduled only added to my fatigue and joint pain. I just couldn't keep it up. Since then I have been focusing on my health and getting a grip on my condition. I have talked to a few others with auto-immune diseases and the advice I keep getting is to find a home-based job. So that's what I'm working on now, trying to find something that will allow me my own hours so I can work when I have the energy and rest when I don't.
I also have concerns about how my condition will affect my plans to have kids. Will I have the energy? Can I even have kids safely? I know I will be a high risk pregnancy and that Sjogren's patients tend to have a marker that can cause heart defects in their babies. It's just so overwhelming. I'm just trying to take things a day at a time and in moderation.
I too would like to hear from others on this subject. Thanks!
Thank you very much for responding. I was beginning to think that I was the only one who was have a conflict between Sjogrens and my career. My docs keep saying work when you can. This would be great if I wasn't a Kindergarten teacher.
As for having children -I asked lots of questions about this when I was first getting diagnosed. I was told that lots of women have babies with my condition, but I would need to go through extreme genetic counseling. Well I have already been blessed with two gorgeous children, so when the hell of Sjogrens made me unable to care for them the way I want I quickly realized my pregnancy day were over. I would have to say that disappointing my children is the worst part of this illness. There are days when I simply can not be the mom that they are used to. My husband is amazing with the kids, but there are some things that mommy is needed for.
If you truly want to have children I would go for the genetic counseling and find out how this would effect the children physically. You will need lots of help, but children are a true blessing and are worth every second of pain and agony that may be added to your body during the pregnancy.
My rheumatologist said that a child could be born with heart defects, but he did not go into details. A genetic counselor would probably be your best bet for that info. Just to warn you though, they are not sympathetis people and will flash lots of scary statistics at you. Make sure you take another person with you to write down facts they throw at you so that you can go over the info at home later.
Thank you for your reply about heart defects! It helped me to ask appropriate questions of my doctor and get information specific to me (I was curious because my own heart has been affected by Sjogrens and was wondering not only if I got that from my parents somehow, but also what that was going to mean for my heart issues going forward). Alas that was not the case (well, I probably still got the Sjogrens from my dad as he has similar issues) but the heart defects caused by Sjogrens apparently become obvious (and urgent) in the first year of life. Given my age (44), I'd say I am a whee bit out of the danger zone there. ; )
I am having a difficult time finding much else on heart issues with Sjogrens so perhaps that is just a mere coincidence for me. I would love to hear if anyone else with Sjogrens has heart issues.
Oh and to answer your original question, I am not able to work either... not full-time or part-time. I was a corporate executive before this (you know the drill... 70 hour work weeks, etc.) but now the fatigue, heart issues and extreme double vision (all of the extraglandular issues really) prevent me from counting on any sort of regular shedule. Some days I can get by for a good 4 or 5 hours if I rest lots, but some days I am just lucky to be breathing. I am trying everything I can to improve my condition (taking the suggested medications, supplementing with alternative therapies, working out as much as possible to keep my muscles strong, doing yoga, meditating, going to church, getting a little sunlight every day, eating healthy, getting my electrolytes in, keeping up on the health boards for suggestions from veterans here, you name it) but it is still early (recent diagnosis). I don't even know how one with an autoimmune disease can find the strength or focus to develop (or get the training for) a home based job!