I think that if we would contact the Sjogrens Foundation we could get help in setting up a support group ourselves. I think that there are probably some hoops to go through, but if we could find another person to help us it would be easier.
In my town there is only a M.S. Support group and I have been there a couple of times. It meets monthly at the hospital and is run by a gal that I have known for years. She says that anyone with a chronic disease is welcome to come.
I have also thought about going to a "caretakers" group. This is a group in town for people who care for an ill spouse. Since I do it all of the time at different levels of care I figured I must qualify. There is no way my hubby would go as he would also qualify as he has had to take care of me too.
I also have been wanting to go to the diabetic inservice that is held every other month at the hospital. They have doctors come in and talk, etc. Anyway, I don't know about the rest of you but it seems like whenever I plan to go to something and really want to go I end up sick. The other thing is that many of the meetings end up when I am gone for my infusion.
I think that it was very interesting that someone (excuse me I forgot who) said that chronically ill people need to get out and vent with people other than their own family/spouse, etc. This really does make sense. I have been saying for a long time that this site has saved many marriages as it defuses our frustration by allowing us to vent with others who understand.
I know that it is really hard to be objective with our spouses. We sit and stew and think bad things about them because they "don't pay attention to us or understand us" etc and the thoughts and feelings go on and on. I have been at that point this fall and early winter and I think it is part of burnout from chronic illness.
We really need to get out and away from our disease and how in the heck do we do that. We don't have the energy, souses have to work and the money issue is a very important one also. We are all financially strapped from being sick. I am on my hubbies trail to think of something we can do that would have nothing to do with the medical world.
This is pathetic, but true. When we drove to the cities last week for my appt I was thinking about how we could drive any direction and find a clinic/hospital/Imaging center that one or both of us had gone to. I had hardly ever gone to the cities and now I am learning the roads and even starting to know where the stores are in many different suburbs. I have been to Walmarts in many counties in Minnesota. Pathetic way to have spent the past 20 years. My doctors even run in the same circles. No wonder we are all frustrated. We see more of our doctors than we do our friends.
Can anyone please think of something inexpensive that we could do with our spouse that would not poop us out and would help us get some relief from this daily insult!!! Thanks to all of you. Irish
