I never would have thought that such a cruel disease existed and one with no cure. One that no one has even heard of, including even Dr.’s. The dryness that Sjögren’s gives me is nothing short of life-altering. I spend my days trying to comfort myself with constantly drinking but never feeling like I ever get to quench my thirst, always chewing gum, sucking on candies, spraying my mouth, mouth gels, brushing my teeth, looking at the clock to see if I can take another evoxac yet. Making sure my humidifier is on. Making sure the heat is down. Making sure I have all my supplies for my mouth when I leave my house. Just breathing irritates me. The air dries my throat out even more. I have to be very careful of what I eat. For example, no spicey food or anything carbonated because it makes my throat sore. I am plagued with chronic raw painful sore throats. All because of lack of saliva and lubrication. I never even thought of saliva until a couple years ago when this hit me. Now, it’s ALL I think about 24/7. It takes away from many moments that I should be enjoying but I can’t bc my mouth and throat bother me so much. I’m really worried for my future. I used to get excited about what’s to come. Not anymore. I am fearful. Sjogrens is progressive. I fear how much worse the dryness will get. I’m worried because there is no cure for all of us suffering from this horrible disabling disease. There are so many of us suffering and it’s like nobody cares! I’m in a Facebook group with over 7,000 people suffering. Some are just children! We need help!!! We need advancements in this area!! It’s so hard when you can’t escape yourself. What I wouldn’t give to just be normal again with saliva! Is that too much to ask?
I also have to deal with joint and muscle pain, fatigue, and depression too, as if the dryness isn’t enough to deal with! Not to mention being a mommy to my young kids.
I beg you to please research this area and find advancements and a cure for dryness and/or Sjögren’s.
Thank you ❤️️