Being Dry Makes Me Cry

Rena Newman avatar

by Rena Newman |

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embarrassing moments, sugar, dry, brain fog, Raynaud's, creative art therapy, wooden tooth, Diary of a Sjogie

It’s a stale Saturday night and I’m in my living room hanging with the kitties.

My eyes are devastatingly dry and irritatingly itchy! I rub my left eye with two fingers and then my right, which is itchier and burns more for some reason.

Of course, I can’t get in there good enough since my fingers are weak and sensitive, and I have remnants of sores on my fingertips caused by Raynaud’s phenomenon. Ugh. I’m incredibly uncomfortable and out of eye drops.

I can’t wait to devour another popsicle. I’m parched and pounding this ice-cold water. Aaah. Ack, ack! Easy there, dysphagia.

There’s my Dr. Pepper-flavored lip balm! Hmm, hmm, hmm. Muah.

Are there ashes and soot in my mouth? What should I do next? If I chew another piece of Dentyne gum, I’ll surely vomit.

Later that night

Yeah, no relief.

Time to get up and fetch a few Q-tips to stick into my nostrils. I don’t know why I bother, as I’m never able to remove anything. Still, it feels like some shriveled thing set up shop in there. If I did this in public, I wonder if people would think I had rhinotillexomania — more commonly known as compulsive nose-picking.

Xerostomia: Live at the Cotton Mouth Theater.” (Courtesy of Derrian Childress)

Blink, blink. Scratch. Squish. Grr, Sjögren’s!

I hear thrush metal vocals in my head scream-singing, “My glands are dry, dry, dry! Why, why why?! I’m desi-CCATED!” It’s followed by a snazzy guitar solo with ornamentation overkill. Nice.

Unexpected road trip

Friends, wouldn’t you agree that dealing with Sjögren’s symptoms, including constant excessive dryness, is harder than people think? And as we know, it isn’t the only struggle connected to this disease.

We cannot allow it to drive us mad. I admit, though, I’d like to karate chop this coffee table or do a fancy Jean-Claude Van Damme spin kick to the cat tree. Better yet, maybe I’ll take a long drive over to Smash*It Breakroom to unload my frustrations. Anyone want to come with me? Road trip!

Final thoughts

Sometimes there’s not much we can do about our illness. We try to take care of ourselves and find a way to live with this disease.

I have to remind myself that it’s OK not to be OK. Excuse me while I scream into this pillow.

We’re all in this together. Toodles, everyone.

Positive affirmation of the day: I will focus on the grit in me and not the grit in my eyes.

A shoutout to Siobain. It makes me smile that you are enjoying my diary. I love your name. Be blessed.

***

Note: Sjögren’s Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sjögren’s Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Sjögren’s syndrome.

Comments

Siobain Duckworth avatar

Siobain Duckworth

Another witty repartee from over the Pond, thanks Rene. Whenever I read your diary it makes me look at life a different way and I realize none of us are alone. I have learned to live in the moment and appreciate what I have. Sjogrens is just the uninvited visitor at the party, soon forgotten in the music of life.

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Susan Masterson avatar

Susan Masterson

That affirmation is awesome!

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Katrina Mabon avatar

Katrina Mabon

I also have these illnesses and a very sore dry mouth. Some swish and spit preparations help but not completely. Do you know of anything that can help this poor sore mouth, particularly under my tongue?
Thanks!

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Jenny Wilson Mountjoy avatar

Jenny Wilson Mountjoy

Are you sure they itch just from being dry? I have an allergy to (only) black cats. When I pet them, my eyes go bonkers. Also, I have my lower tear ducts cauterized, and it made a huge difference.

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Ellen McPherson avatar

Ellen McPherson

Rena,
I absolutely love your comments - they are so in tune with what I am experiencing with my Sjogren's, Raynaud's and RA diagnoses. The dryness isn't the most frustrating, it's the all-over constant itching that seems to come from deep within that drives me crazy. It's got to be systemic, as I keep hydrated and moisturized. Checking to see if it's the meds causing the itching (the Pilocarpine ?) Any ideas?

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Laurie Nichols avatar

Laurie Nichols

Thanks again, Rena, for talking about it. IT being whatever the “pain of the day” may be. Surprise is a good way to describe the symptoms of Sjogren's. I keep discovering new ones, but now I am getting better about how to take care of myself when various difficulties pop up. I am thankful that I don’t have all the pains all the time, and I will usually feel better again, until the next time, in a different body part! It’s nice to be able to talk about it and hear other people’s coping mechanisms. I also wondered about the cats. Take care!

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Lorraine Scott-Wilson avatar

Lorraine Scott-Wilson

Good article and spot on.

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Sheryl Aronson avatar

Sheryl Aronson

I hope Siobain sees this. I tried the 'Reply' button under her name, but it didn't work. I love that last sentence: Sjogrens is just the uninvited visitor at the party, soon forgotten in the music of life.
Rena - I love your attitude as well. It keeps me coming back to read your thoughts week after week. Yeah, Sjogren's is a b****, but ya gotta live life. I have heard people say that growing old isn't for sissies. Sjogren's definitely isn't for sissies. I am now in the 'growing old' phase of life. How does one not be a sissy x2?

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Susan avatar

Susan

Thanks for sharing, it helps immensely ❤️

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Judith Mitchell avatar

Judith Mitchell

I am in Australia with Sjogren’s , Addisons and Hashimoto’s . My immunologist said try the following for my dry mouth:
Drink Isoptocarpine eyedrops (3 drops 4 times a day) in a small amount of water. It is working remarkably well for me. I don't seem to get any of the long list of side effects. Recently I was diagnosed with Candida of the oesophagus that the Immunologist thinks was the result of not having enough saliva for a long time. This treatment fr saliva production needs medical assessment and prescription of course. However the other moisture aids did nothing for me. Ask your doctors!!

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Bev avatar

Bev

Like Sheryl A, I am entering the old stage of life and Sjogren's. What "worked" yesterday, does not work today. Constantly evolving. I will advise Rena to toss out the dentyne and get something sugarless and sour. Cry Babies gum balls (has sugar) and several Trident flavors keep my mouth happy.

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Dasha Trebichavska avatar

Dasha Trebichavska

I am glad you mentioned this subject and hope it will penetrate deep into mostly medical professional consciousness. Note that the article prior to this one mentions Lymphoma in its' title as a risk of Sjogrens. I am a nurse and know what that means--cancer of lymphatic system--basically excessive inflammation (presenting as chronic dryness) is a result of lymphocytes infiltrating the salivary glands destroying and changing the structure of the tissue to the point of turning it into a cancerous tissue (the surrounding lymph nodes get infiltrated as well). My mother who got used to dry mouth and swallow issues to the point that she stopped noticing and complaining was diagnosed with lymphoma. I have similar issues and am just waiting for 'the shoe to drop'. PCPs do not anything about Sjogrens or autoimmune conditions in general and most rheumatologists are downplaying it. They do not screen sufficiently which to me means they are not told, trained at their seminars to look out for these issues. Most rheumatologist have not taken Sjogrens seriously enough. Somebody quoted that the quality life with Sjogrens is like living post cancer treatment. I am onto rheumatologist #5 who still is not serious enough about my autoimmune condition because labs are still good and my signs symptoms have been disregarded because they are measurable. What does it take to get a good assessment, judgment, treatment plan?

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Mit John Street avatar

Mit John Street

I do have Sjogren`s but it is not the dryness that makes me so annoyed : it is the pins and needles and numbness that gets me. Every so often my mouth will fill with water and I dribble. I suppose that not being able to taste much is a real downer as well. I have ME and Diabetes as well, I grow Bonsai trees and have about 100 Shohin ; It is so annoying when I am working on them and fatigue sets in : and I am desperate to carry on, but my legs give way and I collapse. I gather that is quite normal for people suffering with Sjogren`s, but I suppose ME does not help : I used to fall into comas, but that has gone now :: just awful fatigue and loss of feeling in my hands and legs. But I am getting my trees done, one way or another : I am proud of them. My cat Nero is so intelligent : he comes to me when I am depressed and takes my hands and hugs them in his tummy and strokes them for me. He is a Siamese cat and no one has taught him all he does for me He knows when I need to pee and will scratch me under the chin and escort me to the bathroom. He then rolls onto his back for me to massage his own tummy. He also gives me a high five when he is pleased to meet me !! Quite amazing and true. Get a Siamese cat if you have Sjogren`s, they are so loving and caring for you. Much more tender than my wife and family. Thanks for your up-date BTW. Keep your chins up.

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Andrew Pollock avatar

Andrew Pollock

I get the pins and needles and the cold feet too, but the hardest thing is looking normal, so people think you can still do what you used to do at the same standard and efficiency. I was diagnosed 3 years ago. Still working it out.

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Susan Brown avatar

Susan Brown

Thanks for your blog…Spring diagnosis of Sjorgrens and waiting 6 months for a rheumatologist appointment. In the meantime visited a functional Med doctor on line. He recommended the Wahls Protocol Diet, along with other remedies. Eating salty foods, peanuts, coffee, and any alcoholic beverages seem to trigger symptoms. Really on the straight and narrow these days!

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JayneAnderson avatar

JayneAnderson

Thank you for this website, I have gone through this for 20 years. People don't understand the disease so they assume you make these symptoms up. I feel better knowing I'm not alone.

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Alberta Kucharski avatar

Alberta Kucharski

I am 78 years old and new to this illness. Just diagnosed in March. I was a person who always liked to be busy, so the fatigue is very hard for me to deal with. Also the dry mouth and problems eating and swallowing. Have yet to find anything that helps the saliva problem. I'm wondering....does this disease present differently in different people? Or can I expect to eventually experience all the symptoms others complain about? Have yet to find a rheumatologist who can give me much guidance on how to live with Sjogren's. I have an appointment with a new doctor the end of July who has other Sjogren's patients so I'm hopeful. Any advice would be helpful...

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Lisa avatar

Lisa

Hello, first time reading this diary. Very good. It helped. I was wondering what people do for their dry eyes. Mine are so intensely horrible. My doctors are surprised I did not go blind. My pain in all of my limbs is beyond words and I am so tired too. I have no life anymore. All I do is take care of my eyes every 2 hours and rest because the pain knocks me out. Can anyone give me some advise about my eyes please? The only ointment I have found that helps a little is Systane nighttime ointment. I do 4 different prescription drops every day, all day long. What else can I try for my eyes, please?

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Jenelle Fleck avatar

Jenelle Fleck

Thanks Rena. I look forward to your posts. I am 71, diagnosed at 35. Nothing is new at this point, but your funny, lovely writing is great. I wish you well. Keep writing.

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Ann Rogers avatar

Ann Rogers

New to this site and I see so many of "my problems" in your messages...hard to explain this feeling to anyone..I mean how can you have a dry mouth when you constantly have to swallow but I do! Eyes constantly dry, nose problems...I see it all in your messages. So far the only thing my doctor has done is prescribe Pilocarpine (which I can't take because it increases my already high blood pressure) and have me spit in a cup to see how much saliva I can product in 5 minutes!! That's always fun (not)....

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Laurie Nichols avatar

Laurie Nichols

FYI - unable to post a reply to someone’s comments.

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Peg Weir avatar

Peg Weir

Hi Rena, your posts are wonderful. I always feel better after reading what’s on your mind. Thank you. Take care. Hugs, Peg

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Rena Newman avatar

Rena Newman

Hi Peg. Thanks for your comment. Hugs back to you <3

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Sharon White avatar

Sharon White

Ellen McPherson,
I too have quite a few autoimmune diseases. My Autoimmune Hepatitis caused me to have the most relentless itching from head to toe! I was going out of my mind until my doctor prescribed an old drug called Rifampin and within less than a week I felt heavenly relief!
Ask your doctor if it would be right for you. Best of luck!

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Sharon White avatar

Sharon White

Just happened upon your website Rene, and I too, have a rowdy crowd of autoimmune diseases. Psoriasis in the beginning, then Autoimmune hepatitis, PBC Primary Biliary Cirrhosis which led to my liver transplant 9 years ago. Also Hashimotos Thyroiditis and not diagnosed yet but have dry mouth and eyes also. Be careful before Cataract Surgery to treat dry eye carefully, it can affect the outcome of that surgery. The surgery makes dry eye worse right after surgery. My opthamologists office has a separate doctor for dry eye to check your condition before surgery. I too had intense and unrelenting itching from head to toe until my doctor prescribed Rifampin, an older medicine and what a relief within a week. Thank you Rene for your very funny insight into your personal experience that helps us all! Hang in there and look forward to your dose of funny again.
From Newbie,
Sharon White

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Rena Newman avatar

Rena Newman

Sharon, thanks for your comment. I'm sorry to hear you're dealing with those illnesses. And you're welcome. I'm glad you're here and that you're enjoying my column (:

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Eileen m Burkhardt avatar

Eileen m Burkhardt

I find that ayr on the qtip makes a big difference to my nose and Biotene for the dry mouth - or compulsively drinking decaf Crystal Lite Iced tea...

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SHEILA GUY avatar

SHEILA GUY

Hi all. How 'refreshing' to read all these posts! And don't we all need refreshing!!! I recognise so many symptoms mentioned and my sjogrens has been progressing for the last 10 years. I feel your frustration Lisa. My eyes ache so much by the evening I use a cooling gel eye mask. I keep it in the fridge. It really does help me through the evening! Hope this helps. Keep your chins up pals we are not alone!
Sheila

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Judy Mitchell avatar

Judy Mitchell

I was seeing different specialists for Addison’s Hashimoto’s, lymphoctic colitis and ophthalmologist . Now I have Sjogren’s as well, I have sought out an Immunologist. Relief! He recommended trying Isoptocarpine eyedrops taken by mouth. What an amazing difference to my horrible dry mouth! Wet kisses being offered all round!! May be having some effect on my dry eyes too. No side effects so far although the intense itching is still there . I got Candida plaques in my oesophagus that the gastroenterologist photographed during gastroscopy. Only the Immunologist could explain it as being probably due to having had lack of saliva for swallowing because of a dry mouth for so long. I had to suggest the Sjogren’s myself to the GP and I travel 100 Km to see the Immunologist.

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Anne avatar

Anne

I have lupus, raynouds, sjogrens, and celiac. For the severe dry eye, I have IPL treatments. I no longer need restasis.OTC eye drops are all I need. One doesn't cover this procedure but for me it's worth every penny. Also am a 12 year triple negative breast cancer survivor. Dry mouth is horrific and experienced the worst sores on my hands this past winter.

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Maureen avatar

Maureen

I was going to make a comment but then I thought what’s the use, nothing can fix me I have the full load and live everyday struggling to go on. I wonder if it’s worth trying it won’t change I try to get what happiness I can but the condition rules every hour of my life day and night.

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