I think it would be better if people embraced the idea of Undifferentiated Connective Tissue Disease if they have a simple +ANA. I think if all AI disease were combined, into CTD, we would get more research funding. I think people in the course of diagnosis would do better to have this diagnosis and be recognized as being ill, but, understanding that this condition can evolve.
SJS implies the dry eye syndrome...and it is getting to be the new default diagnosis. Sicca can be many things, and if Sicca is tagged Sjogren's the real diagnosis can't be reached.
Be open to having Small Fiber Neuropathy, and no AI disease if you don't have any AI markers....it's OK. Neuropathy is a real disease and they have a great forum.
If one has SSA and SSB and symptoms, then you have a classic case of Sjogren's. The rest of us, and most of us, I gather are in various states of AI disease and diagnosis, or have something all together different.
For me, the neuropathy has been quite disabling, but so has the Lyme Disease and the very severe high speed head on I was in, with my children, when they were 4 and 6. I consider myself a UCTD, since the lip biopsy is not enough to convince me....even if it convinced my doctor.
I don't feel I need to tell any one I have a specific AI disease. For those going for disability, yes, this is an issue. I haven't filed, but for those who are, expect AI disease to be a real nest of contention for disability.
Sure anger does have its place, but it has to be worked thru.
Venting is good...maybe we need one thread on venting....I have my days I need to vent.
Bad days are fine, we all have them. Long term anger and depression necessitate professional help.
On young moms and babies, it is difficult to see young people diagnosed with disease. I have several adult children dealing with very difficult medical conditions, far more difficult than mine.....and mine isn't good. They are living life, working jobs. One daughter has had 5 surgeries in 2 years....serious ones....and in that time, worked a job, finished a masters in engineering and qualifed for Boston Marathon....TWICE.
On babies, I have one here at home....7 months and I have him for at least 2 years, maybe life, who knows....yep, it is hard to get up and care for him....try doing it at 58 and in two weeks....doing it with a cast and pins. No one else can take him without undo hardship. Not to mention, I was sick way earlier in my life and dealt with 2 decades of this being in my head, I had to put my energy into my family....I could not even stop to think about being sick, other than taking 3 days off every two weeks from my duties, to have my migraine and puke. I did not have the luxury not to work, or not to deal with my kids and their lives, which in my book, were more important than mine.
AI disease is painful....it hurts...it makes you sick like you have the flu or drank too much....but, hopefully, we can live a near normal life span. One just has to adjust. There is no option but to adjust.
I think what makes this forum difficult for every one is some people see Sjogrens as dry eyes and dry mouth and can't comprehend what others with joint pain, neurological damage, organ damage are griping about....and the systemically affected can't understand why people with with lesser complaints are even on a forum to begin with, instead of out grasping every ounce of life.
I try to do this exercise now and then....Get up and NOT mention my disease, not once, not one reference to pain, aching etc...not log onto a forum, not google it...nada...just live life like I never heard of this. When I can do this several days per week....then I think I will be more mentally balanced. I will be living life, as it is meant to be.....even if I am sick. I have yet to succeed at this ONCE....but I am trying.
