Forever Flaring

It is quite frustrating getting a good groove on, sleeping on a schedule for most part keeping flares/pains/aggravations under control and then BAM….Something derails the train.  

For a while I was sleeping to till 7am to 5pm then it move back a little then I had to adjust my sleeping time in order to attend family events.   That is when the train ran off the tracks, periodically I had gotten the groggy throat sjogren’s attacking my throat and voice box, but not to this level.  I ended up sleeping for 48 hours waking up for short time to eat and drink and then back to sleep trying to get back on a schedule. 

Throughout this time I was also have issues with my eyes, burning, blurry vision, that has prevented from doing some of my favorite pastimes, writing and reading.  Finally got back to see the eye doctor I saw first and he wasn’t too happy about the job one of the residents did with my eye plugs. 

In 2012 I had the plugs put in and the resident had problems placing the plug in my left eye and ended up cutting the plug down some.  As I told the Eye Doc this he had a skeptical look on his face until he looked in my eyes, low and behold the right plug was missing in action and the left was half way in and half way out, and it had been cut down in an attempt to fit.  What are eye plugs???

Main article: Punctal plug

Punctal plugs are inserted into the puncta to block tear drainage.^[7] For people who have not found dry eye relief with drugs, punctal plugs may help.^[7] They are reserved for people with moderate or severe dry eye when other medical treatment has not been adequate.^[7]

The girls also did a test called :  Schirmer's test measures the production of tears: a strip of filter paper is held inside the lower eyelid for five minutes, and its wetness is then measured with a ruler. Producing less than five millilitres of liquid is usually indicative of Sjögren's syndrome. This measurement analysis vary among patients depending on other eye related conditions and medications that they are on when the test is taken.^[19]  And guess the result for Heidi that will be I had absolutely NO TEARS, bone dry baby.

So what to do well apparently a q-tip and a hot rod…………and a process called Cauterization.  So what is this you speak of well a little goggle search and on wiki:  “If punctal plugs are effective, thermal^[8] or electric^[1] cauterization of puncti can be performed. In thermal cauterization, a local anesthetic is used, and then a hot wire is applied.^[8] This shrinks the drainage area tissues and causes scarring, which closes the tear duct.^[8]”    So lidocaine, needles then a burning sensation, didn’t feel the needle in the eye but damn sure felt the burning.

This process helped for a few days but as I figured it is simple impossible to keep my eyes from being dry, 4 to 6 preservative free drips a day in my eyes and use a thicker gel for night time gives little relief.  Thank-fully my next appointment is set for May where they will either put plugs or cauterize my upper tear ducts. 

Like my eyes being dry so is my mouth which leads to thrush, sores, burning tongue and trying to find toothpaste that doesn't cause pain has become a task.  Frustrating when u literally do a fidgeting dance trying to brush your teeth as your mouth is burning, using a paper towel to try and dab your tongue in hopes of stemming the pain/irritation.  Then spend the next 2 hours waiting for the swelling and burning of your mouth to stop.

Next up is to test my nerves to see what damage may have been done from chemo, and if the Sjogren’s is now affecting the nervous system.   Hopefully this will provide some information and explain some of the pain, numbness and other issues that has been plaguing me on and off since my adventure began in 2008.