Monday, January 22, 2018


One of the things that has been difficult to endure of late, aside from the attack of the Trigeminal Neuralgia, is the sicca syndrome that companion to Sjögren's Syndrome.  It is possible to have sicca syndrome without having Sjögren's, but sicca is usually the presenting set of symptoms with Sjögren's.  It is the excessive dryness of tissue:  skin, eyes, lips, mouth, throat, sinuses, and private areas.  Generally, you hear about the eyes and the mouth.

I am rather thankful that I do not have a severe dry mouth.  Mine is dry, but the go-to help of Biotine works for me.  However, as I have written before, I have dry eyes, a dry throat, and dry sinuses.  And, well, dry lips, but I am ignoring those in light of the Big Three that are plaguing me.  The thing is, that which I have been doing to manage those symptoms are no longer working for me.  I mean, they are working, but no longer well enough.

I wrote about my eyes, about the specialist discussing cauterizing closed my tear ducts as a next step if the drops-every-hour doesn't start moving the needle for my beleaguered corneas.  With my throat and my sinuses, the dryness is worsening as well.

With my sinuses, there are more things that I can try.  The nasal emollient helped and is still helping because it shoots up rather high.  But I am back to bleeding and large scabs every day.  I just started using nasal gel and have some nasal mist on the way to see if I can get more moisture up my nose!  I snort the steam in the shower and use saline spray every day.  And I have the house humidifier set higher.  I still haven't gotten the hang of using the nasal gel.  I suppose there might be a You-Tube video for that, but I haven't looked.  I am quite skilled at sticking gel in my eyes, which I've always been squeamish about when it came to my contacts.  I'm hoping I figure out the secret to using the nasal gel.  I am not concerned about the nasal mist when it arrives.  I am the Queen of Snorting these days.  SIGH.

The problem with the dry throat is that there is very, very, very little to do.  There are no medications and no over-the-counter products for dry throat ... at least not the actual throat as opposed to the back of your mouth.  The dryness is so very bad now that sleeping—and not drinking—means that I start coughing and gasping.  I'm trying to drink whenever I get up to fetch fresh ice packs.  And I am using Chloroseptic, Cepacol, and the Tesselon Pearls.

It is hard to get the throat spray far enough down my throat to work since you have to let it sit on the tissue a bit to get the numbing factor started.  I've been hanging my head backwards off the bed trying to swish the Chloroseptic around my throat without swallowing it.  It's the same with the Cepacol lozenges.  I try to suck on them at the very back of my throat without choking.  And, lately, I have been trying to let the Tesselon Pearls dissolve at the back of my throat before swallowing them.  It's a tricky thing because the numbing factor is severe with that drug.  Sometimes it interferes with my ability to swallow and I end up choking on my saliva when trying to sleep.

The coughing and gasping are so very despairing.  When I am trying to sleep, it is because the nausea or the chills or the writhing or the blood sugar or the blood pressure or some other part of me is not malfunctioning and I can actually get some sleep.  The fact that I struggle so very much to sleep ... I just sort of lose any sense of equanimity and sensibility and ... and ... hope.

It's a bit wild and a whole lot frustrating to have such a dry throat and down a few dozen ounces of water and gatorade and have your throat be just as dry when you are finished.  Currently, I am also trying the use of honey to coat my throat.  Thankfully, my friend Emily sent me some local honey as part of the most lovely Christmas package she sent.  I am not seeing a significant result yet, but I do like the taste!

On Wednesday, I see the Integrative Medicine Specialist and am most fervently hoping that she will have an idea of something to try.  I am going to ask if the two weird OTC meds I am taking can be increased.  Most particularly, I am wondering about the hyaluronic acid, since I am taking it once a day.  She also mentioned trying trace minerals, so I thought we could see if she still thought there might be a chance of that helping.

The problem is that I am taking four different eye drops in addition to the Restasis and now four different nasal meds and four different meds for the chronic constipation that the new nerve pain medication is making worse, as well as a dozen other over-the-counter medications and supplements, such as the high EPA fish oil for my beleaguered eyes.  All of that adds up something terrible and yet nothing that I am taking is expendable.  I know, for I have already eliminated what I could.  The last time I crunched the numbers, I was spending over $200 a month on over-the-counter meds just to try and keep up with my symptoms.

This dry throat thing ... well ... I give anything if there was something I could take to bring it back to a manageable state.  Anything at all.

So many people with Sjögren's end up with dentures because our teeth need saliva to remain healthy and in our mouths.  I want my teeth to stay right where they are.  That's why I am assiduous about using the Biotine even though my mouth is not miserable dry the way my sinuses, throat, and eyes are.  I wonder, sometimes, if the tissue in my throat can become damaged the way my corneas are being affected, the way gums and teeth are.  I wonder the same about my sinuses.  SIGH.

Sometimes, I want to lie on the floor, flailing my arms and legs, and scream how unfair it is to get Sjögren's on top of Dysautonomia.  Sometimes, I want someone to sit beside me and hold my hand and whisper how unfair it is to get Sjögren's on top of Dysautonomia.

I think it is easier to talk about how chronic pain is isolating, because dealing with pain on a daily basis changes you as a person and few, if any, of the people in your life can understand the battle ... and the loneliness.  But I believe that living with chronic illness and having to manage symptoms and mediations and medical appointments and insurance and bills day in and day out is just as isolating, even if you are blessed not to battle pain.  You find yourself trapped in a different world, out of step with everyone else.  As much as you want to rejoin the world in which you were living before your body began to fail, you cannot.

My sister told me, a while ago, that she thought it would be better if I stopped trying to talk about specific medications or use medical terms when I am interacting with others.  She said that she found herself tuning me out because she couldn't follow what I was saying.  "Nerve pain medication" is better than saying gabapentin, baclofen, or duloxetine.  People can understand and create a frame of reference for nerve pain medication, but they cannot for the specific medications.  What she didn't say is that she realized I was trying to be less alone with what is happening to me, but my attempts to get someone interested in my medications and symptoms and tests and treatments had the effect of ... well ... pushing folk away.  It was hard to hear her words, but I do not think she is wrong.

My dear, dear friend Rebecca Anne Bettina Matilda Boyles Kulp is trying to learn what she can, but she has a life with a husband and children and a new job.  It takes most of my days just trying to stay on top of my medical life.  How can I expect or even want someone to try and take in the massive change to my life when that person would only have bits and pieces of time here and there?  It is too much to ask ... or desire.  SIGH.

Yet I do desire that.
And I continue to try to explain.

I do not think that I will ever be able really describe what my battle with pain is like.

Or my cold spells.
Or my dry throat.

How can I get you to understand how sicca can drive a person to despair?  How can I show the misery of body and mind and spirit that festers in the deserts of my body?

"Sicca" is a word that I long for you to learn and it is a word that I wish I had never heard.

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