Ok I have following and reading for a while and didn’t think I would write but here goes… A year ago I thought I would start a Sjogrens support group here in western MI but I have been feeling so awful I don’t think I have the energy. As I understand it there has to be a two year commitment and can’t look that far a head. I am 60 year old and have had it for about 7 years,
My issues:
Sinus infections and I use a hydra pump with solution once a day and sometime two times if I feel like I might be getting something. Sometimes it help some times it doesn’t. I always seem to have mucus hanging in my throat.
I have used refresh, systane vials along with gel and ointment several times a day. Am thinking of resistastis but have not done that yet. Any thoughts from anyone?
Vaginal issues. Very dry and use a moisturizer which helps a little but no intercourse.
Teeth…I have had so much trouble with teeth. Most are fake and now replacing some due to pieces coming off the crowns. I use a fluoride treatment at night from the dentist.
My husband is patient but I am not. I want the last of my life to mean something and feel too exhausted doing things. I babysit my wonderful gKIDS but am tired afterward.
I have not told ANTONE all these issues because I don’t want to be a complainer. I hold on to that God has made us fearfully and wonderfully.
Yes, a 2 year commitment is a big one, I know the work involved in just being a volunteer moderator here on the internet! So to be there in person at a set time for that period of time is an even bigger one, but I admire the fact that you even considered it!
Restasis seems to help many people with Sjogren's dry eye, but it did not work well for me, the burn just never went away, but I'm glad I tried it! There are some new dry eye treatments in the works, I'll see if I can get those up for you.
I have my grand kids with me sometimes too, my 11 year old just spent 9 days with us, and tired only begins to cover how I feel! LOL! I love almost every minute of it, but surely don't have the physical endurance for much any more!
Teeth, I have 7 left! I have a full upper and partial lower. I have suffered dry mouth and tooth loss for decades, never once attributed it to disease, until diagnosed about 8 or 9 years ago. Little did I know...
I really don't feel that you are a complainer, Atina, you are simply stating what is happening with you, and how you are coping. You are throwing things out for a response, for understanding, support and information. Again, I'm glad you posted and are taking part in the group! Welcome to the boards!
Atina...So wonderful that you want to organize a support group, but I understand the difficulties. The same thing happened to me re: a support group. One is very much needed in my city. I spoke to a woman who was interested, but I don't think she feels well enough. So, I thought about it for myself and then I realized that I really have the same problem. It is very frustrating. Perhaps two partners that can share in the responsibilities...one filling in the for the other if they are too sick. We had a person list herself for support in our area. She never had a meeting, but would answer questions. That alone was very helpful to me at the beginning. Coming here has been very helpful too. You are right, support is soooo needed!
Katina: What is a hydra pump and what is in it? I am doing better with sinus infections, but my husband had a cold and I got one the other day.
I think I'm doing better because I'm doing a lot of the stuff Kaz and others suggested! (thank you guys!)
Kaz: Do you recommend nasal rinses? I have neilmed. Is there anything extra that can be done if you are around someone with a cold???? My husband had a cold and the next thing I know, I have a sinus infection. BUT, I have been doing overall better with this.
Went to the doctor yesterday and he recommended Osphena for vaginal dryness. It is new. An estrogen antagonist ??????? Not sure what I heard. Any thoughts?
Don't look at this as complaining. You are sharing. Up until several months ago, I didn't know that SS was causing all of this mucus in my throat. It truly is disgusting. As for my teeth.....yes, I knew my mouth was dry, and that could cause decay, but never dreamed it was SS. Over the past 10 years I've had four root canals, six crowns, and on Monday I'm taking a huge step. I'm having my four front top teeth veneered. They have been breaking off and the bonding will no longer hold. I'm terrified, but don't know what else to do. I've been, like so many of you, suffering in silence. Probably the past thirty years with all of these symtoms. I'm now 68, and just diagnosed in April.
I have found the participants in this website to be truly amazing. They bring to the table so much valuable information.