Dry Eyes Part 4: Nighttime Eye Ointment

I purchased several brands of nighttime eye ointments back in February to see which one I liked best.  I had been using Retaine PM, and I thought it was quite good.

The other brands I tried were Systane, Soothe, and Refresh.  I wasn't that happy with any of them, but they seemed decent.

I used Refresh consistently for a few weeks, and I decided I would not purchase it again.  I feel like the tube design makes it too hard to get at the ointment as the amount remaining decreases.

Around April 18-20, I used Systane and noticed that my eyes felt worse the next day.  This gave me pause.  Could this have something to do with the odd fluctuation in symptoms?

I checked reviews, which are overall quite glowing.  I did find one where someone said that Systane irritated their eyes.  Someone else said that Systane made their eyes itch.  I wondered.

I switched to Soothe for a few days, and my eyes were somewhat better.  I wanted to be sure, so I decided to use Systane again.  On the night of April 23, I put Systane in my eyes and then got into bed.  Around five minutes later, both eyes were itching.  I was a bit horrified.  

I immediately got up and used eye drops to flush out my eyes.  At that point, I knew that Systane was a problem, but not necessarily the problem.

I checked the ingredient list.  Click on the image in order to see it clearly.

I saw Liquid Lanolin (3%).  That answered two questions in one.  My lips have been a problem for many years.  I cannot use any lip balms.  All of them burn my lips.  Around five years ago, I settled on Aquaphor.  It was great!  Until it wasn't...  One morning a few years ago, I woke up looking like a clown.  My lips were on fire, and I had a rash all around them.  I had to quit the Aquaphor and switch to just Vaseline on my lips.

The only thing in the Aquaphor that could have possibly caused a reaction was lanolin.  However, I read online at that time that very few people have a lanolin allergy.  Still, it seemed like I might.

The itchy feeling five minutes after putting Systane in my eyes was unmistakable.  It's now apparent to me that I do have a lanolin allergy.  That was my Aquaphor problem, and it's my Systane eye ointment problem as well.

I checked my other eye ointments.  Refresh has "lanolin alcohols" in it.  Really?  That would explain why I didn't think the Refresh was that great.

Soothe and Retaine PM don't have lanolin in them.  That's good to know.  I will stick to those two brands and will avoid the others.

After I figured this out, I put Retaine PM in my eyes and went back to bed.  I noticed the next day that my eyes felt much better.  I should never have purchased any other brands.  The first one I tried, Retaine PM, is the best one for me.

This didn't solve the entire problem, but avoiding lanolin in the eyes was a positive step towards improving my dry eye.

Dry Eyes Part 3: Serum Tears and Possible Anemia

On April 1, the skin around my right eye became swollen, and my eye hurt.  I decided that the punctal plugs needed to be removed.  They were removed on April 4.  My eyes immediately felt much better.  Oddly though, my discomfort began to return.  Some days were fine, and others not.  I couldn't understand it.  I realize that happens, but I felt like there was an odd pattern to it like something was causing it.  I couldn't put my finger on exactly what was causing it.  [I mentioned in a previous post that this is important.  I still couldn't figure it out.]

Meanwhile, I was prescribed serum tears.  I went to the lab on April 9 to have my blood drawn.  I ended up feeling quite tired—extremely so—for several days.  I knew that my tiredness was due to the blood loss.

I am borderline anemic and have been for many years.  The blood loss worsened my condition to where I really felt it.  While the serum tears were quite soothing, I continued to have trouble.  I read that serum tears can take several weeks before helping.

I continued to feel so very tired that I looked into the symptoms of anemia.  I discovered that anemia can cause dry eyes.  Oh!

I decided to start taking an iron supplement each day to see if that would help.  My tiredness improved.  I didn't notice anything different with my eyes, other than the usual variations, but I also knew that it could take some time.

My next regular doctor's appointment was in early June, and I felt like if I stuck with the iron until then, I could then see whether it helped. 

Also, I had a lot of discharge from my left eye.  It was most significant in the one week after the punctal plugs were removed.  Those things messed up my eyes.  On the day that I got the serum tears made, I had yellow mucus pooling in the inner corner of my eye and running out.  It was a bit disturbing.

Serum tears help with inflammation, so that I knew that I had the treatment I needed for the irritation.

On April 13 and 14, my eyes felt much better, although still dry.  I felt hopeful.  On April 15, they worsened considerably and continued to be quite bad on April 16 and 17.  I still felt like there was an odd pattern with something causing the change in symptoms.  I still couldn't figure it out.

I noticed that my eyelids were becoming more irritated and a little swollen near my meibomian glands.  My eyes were more inflamed, and I couldn't pinpoint why. 

I tried the eyelid wipes again, and it seemed that my eyes became worse.  I continued to feel that the eyelid wipes were an allergen.

By this point, I was quite frustrated.

Dry Eyes Part 2: Blood Pressure Medications

In late March, I began considering that blood pressure medications could be part of the problem.

I will start with the backstory, since it is relevant. 

I was on lisinopril paired with hydrochlorothiazide for around 8 years from around 2006 to July 2014.  I was fine on it at first, but towards the end, I coughed constantly.  The coughing impacted my quality of life, and I was switched to Bystolic.  Over the years, my blood pressure gradually increased, so I needed to be put on a secondary medication.

In November, it was suggested that we try chlorthalidone, which is a diuretic.  I was hesitant, because of my problem with coughing before and how excessively dry I am.  I agreed to try it, and I didn't cough, so I thought I was okay.  Unexpectedly, routine labs in early February showed that my electrolytes were dangerously low.  I was pulled off the diuretic.

Lisinopril without a diuretic was suggested.  I agreed, since the medication would not be paired with a diuretic.  At first, I thought I was fine, and I didn't realize anything was amiss.  In fact, I ignored the obvious due to my preoccupation with my eye trouble.

I detailed in my previous post my attempt to fix my eye trouble that began in late February.  I thought I had figured it out on March 23, but I worsened again.  It was on the morning of March 26—and not in relation to anything with my eye trouble—that I suddenly thought about how much I had been coughing.

I realized that I was taking lisinopril and that I was coughing uncontrollably.  The coughing was violent and caused loss of bodily functions.  Really awful coughing.  I was sure that it was worse than the coughing that I had previously while on lisinopril paired with hydrochlorothiazide.  I couldn't believe that I hadn't made the connection.  I had been so distracted by my eye condition that I hadn't realized that lisinopril was making me cough.

I now know that I cannot take lisinopril with or without a diuretic because of the coughing caused by it.  And to think it took me over a month to figure it out.

As soon as I realized that I was coughing too much, I typed up a message to my doctor explaining and requesting a change.  After I did that, I considered my eye situation.  Hmm...

I thought through the sequence of events.  I figured out that I took my first dose of lisinopril on February 17.  The coughing began around February 23, nearly one week later.  I believe the coughing worsened on February 24 and 25.  I know that the coughing became a problem early that week.

Once I worked that out, I came to a huge realization.  My eye appointment was on February 26, three days after I started coughing from the lisinopril.  I also recalled vaguely but without specifics that my eyes had worsened a little in the few days before my eye appointment.  They became dramatically worse immediately after my appointment.

It seemed that lisinopril could be what caused my eye trouble.  I would never have suspected that, since I previously took lisinopril for eight years with no eye trouble.

I quit taking the lisinopril as soon as I realized that it was the cause of my terrible cough.  I noticed that my eyes were immediately less dry.  I thought maybe I had figured it out, but no.  Once I started on losartan, my eyes became more dry again.

I did believe that the blood pressure medications were a part of the problem with my eyes, but I knew that something else was at play.  After all, I've been on blood pressure medication since around 2006 without the eye pain that just developed this year.

Dry Eyes Part 1: The Punctal Plug Debacle

This is the first in a series of posts about my difficulty with dry and aching eyes this year.  I have spent countless hours searching for answers.  I have also spent a lot of money on various remedies, most of which did nothing.  At multiple points during my journey, I thought that I had found a solution.  In most cases, I was wrong.  I also discovered that some of the remedies caused my eyes to worsen.

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I have had dry eyes for around 20 years, but the situation worsened last year.  My eyes began to be uncomfortably dry late each day.  Still, as far as dry eyes go, my condition was quite minor.  I know that now based on how awful I've had it this year.

I was referred to an ophthalmologist after my Sjӧgren's appointment in January, mainly for testing connected to a new prescription for hydroxychloroquine.  I had an allergic reaction to the medication and quit taking it after just four days.  Nevertheless, I decided to keep my February 26 appointment since I was interested in anything that could help with dry eye.

My eyes were dilated during the exam.  I agreed to get punctal plugs to help with dryness, and numbing drops were used when the plugs were inserted.  My lower tear ducts were blocked so that fewer tears will drain from my eyes. 

Immediately after the appointment, my dry eye became much worse.  I'd say that my condition was easily 10 times worse.  I had noticeable discomfort and terribly dry eyes most of the time from February 26 into April.  This time period was horribly difficult as I searched for answers online. 

I learned that some people have a bad reaction to the dilation fluid and/or to numbing drops.  This is apparently uncommon, but I did find several discussions with people who suffered for months with dry eye caused by an eye exam. 

Long term eye trouble after dilation

Oddly, my eyes fluctuated during the time period from right after my eye exam into late March.  They would go back to nearly how they were before my appointment, and then suddenly, they would be awful again.  I couldn't make sense of it.  [This part is important, and I will mention it again in later posts.  It's important to consider all possibilities, even the ones that seem remote.] 

I was miserable, wondering if this is what the rest of my life would be like.

I was using preservative-free eye drops, which weren't helping at all.  I used an eye ointment at night.  I tried a warm compress.  I tried eyelid wipes.

I figured out quickly that eyelid wipes dry out my eyelids terribly.  Of course.  With Sjӧgren's syndrome, everything dries me out.  I can't use any kind of soap on my face, so I wasn't surprised that the eyelid wipes were a problem.  It was disappointing.

I quit using the eyelid wipes and didn't bother with the warm compress.

I increased my usage of the eye drops, since suggestions online indicated that liberal use of the eye drops would help after dry eye caused by an eye dilation.

I also read online that punctal plugs don't always work and that sometimes they cause inflammation in the eye.  I couldn't rule that out, either.  My next eye appointment was May 28.  I wanted to give the punctal plugs a fair chance before having them removed.  I wondered if I could make it to May 28 with the horrible discomfort. 

I kept searching online for anything that could help.

I read that warm compresses might make dry eye worse in some people.  The suggestion was to use a cold compress.  I used a washcloth moistened by cold water.  It did help, perhaps for half an hour.  That was better than what the eye drops were doing, since they only helped for a few minutes.

I felt like my eyes were getting worse and worse.  I continued searching online for answers.  I finally found some useful information on March 22.

First:

Success story!  My RECOVERY Guide

Here's a screen capture of what this person said didn't work.  Click on the image in order to see it clearly.

This is what stood out to me:

VARIOUS eye drops, including antibiotics, steroids, allergy and hydration drops.

Hydration eyedrops (preservative free) only got me addicted and dependent to the point I was using them every 5 minutes or I was going to go insane.  I stopped them altogether and saw massive improvement after some time.

Huh.  This resonated with me.  I found that I was using the eye drops more and more often with little relief.

I also noted that this person didn't feel that the warm compresses helped and also stated that the eyelid wipes irritated their skin.  Same here.

This is what they said helped:

 Most important:

ABSOLUTELY NO EYEDROPS.  NOTHING.  If you feel dry make yourself cry!

I decided to try to quit using eye drops.  It was counterintuitive, but the eye drops weren't helping, so I had nothing to lose.

I also found out some information about omega-3 fatty acids.  For years, I have been taking fish oil to counteract inflammation and dryness.  In the last year, I also began taking sea buckthorn oil, krill oil, and salmon oil.  My condition improved in various ways with each oil that I added.  

Sea buckthorn oil reduced the inflammation in my mouth, and I have been able to floss without bleeding and pain.

Salmon oil reduced the pain in my legs.  I can't point to anything specific, but I feel that when I added the krill oil that my symptoms overall improved slightly.

What I learned is that I need 2000mg to 4000mg combined of EPA and DHA.  The amount varies depending upon who is giving the advice, which is of course the problem with online advice.  It seems that people with dry eye need around 3000mg combined of EPA and DHA.  I've heard anywhere from 2000mg to 4000mg for Sjӧgren's.

I thought I was taking enough.  I checked my supplements and discovered that I was only taking around 1500mg combined of EPA and DHA.  I searched online and found a high potency fish oil. 

Nordic Naturals Ultimate Omega 2X has 2150mg combined of EPA and DHA.  I purchased it and took 3 soft gels beginning on Saturday.  With what I was already taking, 3 soft gels brought me up to over 4000mg combined of EPA and DHA.  

I mostly went off the eye drops on the morning of March 22.  I noticed that morning that my eyes seemed worse after using the eye drops.  I felt like by noon that my eyes were feeling a little better.  I took the Nordic Naturals Ultimate Omega 2X that afternoon after Amazon delivered it.  My eyes seemed even better after taking the supplement.

On March 23, my eyes were very dry when I woke up, but that's always the case.  I had also read another good piece of advice about eye drops.  Someone said to use them very sparingly and never use so much that it runs out of the eyes.  I had been flushing my eyes, and this person said that they had done that and disrupted their tear film.  On Sunday morning I used eye drops just once, a very small amount in each eye.  Nothing ran out of my eye.

That night, I placed one small drop in each eye.  I did the same on March 24 when I woke up.

I felt like my eyes had improved to the level of dryness that they had prior to my eye appointment.

However, my eyes were awful again by later in the day on March 24.  It seemed that I wasn't making any progress.

I found that my eyes were still bad on March 25, and my use of eye drops was increasing.  I was using them sparingly, but I had to use them at least once every hour or so.

Having to Work While Autoimmune

This was written on May 11.

By necessity, I have to be kind to myself.  In order to be kind to myself, I do things in such a way that they are easier for me.  As a result, what I do might also turn out to be easier for my students.  

My coworkers struggle to understand this, which causes me to have to endure some critical comments.

In one instance, I wasn't feeling well, but nobody knew.  That happens to me multiple days per week.  It's just how my life is.  Anyway, I was really not feeling that great on this one particular day, which was a Monday.  A number of students needed to make up a test.  I didn't feel up to messing with it.  I just didn't.

I told the students who needed to take the test that they could take it that day or the next.  I didn't care.  Of course, this resulted in them choosing the next day, which suited me fine.

My coworker stated later in the class period that I was being too easy on my students.  She didn't know the whole story.

I was fatigued both mentally and physically that day.  As I recall, the mental fatigue and brain fog were more significant on that occasion.  I just didn't feel like getting out the tests, making sure that the students didn't have their phones, and having to keep an eye on them while also working with the students who were not testing.  

Yes, I was being easy... on myself.  I knew that I needed to take it easy.  I didn't need the criticism.

Very recently, another coworker was nitpicking on how we were going to do a certain thing.  I said that I didn't care.  I explained further, saying that the situation with my dry eyes and eye irritation had been so bad that I was near the breaking point.  

They asked, "Are you using eye drops?"

Sigh.  I answered politely and said that I was and that I was also using several other remedies as well.  I needed to continue to treat my condition, and I needed less stress. 

Seriously?  Am I using eye drops?  The obliviousness is incredible.  Of course I'm using eye drops!!!

I don't talk much about my autoimmunity, but I do own the condition.  It's important that others know that I'm dealing with a chronic illness.  However, none of them truly get it.  Am I using eye drops?  Ugh.

Yeah, I use eye drops and tons of supplements, ointments, and lotions for all of my various physical ailments.  Sigh.  I spend lots of money on over-the-counter remedies.  What choice do I have?  Such is autoimmunity.

I also do things in such a way that I can deal with students on 504s and IEPs easier than I otherwise would.  Meaning, I go beyond what is required on the 504 or IEP because it makes my job a little easier.  Needless to say, I take some flak for that as well. 

Math teachers are notorious for being difficult and unyielding.  I don't think like a math teacher.  I'm the unicorn in the math department.  I think like an English teacher, yet I teach math.

The teachers in charge of the special needs kids do tend to place them in my classes because I'm not like the rest of the department.  I do bend the rules, and they appreciate it.  The other math teachers, not so much.

The Ocular Surface Disease Index (OSDI)

I just found the Ocular Surface Disease Index (OSDI) which is a great way to determine how bad your dry eye is.  

The questionnaire is available from many sites.  Follow this link for one example.

This is what it looks like.  Click/tap on the images in order to view them at a higher resolution.

I answered the questions and found that currently I am at 41.7, which means that I have moderate dry eye.  I am better than I was a month ago, but I keep fluctuating between better and worse.

I have had several bad reactions to over-the-counter eye treatments plus problems with blood pressure medications.  I have a number of posts partially written about this entire saga.  I plan to publish them at some point, but I've been waiting for a final resolution.  

As of today, I think my Covid infection back in December worsened the dry eye that I already had from Sjögren's.  Bad reactions to treatments made it worse, and I continue to try to get my eyes to settle down.

April 21, 2026 update:  I answered the questionnaire again, and I scored 51.2.  My ophthalmologist has now referred me to a dry eye doctor for my next appointment.

Bad Reaction to Hydroxychloroquine and Pilocarpine

At my first appointment with rheumatology in early January, I was prescribed two medications for Sjögren's syndrome.  I was prescribed hydroxychloroquine to help with inflammation.  I was also prescribed pilocarpine to help with dry mouth. 

I tried the pilocarpine first, so that I would know if any side effects were caused by it.  I wasn't expecting anything awful to happen.  

1/10/2025: I took three pilocarpine at intervals throughout the day as directed.  They didn't help at all.

1/11/2025:  I again took three pilocarpine with no improvement in moisture level.  Rashes developed and quickly worsened on my upper left arm, stomach, chest, upper back and neck, one leg, right arm, and lower scalp.  The rash consisted of small pinpoint red bumps that itched terribly.

I quit taking the pilocarpine as soon as the rash began.

1/12/2025: I took one dose apiece of four name-brand antihistamines, scattered throughout the day.  The rash worsened.  

1/12/2025: I decided to go ahead and try the hydroxychloroquine since I figured it might calm my body down.  Hydroxychloroquine is an immune suppressant.  I took one capsule, which was half of the prescribed dose.

1/13/2025:  The itching was not as bad.  I took four doses of antihistamines and one capsule of hydroxychloroquine.

1/14/2025:  The itching improved some more.  I took five doses of antihistamines.  I took the third dose of hydroxychloroquine.

1/15/2025:  I took the fourth dose of hydroxychloroquine first thing in the morning and more antihistamines.  My rash and itching continued to improve until afternoon and then exploded again.  Between 4 PM and 5 PM that afternoon, large rashes popped up all over my stomach, chest, entire back, upper hips, upper thighs, neck, and scalp.  The edges of my face began itching, and I had intense itching over most of my body.

This rash was different from the pilopcarpine rash.  The pilocarpine rash consisted of small individual bumps scattered all over my body. The hydroxychloroquine rash consisted of large solid areas of rash that itched even worse than the pilocarpine rash.  It was awful.

I quit taking the hydroxychloroquine immediately.

I cannot overstate how horrific the hydroxychloroquine rash was.  On two different days, I came very close to going to urgent care or to the emergency room.  The itching was unbearable.  I even scratched so hard a couple times that I made myself bleed a little.  After around a week, the rash very slowly began to subside.

To be clear, I had no swelling of the throat.  It was not life-threatening, just unbearable itching.  

All told, the rash lasted for approximately one month as it gradually improved.  I had some temporary scarring that lasted a bit longer.  

As a result of this debacle, I am taking no medication for Sjӧgren's syndrome.  I don't want to be on any of the DMARDs (Disease-Modifying Antirheumatic Drugs), since they all sound dreadful.  

My main problems are dryness of the mouth and eyes.  I do not yet have any organ involvement or neuropathy. 

I have been upping my omega-3 intake to try to improve my dryness.

My First Sjӧgren's Appointment

I like to document my autoimmune journey, mainly for myself, but also because my posts could show up in search results for those seeking information.  Also and perhaps most importantly, we need to educate more people about autoimmune disease so that sufferers aren't gaslighted about their symptoms.  

This is from my November 17 post:

My struggle with dryness continues.  In my post from August 25, I wrote in regard to my summer autoimmune flare:

I feared that I had Sjögren's syndrome, which causes excessive dryness.  I have suspected Sjögren's syndrome for years, but I tested negative in the past.  Most people with Sjögren's syndrome do test negative, so that doesn't rule it out.  I plan to be tested again later this year, just in case the test shows something.

I was tested two weeks ago.  I tested positive for Anti-SSA/Ro antibodies, which are autoantibodies present in around eight different autoimmune diseases, most notably including Sjögren's syndrome.  I am being referred to rheumatology, but I know it is Sjögren's syndrome.  I have the hallmark symptoms.

My new patient appointment with the rheumatologist was on January 6.  I was very nervous about this appointment, for three reasons.  

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First, I didn't know the doctor, and I had no way of knowing whether my experience would be good or bad.  People who have autoimmune diseases quite frequently are gaslighted by their doctors and told to see a psychiatrist.  I'm not kidding.  I have read so many horror stories about treatment for both Hashimoto's (thyroid) and Sjögren's.

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Second, I did not want a lip biopsy done.  Many rheumatologists believe that having a positive blood marker just isn't enough to know if someone has Sjögren's.  This makes no sense, but it's tied to sexism (80% of sufferers are female) and lack of research into autoimmunity (also tied to sexism).  Furthermore, many doctors see complaints of dryness as being unimportant and easily solved by over-the-counter ointments and lotions.  They'd feel differently if they had horrific dryness everywhere inside and outside their body and while being allergic to most all of those products!

So, I had way of knowing if I'd be forced into a lip biopsy.  No way would I ever want one.  It involves cutting into the back of the lower lip and extracting a salivary gland for testing.  I have mouth sensitivity that flares terribly with any sort of mouth trauma.  I had a terrible time after my double-tooth extraction in 2021, and I hate to think about what a lip biopsy would do to me.  Indeed, here are some comments I pulled out of some discussion threads about lip biopsies.  Each paragraph is from a different person.

My lip has been numb, etc for almost a year. Lately it feels a bit better but will never be normal.

It took mine over two months to get feeling again. I still have some numbness.

Mine is still a little numb nearly 14 years later. Sorry.

Over a year. Sensitive to hot and cold. It's like it never healed. Doc says it takes time. Would have never had it if I had known …

My doc won't even do the lip biopsy because they can easily get the wrong spot with a false negative.

Took a good amount of time, was painful, and left my lower lip permanently damaged with numbness.

I had a lip biopsy done 2 1/2 years ago and I have nerve damage. My lip is numb a lot which can make it hard to pronounce words sometimes and I’m always spilling drinks down the front of my shirt. Lately it’s been numb constantly and it’s driving me crazy.

My Dr specifically doesn't order that test because of problems healing and permanent numbing that can happen.

Took a good amount of time, was painful, and left my lower lip permanently damaged with numbness.

My rheumatologist team said it was outdated and barbaric process

I have enough problems without having my lip cut open. 

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Third and what I felt was the most likely outcome, I fully expected to be told that my Sjögren's is too mild to treat and that we needed to wait until I get even worse.  And truly, I believe my condition is mild moving towards moderate, and I am nowhere near as dry or ill as these people in the Sjögren's online discussions are.

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At my appointment, the doctor walked in, introduced himself, sat down in a rolling chair right in front of me, and asked me for my symptoms.  I had memorized a short list of the key things that I knew that I must mention.  I had to get it right.  My mental list was dry eyes and mouth, coughing, dry lips, problems with taste.

This is an approximation of what I told the doctor:

I have dry eyes and dry mouth.  This morning I had trouble opening my eyes when I woke because of how dry they were.  I just put a cough drop in my mouth, because otherwise, I would cough all through this appointment.  My lips are dry and burn all the time, and the only thing I can tolerate putting on them is Vaseline.  My sense of taste is off.  Most of the time I can't taste processed foods properly.  I think it's that I can't taste the flavor chemicals used in processed food.  Sometimes I will have a short stretch where a food tastes fine, then it tastes awful again.

I no doubt don't have the exact order of what I said, nor do I have the exact words.  I do know that I mentioned my sense of taste last, ending with the remark about the chemicals.  The doctor listened to me as I reported my symptoms, and at about the time I began talking about my sense of taste, he wheeled his chair over to the computer and checked a box, which was no doubt the diagnosis. 

He wheeled his chair back over and said, "Dr. ________ referred you to me because you tested positive for Sjögren's syndrome."  He then asked me a few questions.  He wanted to know if I was in any pain from my joints.  My pain has been on the increase during the last six to eight months, ever since the dryness really started ramping up.  I've had a lot of pain in my upper legs, which has been partially improved by adding a salmon oil supplement.  I told him about that. 

He asked another question about my joints and swelling, and I mentioned that I do have some puffiness around some of my finger joints.  I didn't mention arthritis, and I have long believed that I was beginning to develop it.  He looked at my fingers, but made no comment about whether my joint situation is Sjögren's or arthritis.  I don't suppose it matters, since a rheumatologist treats both conditions.

He then proceeded to tell me about Sjögren's and gave me lots of suggestions about things I can do to help with the dryness, 100% of which I already knew and had already long been doing.  I listened politely, relieved that it didn't sound like I would be told to get a lip biopsy.  Whew!

As the doctor talked, he mentioned pilocarpine, which is a drug taken orally that can help with dryness in the mouth and eyes.  I had already learned about it online.  The doctor asked if I wanted to get a prescription for it.  I said that I wanted it.

The doctor then spoke about hydroxychloroquine, which I knew was the main treatment for Sjögren's (and I'm sure most of you have heard of hydroxychloroquine because of events from 2020).  He said that it slows the progression of the disease but doesn't cure it.  Hydroxychloroquine will reduce brain fog and the pain associated with Sjögren's.  He asked if I wanted a prescription for hydroxychloroquine, and I said that I did.

I was leery, because my thyroid medication journey was very difficult, having to go from one bad medication reaction to the next.  Nevertheless, I have to start the journey for Sjögren's and will deal with whatever happens.  

It's supposed to take at least six weeks for pilocarpine to help with dryness.  The hydroxychloroquine will more than likely take at least six months to help, and that's assuming that I don't have a bad reaction to the generic drug.  

I am relieved that my appointment went well and that I ended up with two prescriptions.  My next appointment is in April.  

Surviving Covid the Second Time

This post was published in my main blog, and I have copied it over to this blog and backdated it to December 25, 2024.

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Hello, world!  How are you?  I just recovered from covid, and it was awful!  Yesterday was the first day that I entirely felt like myself again in both mind and body.

Let's recap.  I posted about my blog plans on December 8.  On December 9, I had an unpleasant run-in with a custodian.  I noticed a very large, sticky spill in my classroom.  I am someone who has always cleaned up minor spills and only calls for help if it's blood or a very bad mess.  This was the latter.  It was thick, sticky and gooey, and covered over a six-square-foot area.  I think something spilled the previous week and dried over the weekend.  

The custodian came in and appeared to clean it.  I nearly fell when I walked over to check it after he left the room.  He had spread water all over the dried spill and made no attempt to clean it up. 

To be clear, approximately 25 students were in the classroom with me, and the custodian had left this large area covered with water and no warning sign.

After being moistened, the spill became a thick sludge that was as slick as ice.  I nearly fell and called for the custodian to come back and finish.  They blamed me and called me "rude" for being upset.  

I became tired on December 11, which I thought was a flare from what happened with the custodian.  It might have been, and there's no way of knowing.  On December 13, I felt out of sorts and depressed, which in hindsight I always notice is an early warning sign of me coming down with something.  On the 14th, my nose started running.

The week of December 15 was semester finals week, the very worst timing to get sick.  On the morning of Monday, December 15, I woke up, obviously with a virus but not enough to concern me, at least not for the first 10 minutes I was awake.  The fever then hit me, 101.3 degrees.  I was dismayed and worried.  I didn't want to take a covid test.  I wrestled with the thought for several minutes, even though I knew all along that I had to take the test.  It was positive.

I was disgusted and a bit angry.  I flung down the covid test and glared at it.  I walked around fretfully for about 10 minutes before I entered an absence for the day.  I could not miss semester tests on Wednesday and Thursday, and yet it was quite likely that I would have to be out.

I went to the school, wearing a KN95 mask, and got my classroom ready.  I came home, feeling awful.  I visited the CDC's site and read all the current information on covid.  I concluded that I could return to school once my fever went down without the aid of medication, so long as my symptoms were improving and I wore a mask.  I think that's a bit too lenient, but it was in line with what the CDC says.  My fever came down on Tuesday morning, and I did feel a little better.  I returned on Wednesday, masked and feeling awful.  

Students can download an app called Photomath where they can photograph any math problem and get all of the steps and the answer.  If I hadn't been present, many of my students would have used their phones to cheat on the test.  No, sir.  I wasn't going to allow that.  I fight it constantly.  Students are very sneaky.

By Thursday afternoon, wearing the mask was absolute torture, and I felt terrible.  I got the last grades entered, left a big mess all over my desk and floor, and walked out the door immediately after the bell rang to dismiss.  I flung things all over as I worked on grades the last two hours on Thursday due to my distress, so I will have quite a mess to pick up on January 6.  Lots of tests were dropped to the floor as I finished with them.

In brief summary of the virus, I had a horrific cough to the point that I lost control of multiple bodily functions as I coughed.  I'll let you figure out what that might mean.  I had terrible acid reflux, and a nose that ran like a faucet, meaning out of nowhere a complete liquid stream would run out of my nose and onto my clothing.  I was very tired and slept a lot.  Those were my symptoms.

I was definitely sicker this time than the first time I had covid.  I was getting better by December 22.  On December 24, I felt pretty normal mentally and physically.  My sense of taste is still off.  I am not coughing at all.  It's odd that I coughed for less than a week with this bout of covid, but in October, I had a mild virus that caused terrible coughing that lasted for six weeks.  Huh.  Who would have thought?

Today is the first day I can type well.  I started working on my blog posts again on Sunday, but my typing was bad.  I guess I was hitting the wrong keys.  I ended up with typos every few words.  I've done much better today.

I got my post on the musty books finished yesterday.  The one on musty books is lengthy and involved, and I spent around three hours creating it.  I'm soon going to work on my Hidden Clues posts.  It looks like what I planned for one post needs to be two posts.  I also will be listing books on eBay and Etsy. 

I have already listed some books on eBay, and I have another small stack pulled.  I'm going to read some more of the teen book that I found earlier today.  It's another apocalyse novel.  I haven't read one of those in a while.

The book listings and the blog posts are my focus during the next few days.  I go back and forth on what I work on.  I work a little here and a little there, and eventually, I'll get it all done.  Hopefully by next week, I'll post one of the blog posts.  I like to let them sit for a few days and read over them a few times.  Typos are a huge problem for me right now, even though I'm much improved.  I try to get all of them corrected if I possibly can.

If there are still any typos in this post, then you know why.

Positive Test Result for Sjogren's Syndrome

The last few months have been rough with multiple events causing increases in inflammation.  School started, we have new textbooks, I got my Covid vaccine, and I caught three or four viruses in September and October.  The viruses ran together, so I'm not sure how many I had.  The one from late October caused a terrible cough which I still have.

My struggle with dryness continues.  In my post from August 25, I wrote in regard to my summer autoimmune flare:

I feared that I had Sjögren's syndrome, which causes excessive dryness.  I have suspected Sjögren's syndrome for years, but I tested negative in the past.  Most people with Sjögren's syndrome do test negative, so that doesn't rule it out.  I plan to be tested again later this year, just in case the test shows something.

I was tested two weeks ago.  I tested positive for Anti-SSA/Ro antibodies, which are autoantibodies present in around eight different autoimmune diseases, most notably including Sjögren's syndrome.  I am being referred to rheumatology, but I know it is Sjögren's syndrome.  I have the hallmark symptoms.