For the last couple of months I have felt pretty dang awesome. I've had energy and been able to drive and garden and mop and clean the bathtub and hike up and down the basement stairs to get ALL of the laundry done. I've been able to ride my bike and walk and get groceries (albeit leaning on a cart at the grocery store) and sit on the floor playing Barbies with my granddaughter and climb into a picnic table and so many other things I can't think of right now. (Yeah, my memory is as crappy as ever.) And throughout all this I've been having one helluva mouth flare that just doesn't want to go away. I called my doc, whom I've been seeing for about 15 years, for Nystatin which usually works well for me but not this time. (But before I was given it, the nurse called me to say the doc wanted to know my symptoms. Are you frigging kidding me? You know, we have met!) I know...CYA. But really.
Anyway my point is that there always seems to be a trade off. If my mouth is ok my hips hurt, or if my hips are ok my back hurts and so on ad infinitum.
I've never tested positive for Sjogrens but I have it. I had a lip biopsy 4 months ago and my lip is still numb. I take Pilocarpine 3 times a day and I can spit for about an hour afterwards on a good day. I've seriously contemplated having my water bottle surgically attached to my hip because I live in such fear of being without it. (And I would then like to figure out a way to have it dowse my eyes as I chug.) Biotene toothpaste was such a godsend...so of course they changed the formula and now it burns like s**t and they won't tell us why. Sometimes my back/hips/knees/head/shoulders/neck/whole entire body hurt so much that I'd kill for some pain relievers from the 70's. I wish the chair I fall asleep in was made of memory foam so when I nod off from exhaustion I wouldn't get a stiff neck. I have no cavities but my teeth crack and fall apart in chunks. I get very depressed sometimes when I realize I have this disease for the long haul. I really miss salsa.
I have no questions and no answers to speak of. I hadn't checked in for awhile to see what was what and figured it was time to do so. I feel better just getting a good ramble on and, if nothing else, I hope I provided a bit of entertainment.
Prayers, love, hugs, thanks and peace to all of you wonderful people who give me a place to go! I really, really miss salsa.
Hey Lovely….good to see you here. You have me laughing and crying (well, in whatever form we can) at the same time. I hate that there is such a trade off but really glad to see you enjoying things so much. Those picnic benches really are an awkward challenge to say the least.
If it helps any, there has been quite the conversation going on about the new Biotene. I think people are leaning towards Squigle, of you want to google it.
Sending hugs and wishing I could share some very mild Salsa.
Yeah, I'm not a salsa-holic, but my brother in law makes the best salsa ooooooooh yum! But with the salsa burning my mouth and the chips ripping my cheeks and tongue to shreds and my inability to quit scarfing it all down, well I finally faced the fact that I had to give it up :(. I managed a while back to trip across two tubes of the old Biotene and I am really nursing them as much as possible. I'm going straight from here to google to check out squiggle. I think we should all bombard Biotene with e-mails. I might even go as far as sending a letter or ten! Thanks for the warm wishes, I really do appreciate them.
I can relate to so much of this, especially the cycle of pain and problems, but recently they are ALL hitting me at once! I'm glad that you can have the up times to catch up on life. We miss so much of it with pain and dysfunction.
I agree with the Biotene problem, I bought my very last tube, it burns just like the Colgate Sensitive! I'll be ordering the Squigle as well!
Take good care of yourself, hope you can get the diagnosis.
I use Squigle too...but I recently forgot it on a trip and had to go to Whole Foods to buy toothpaste. Tom's sensitive toothpaste is awesome...and it has fluoride for that extra protection!
All tests thus far have come back negative. Rheumatologist tests-negative, but she says I definitely have it. ENT tests-negative, but he says I definitely have it. Every test run from my DO, PA, DDS, OPT, OPHTHA, NEURO and I've run out of initials and abbreviations, have come back negative, but every single one has said I definitely have it. And all have explained that false negatives are very common. (Ummm. Yeah, I know, she replied dryly.) And after exhaustive research on my own, frequently on websites that do NOT explain things in layman's terms, I agreed that I definitely have it, too. Honestly though, I can't sweat the details so to speak, or I'll just drive myself nuts. And I'm quite capable of doing that without all these issues! They've all agreed to treat me for it so thats what I'm going with. Celebrex and Gabapentin were added to my pill collection about 6 weeks ago, and I really feel that it's done wonders for me. I thank you all so much for your thoughts.
I ordered Squigle last night, both kinds just to be sure and I can't wait till it gets here! And you know, I've looked at that Tom's for Sensitive Teeth several times and wondered about it. I hesitated buying because I was afraid of throwing away yet one more tube of toothpaste! I like knowing there are some more options for us out there. Huh! So take THAT Biotene!!!
SK, you poor thing. I hope this doesn't last long for you, and I'm sending you a big ole cyber-hug, and a tag-a-long prayer for good measure! Feel better soon.
Pilocarpine dIdn't work for me. My doctor put me on EVOXAC. It's truly a miracle. My dentist and Orthodontist are amazed at how much saliva I have now. I used to take 3 a day. I only have to take it 2x a day now. Of course, I get the generic. The spelling is so crazy and long that I always forget it. I know that it begins with Cev.....It's still expensive. but, it's been a life saver for my teeth! Of course, my insurance won't pay for it. So, I found a drug company called "Good RX." It's for people that don't have insurance or can't get certain drugs from their insurance.Check out Good RX.com and pass the word around to others.
Pilocarpine dIdn't work for me. My doctor put me on EVOXAC. It's truly a miracle. My dentist and Orthodontist are amazed at how much saliva I have now. I used to take 3 a day. I only have to take it 2x a day now. Of course, I get the generic. The spelling is so crazy and long that I always forget it. I know that it begins with Cev.....It's still expensive. but, it's been a life saver for my teeth! Of course, my insurance won't pay for it. So, I found a drug company called "Good RX." It's for people that don't have insurance or can't get certain drugs from their insurance.Check out Good RX.com and pass the word around to others.
Thanks for the heads up about the Evoxac. I'm glad you were able to find a way to get it. I've wondered if there was something that might be better than Pilocarpine. I will mention it to my ENT at my upcoming appointment. confused said:
Pilocarpine dIdn't work for me. My doctor put me on EVOXAC. It's truly a miracle. My dentist and Orthodontist are amazed at how much saliva I have now. I used to take 3 a day. I only have to take it 2x a day now. Of course, I get the generic. The spelling is so crazy and long that I always forget it. I know that it begins with Cev.....It's still expensive. but, it's been a life saver for my teeth! Of course, my insurance won't pay for it. So, I found a drug company called "Good RX." It's for people that don't have insurance or can't get certain drugs from their insurance.Check out Good RX.com and pass the word around to others.
I miss the days when I was able to take my dog for a long walk. I struggle with having good days and bad days just like you. My doctor said to me that’s the way my life is going to be. I really don’t want to except that. I wish there was a magic pill just feel normal again.
Ramble on, you are in good company.
Ya know what gets me? If you share that the doc says that "you just have to accept this is how life is now", ya' still get people that will lecture you about having a negative attitude, etc. Its hard enough to find ways to accept and adjust to the loss without that. O'well...I do what I can to really notice and enjoy when I am on an upswing. I truly value them these days.