Email questions and answers

 Hi folks.  Received several emails about products and suggestions regarding my condition.  If you aren't interested in Sjogren syndrome details, or in need of any good products to help with your dryness, no reason to read this post because stitching is not included.

 Part of my anxiety and depression since the first lung diagnosis, is related to dealing with this condition.  It may not continue to invade other organs, or it may.  Lungs are often involved which is one of my unanswered questions regarding my current problem.  But even if it doesn't, this is what I have to deal with every day, forever.  Sometimes, although not even close to health issues of others, I just can't handle it.  And this is one of those times. Is this a temporary or treatable condition?  No.  Does it ever go into remission?  Rarely.  Are there medications to increase saliva?  Yes.  Do they create other organ problems?  Yes.  Will I ever consent to another flu shot?  Never.  Can I receive the Covid vaccine?  Unfortunately no.  Am I looking for sympathy?  Hell no.  Just offering one of many reasons for being a crabass, and answering some queries.

I have tried every single dry eye product on the market from $8 to $18.  Because I need to add every 15 minutes, Similasan is the best and even used with contacts.  Homeopathic and not China made, glass bottle.  I need several bottles a week and they are (thankfully) the cheapest at less than $10.   The applicator is a long clear tube making it the easiest of any to administer.  Restasis was useless, Xiidra samples helped but at almost $600 a month and not covered by Part D, out of the question.  Friends on retiree plans from the government would pay $15 and offered to try to get them, but I can't allow that.

Dry mouth (lips) caused from destruction of salivary and other glands, is not the dry mouth you wake up with.  Your mouth feels like it's glued, your teeth feel coated and filthy in need of brushing, your tongue is full of deep fissures and constantly burning.  What you feel when that hot cheese on the pizza slides off and burns your tongue, is 24/7, every day.  Eating is no longer enjoyable regardless of the food.  Everything that touches my tongue creates a more intense burn except for watermelon and ice cream.   Salad dressing, fruits (even apples), some veggies, carbonation, chocolate (!!!!!), condiments, my beloved spaghetti sauce, and so much more is off limits.  I will never give up pasta so I have a product that contains Lidocaine and coating my tongue before eating is necessary.  Cheese, bread, and soft products adhere to my cheeks, teeth, and even with water just don't release.  Water does not have the properties of saliva, but I can't swallow without liquid.  Anything harder turns into what feels like a dried up cotton ball.  

The products I found to be the best are shown.  Xyligel is soft slime and the best, applied several times throughout the night.  Not good for daytime because it is not clear and quite disgusting if you're talking to someone.  During the day, Biotene (clear) is used but burns a little.  The GUM Hydral really burns and I won't be purchasing it again.  Relief lasts for less than 30 minutes.  Usually 4 tubes a week are used.  The discs and lozenges are not used ever since one dislodged and went to the back of my throat in a store.  

My lips, which stick to my front teeth, are unbearable and feel like burned leather.  Using Aquaphor and other mostly petroleum products creates a rash around the edges.  Chap stick type products including O'Keefe's guaranteed to last all day stick, do nothing.  When the glands are dead, there is no moisture at all inside, no external product can help restore moisture.  I looked into the plasma injections but the doctor said the increased platelets would eventually die.  Lip injections/fillers would help appearance, but quickly be absorbed.  And hurt.  And cost a lost.  Hyaluronic acid attracts moisture and since there is none, those injections would also be futile.  For night and throughout the day, the Cerave healing ointment does help with the splits and was my dermatologist's recommendation.  A product I found online (Ulta has it also) is in the men's line of Jack Black products, Intense Therapy lip balm ($8).  This is the only topical that soothes without feeling heavy.

So there you have it.  I hope it explains why products are only temporary soothers.  I must mention that a wonderful stitching bud sent a large package of treats and they are the best hard candy I've ever had.   Between cheek and gum, very enjoyable!!  These two treats are now on my Amazon list.  Thank you so much Ann!!

Hope your weekend is enjoyable!!

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