Hi ALl:
I have been gone for some time getting tx for my depression. I am actually leaving for Arizona next week to go to a pain mgmt and depression clinic. I am scared of the dry weather but I know people with Sjogrens do it so I am going to give it the old college try.
I do have a question about intimacy and Sjogrens. I know it is a bit personal but I thought it was worth posting. I know there are all sorts of remedies for vaginal dryness but I am scared about the oral dryness. My mouth is unbearably dry and I can't ever imagine actually kissing a boy like this. I hate to think at age 27 I am never going to experience dating again and being loved. I would like to hear how others maintain relationships despite the dryness. Thanks!
When I was first diagnosed with Sjogrens, my mouth was so dry, it was hard to kiss my husband. I take Evoxac because of the severity of my dry mouth. I could not swallow food. After being on Evoxac for awhile, I can kiss him without my lips suffering. Also, I use Vitamin E stick from Walmart to moisturize my lips.
Hope this helps and good luck to you in your treatment.
Hi Kim;
So glad to hear from you!!! The pain mgmt and depression clinic sounds promising. Maybe you could take along a personal humidifier to use in your hotel room at the bedside table to help with the dryness. See http://www.amazon.com/Medisana-Deluxe-Personal-Humidifier-Eucalyptus/dp/B00142G7K0/ref=pd_bbs_sr_1?ie=UTF8&s=electronics&qid=1228000931&sr=8-1
Irish has a very good tip about taking a wet washcloth in a baggie along with you to hold over eyes or nose while traveling. I have done so and it was very comforting. If you are traveling by plane, you will have to check with the airline, of course.
Tranquil eyes are something you could take along to help with dry eyes also. See http://store.nexternal.com/shared/StoreFront/default.asp?CS=tdec&StoreType=BtoC&Count1=586208522&Count2=503348946&CategoryID=27&Target=products.asp
As an old married lady, I can tell you that I found out after we married, that my husband was not all that enthralled with kissing. I have a sneaking suspicion that most men are not all that thrilled about kissing, but, like dancing, will engage in said acitivity during courtship to please us. Guys, am I right?
You can experience love and dating, don't worry. My grandmother married a wonderful man after she was very crippled with arithritis and he took care of her for the rest of her life. It is all a matter of meeting the right person for you.
Hugs,
Sue
Hi Kim, good to hear from you
I'm so glad you are going on a pain management course and getting your depression under control (if that's the right word for it!) sounds like you're heading in the right direction.
As far as intimacy is concerned, yes it is important in a relationship but that said a really long cuddle can be just as intimate as full on sex if it's with the right person. I can understand your worries as you are so young, but with the right person they will not be as bad as you imagine. Honestly.
Wen x
Dear Kim,
One thing my husband explained to me a long time ago: "We are simple creatures."
Turns out, he doesn't care if I need a swig of water before he gets a kiss...so long as he gets his kiss.
If I were on a fist date (or any date) I would take a water bottle in my purse and and casually take it out for a couple sips as we are driving home (or a couple minutes before I anticipate we might kiss) and just keep chatting about whatever we are chatting about. You can keep it in your hand as long as you want. There is no need to talk about the water. Over the last 15 years or so, it has become socially acceptable to do this in public. A whole lot of people do this in business and social settings, I've even seen it in church!
You could also offer him a stick of (sugar free) gum and one for you (to go with your sips of water) to really get your "juices flowing."
As long as you act like it's no big deal he will think nothing of it.
In my married life I keep a bottle of water (refill it every morning) and bottle of Biotene mouth spray next to the bed....for any occasion.
As a fellow sufferer of Depression I know a little worry like this can grow to a huge fear over time. I promise this is not something a man cares about. His eye is on the "Booty" (no pun intended). He will not care if you grab a little slather before he gets his prize.
I hope this helps, and I hope I didn't offend anyone...sometimes we just gotta say it like it is!
Kimmy honey, I wish for your trip to banish the "depression dragon" and soothe your pain!
Janna
Good luck here in the Valley. Dont worry too much about the dryness, it's been considerably wetter than usual lately (and man does that help!).
I hope things work out for you.
Living in Tucson is dryer then most places. I use a humidifier by bed. Most folks well or not keep a water bottle buy the bed. The bonus, you will find that because it is dry and warm your aches and pains should be less. Come on out here and heal. Don't forget to get out and see the desert it is a wonderful place to go for a walk and to enjoy life.
Depression is a common when you have a chronic disease. You are being proactive to seek treatment. Good for you!
There are many vaginal lubes that you need to explore the possibilities. Some are fun and adds spice to a relationship. Even good old Walgreen's has a good selection, it is with the condoms display. Another option if you don't want to go to a store there is a toy store for adults called good vibrations. They have a good selection. Goodvibrations.com. Don't be put off by their other things remember that you are going to this sight for a reason and can ignore the rest. Must admit it is an eye opener even for this old lady
If you are coming to Tucson maybe we can hook up with each other, send me a private E mail with details.
Good luck!
Hi I live here in Az too. The weather's great! I feel awesome right now. You'll have an amazing time ;)
When they say "dry" they are generally referring to the lower humidity level in the Summer.
It would be great if you could see my rheumotologist while you're here 8)
Hi K!
I met my boyfriend back 8 years ago and had to keep drinking water - now there is cool stuff our there like that biotine spray, or biotine mouth gel (don't rinse out) and bottled water is en vogue ;)
If a person really likes you they don't mind and I love how Janna put it too!
My guy even said in response to my dry mouth he could "Gleek" since he was in grade school - which is squirting the salivary glands under your tongue - like a squirtgun.
I laughed and remembered the boys doing that at my school. He tried to teach me but I never could.
There's always "I'm a bit nervous" dry mouth anyway. :D
Or to be coy and say they are ways around it - and sip out of your water bottle etc :)
My best pal is in AZ right now visiting from Nor Cal and says AZ is so comfy right now.
I'm SO glad YOU are taking care of yourself with pain management and depression!
I mean it. It is hard not to do opposite action when you feel bad.
Best o' luck and good thoughts to go with ya,
Paperdoll
Since my mouth often feels glunky Im always worried that my breath may be bad.
Steve
Kim I hope life is better for you -
Me too, Kim.
I find myself thinking about you during the day and wishing you to be feeling better.
Too bad Kim has not been able to get back here and tell us how she's doing, and hopefully reads all the good wishes. I realize she may be in AZ or on her way. We hope you are doing ok, Kim. Lucy ;)
Kim my SJS flared badly, and I was diagnosed, after the menopause. I had always found being intimate a bit uncomfortable (even a little painful at times) and I am sure that was because of dryness. I use orthogynest which is a cream you put in overnight (not exactly sexy) but I am sure there are other vaginal lubricants that would be more fun to use. I have been married for 36 years and I worry that my husband misses intimacy in the way we used to experience it but if someone really loves you they love you for all sorts of reasons and not just the physical. It's rotten that you have to worry about this when you are so young.
I hope your time in Arizona is a positive one.
Beverley
Hi Beverely
I use the orthogynest too, alongside Replens and washing intimate areas with water and E45 cream. It makes things a lot more manageable ;)
Kathyx