Been reading everyone's posts. It's difficult not to let this all get you down.
Just read a post about lung problems, which I know I have. I'm always saying to myself, if I didn't know better I'd swear I have Cystic Fibrosis. Wet cough and constant mucus in my throat. It feels like it's choking me at times.
Dry eyes, but so much worse is the dry mouth. Terrified to be without water or gum. Rheumy prescribed a pill for dry mouth but it didn't work for me. Temporary sprays don't do much. Can't eat without a sip of liquid after each bite.
I have high blood pressure, (although controlled with meds) and recently took a stress test. Dr. said I failed it. Now have to do the neuclear stress test. Is it SJs or is it something else.
Then there is the fatigue.
I know things could be much worse. I work with two women, one just diagnosed with MS, and the other breast cancer. Have to keep things in perspective.
Need to vent every so often.
Thanks for listening.
Can you take Mucinex 12 hour? That works well for the dry mouth and does not contain the same ingredients as sinus medications, which I know you cannot have. Call your doctor. I have had SS for 30 years, and I have done well for most of that time. A series of events came together to give me this bad latest flare, but I am better than what it was. Just because things are miserable now, does not mean they cannot or will not improve, wax and wane. DO vent. It helps, plus everyone has such helpful suggestions.
Never thought about Mucinex. Never took it. I will give it a try.
Thanks for your suggestions. Very much appreciated!
I use a lot of sugar free candies. My favorite is Brachs sugar free cinnamon discs, but they are hard to find, sometimes. Most people swear by sugar free lemon candies, and they help in the same way as the cinnamon. I still prefer cinnamon. If I drank as much water as I need to in order to stay moist, I would be in the lady's room constantly...............well, I'm middle aged, so I am there a lot, anyway!!
I know, I think it gets us all sometimes, especially if we are feeling poorly, exhausted, or are sad for others who are unwell.
I was just starting to feel about as good as I can, and BAM, the flu hit, could not keep down oral meds, had to stop the Humira shot, so then add cold turkey, and other health worries with husband, not sleeping... and it's easy to get there. BUT I know it will spring back up, maybe not get to the same height, but will improve.
Gotta laugh and love as much as we can, those are the things that can get us through, and sleep, gotta have the sleep!
Sending some love your way,
Forgive me everyone, for it has been a long while since I have gotten on. But I noticed I was receiving a lot of emails referring to lung issues. This is my main problem! With no answers or help from all the drs. I feel like I am on a long roller coaster ride. No one will listen when I say, this is not asthma! It feels different. All of sudden I just get so winded, like the air has been knocked out of me. The mildest thing can trigger it too. This last episode left me so fatigued I couldn't even lift my head. I have seen my primary dr. three pulmonologist, an allergist who ran all the basic allergy tests, and my ra dr who is in charge of my SJ and fibro.I am about to lose my mind here. So Connie? I hear you, I feel for you, and I, like some of the others on here, refuse to give in, give up, and try my best to live my life on the days I am blessed to do so. As for Mucinex 12 hour? Thank you Bookgeek, I am going to run out and get some today, as the mucus buildup is just the worst. I pray it helps me as much as it helps you. Haha, to add some humor to the day, we should be called The Hang In There Club!
Hi Connie. I know how frustrating this whole thing can be. Its a good thing if you were cleared by the pulminologist. That means no scarring on the lungs, which SS can cause. I think the suggestions the others put forward are good ones. I hope they help for you. Sometimes massaging the salivary glands helps too. Are you on any meds for the fatigue? Things like fatigue seem to come in waves so rest when you need to and know that it will pass. Sending hugs!
The pulmonologist is probably a good idea. Never thought of that.
I am feeling better.......and appreciate your kind words.
Glad there is place for all of us to vent. Sometimes that is what we need, a safe place where others understand.