I honestly feel like I'm always sick. Earaches, swollen glands, sore throat, headaches, and even the occasional cough. I have swelling of my parotids on a daily basis, but then there is SWELLING. I have honestly been on antibiotics for 2 weeks. NO RELIEF! The doctors assure me that my immune system is fine. I don't WANT to be sick. This is the only place I can vent my frustrations. My husband as wonderful as he is has got to be sick of hearing I'm not feeling well. My poor kids (10 and 11 years old) have got to be sick of hearing that mommy is in bed again! Is anyone else having these kinds of issues with fighting something that is supposedly not there?
I feel like I'm always sick too. If I haven't caught the latest thing going around, it's migraines, or SjS flaring and I cough every single day. Some days it's better than others, but yep - I'm really tired of being so sick and tired!
You are not alone in this - I feel the same and feel guilty for often telling my 10 year old boy Mommy isn't feeling well, again. He is great about it and sometimes takes care of Mommy. He'll get me tea or juice, a blanket, and gives great hugs. Then he'll say, OK - are you better now? I wish it was that simple, but the extra love helps!
Good luck and God bless,
KellyG
Yep, I am sick of being sick. I just can't bombard my family and friends with how I am feeling all the time. It is over whelming for them.
It's like this is my new lifestyle. I guess in a way it is. Is it like the "new normal" ?
I put forth an effort to adjust a little each day. Hope that all of you do too.
Duchess
I too always feel this way. It is my new normal. :'(
I'm better than I was a year ago & even though I'm thankful for that it's still hard to adjust to feeling crappy every day!
Carie
I can totally relate. The other day my brother took us to a new thai place he really liked, I, of course got diarrhea. Everyone else was fine. I mentioned that something I had eaten gave me a stomach ache and he responded with "Well you're always sick anyway." I don't talk about feeling bad, and I do the best I can to be out and part of things with my family and my kids. It's just really frustrating sometimes.
When I told my mom about the diagnosis, she said "You never have had an immune system anyway." I told her that yes I did, actually, it just hated me. :) My husband is great as well, but I know this is hard on him too. Today he has caught my cold, and he feels really rotten but, he was ready to get up and go pick up our son. I told him that I could do it and he said "how do you do it? I know you feel lousy pretty much everyday." He's a good guy.
Oh well, gotta keep laughing I guess... And counting all the good things in our lives.
Our immune system isn't on holiday, it is on overdrive and the term autoimmune refers to the fact that our body is working overtime to produce antibodies to kill us off. In the case of the sjoggie the body is producing antibodies to kill off the secreting glands. These glands include the oneson our face and under our chin. These glands swell up with white cells when our immune system is overproducing the antibodies. This is what causes the swelling and pain.
You can only place so many white cells in a certain area and when our glands get full they swell up, and up, and up. They get painful and they get infected from the saliva not being able to drain properly. Also, the saliva we make isn't normal but thick and doesn't have the normal enzymes and chemicals that fight off infections.
For those sore, swollen glands try heat or rice bags and drink lots of fluids. Massage the glands after the heat has been applied. If you massage the glands gently and around the face you help to stimulate the saliva to drain more easily. If you can keep things moving along the infections don't occur as often. The swelling doesn't always mean infection. Sometimes it is hard to tell when there is infection in the glands.
However, if you have pain in your glands and face, chillls, fever, etc and feel pretty lousy, chances are there is infection. Remember that with sjogrens we pretty much feel like we have a case of the flu every day. Some days are worse than others. Ask your docs about starting plaquenil to help get the autoimmune attack ono the body under control.
If the plaquenil doesn't help and things are getting worse then it is time for the stronger medications like the methyltrexate or imuran. I laid around a whole lot when I was raising a family. I also worked part time and had a garden, etc. Life sort of flows and ebbs with autoimmune and you do what you can when you can. It doesn't always go the way your want, but somehow things just keep moving on. If you have kids that can help then they can have chore assignments to help out. They won't die from it and they will learn a lesson about life. Good luck. irish ;D
Thanks everyone. I am not happy you are all having the same issues, but am glad that you are sharing your stories that I am not alone. I do have a question though. I sleep (normally) on my lft side and find in the morning that my left parotid is swollen twice the side of my right. Does anyone know if this is connected?
It may be a drainage issue. One way to find out is try to sleep on your right side and see what happens.