Quote " Baltimore, Bob B's country"


TOO FUNNY!!!

Hadn't thought about it but I guess I've basically lost sight, taste, touch, smell and some sound (haven't told you about all of this have I???) Guess that makes me severely deprived in your eyes? But unfortunately, Sjogrens is not a funny disease. The next time someone tells you "Oh Sjogrens is that dry mouth, dry eyes disease", whack them one for me. The Sjogrens Syndrome Support group along with the Sjogrens Syndrome Foundation are educating and supporting people who have this horrible disease. Physcians that are being taught and the ones who are in practice are just now becoming aware of some of the deadly consequences of this disease after years of being told it was a "nuisance disease". So many of the physicians who are in practice are being educated by their patients. We also are spreading the word thru our friends and family and everyone who comes in contact with us that Sjogrens causes neuropathy and sometimes severe pain. It also causes you to painfully lose sight, taste, touch, smell and sound. It is not a nuisance disease. O.K., consider yourself told!!

O.K., Off my soapbox, I just had to get this said. Dalek started it.

Billye

Good idea Dahlek - BB? - got any taste suggestions?

I guess when we loose our senses we come to depend more on what we have left - for me the sensosry PN has resulted in loss of ablity to feel severely (and have the scars to prove it) (and also why you have trouble trying to read my typing - cant feel the keys) - but feel lucky to have sight (which is starting to go but at 50 I'm told reading glasses are normal) - can still smell food, and I "hear like a fox" according to my doctors - can't imagine not being able to listen to music.....

Billye - I put in punch for you last week when I saw a posting on another site describing sjogrens as you just did - and told them it was much more then "just dry eyes and mouth" - didn't a good response .... but if they were afflicted to the degree you are - would understand....

Lets all hang in there We can carry each others loads where the other is lacking!

Why NOT talk about IT ALL? All of last year...I'd had vision problems..either associated with the PN, something else I already had, the meds or something new...Turned out to be none of the above, found out I'd the big C tho, this year...

The diagnosis of the vision stuff [now in abeyance, thank you very much!] was that it might be a 'non-aura optical migraine'. I webbed up furiously, as those who know me can imagine...[how many 'different' ways...can you put this to the search engines--or whatever they are...geesh I remember CARD CATALOGS in libraries!] Summary? I hiked up-electronically mind you- more dirt roads than one could conjure up! & summary is piddly-poop! However, thru out it all...I was, despite all my various docs' reassurances, scared spitless! & I wasn't even in Seattle! [No offense to that region, I'd TAKE a 'rain tan' rite now I'm soo 'indoors'!] Now, I'd been the cataract route, almost a decade ago [the thyroid route also ]-run in my family...OH joy! So, That aspect was out, early in the process..that's how I got all the vascular stuff checked out tho. All came up totally rosy...Good maybe ![?]! The fearson top of fears are worst enemies What was it from the POGO comic strip? I'VE MET THE ENEMY AND IT IS US! is patently true.

Has ANYONE HEARD FROM BOB LATELY? I am hoping and sending good thoughts, but, I want to send more, AND know HE IS OK [as well as a PN'er can be] now.

Meantime, off to check out McCormick Spices, the folks who invented 'flavor sprays' I believe! Think on it! for those of us with weight problems...what a way to diet or lose weight! For those who can't eat, what a soporific?
Good thoughts to all and always - j

I wonder how many of us there'd be out 'swinging the old 2'x4's' if we did it all at once? More that the stats show, I'm betting! - j

There was a time, almost a year, when I had no sense of taste. It was thought to be due to the neuropathy, but turned out it totally improved when I was treated for a sinus infection. During that year, I lost about 15 pounds. Everything tasted like cardboard, and I had no desire to eat at all. It was a huge loss.

There were only a few things which still tasted pleasant. Chives and dill were okay, and I added them too everything! Also, ricolo mountain herb hard candy was okay, and actually replaced the awful taste I had in my mouth constantly with something lighter.

I imagine that for everyone it's different, but that some taste might be left. The idea of the flavor sprays is really interesting. Has anyone with this issue tried them?