Friday, January 12, 2018

a long day...

Today was to be another snowmageddon, but it never materialized.  Going with how I am struggling and my GP's permission to delay the mammogram, I called and canceled it.  Staying home from that was an enormous relief.

My GP appointment yesterday was rather productive, if discouraging for me.  The main thing I avoided discussing in depth was the whole problem of the chest CT showing a finding of interstitial lung disease.  In short, my GP wanted to talk with me first before consulting with the rheumatologist about treatment.  She also wrote a referral to a pulmonologist.  The soonest available appointment is in April.

The best part of the appointment, even though it made me feel like a blooming idiot was when we were discussing the dry coughing fits I am having, primarily in the morning when I am trying to sleep.  I know it is not my asthma and I am fairly certain it is not sinus drainage because my sinuses are severely dry from Sjögren's Syndrome.  I felt like a failure for not being able to manage the problem and I have been quite despairing about it.  I sort of lose it when I could be sleeping (i.e., the nausea has abated) but cannot because of the coughing.  Well, my GP pointed out that I have severe dryness in my throat and by the morning, it is most dry since I do not hydrate in my sleep.  Lightbulb.  Ohhhhhhhhh! Yes!

It is like my eyes. Because I no longer had to use hot compresses just to get through the day, I thought the dryness in my eyes was better. It is and it isn't. Learning that it isn't at my eye appointment last week was a bit devastating.  I am not feeling all that positive about having my tear ducts cauterized closed. 

Because I have been so much better at swallowing my pills, I thought the dryness in my throat was better. It is and it isn't. And, by golly, in the early morning to noonish when I'm trying to get some better sleep in, the dryness has me coughing up a storm. I was quite despairing about it when the tesselon pearls, chloroseptic, and cepacol all started to fall short and the coughing grew worse. But now that I know that my problem is dryness I can try to work the problem with that in mind.

Last night, I drank more before bed and drank a little bit every time I got out of bed to fetch fresh ice packs.  Before the integrative medicine specialist started me on n-actyl glucosamine and hyaluronic acid for the dryness, my GP has me trying carafate, dissolved into a slurry, to see if I can coat my throat.  It is the weirdest and most frustrating thing to have the driest of throats and have water quench the agony not at all.  The problem is needing your body hydrate the tissue from the inside out and having your body give up that process.

Buy, my goodness, why didn't I figure this out?????

Yesterday, I was grumpy and tired, having already done too much before seeing my most amazing doctor.  I had been to the orthodontist to have the broken retainer removed, to Best Buy to drop off my broken television for recycling, to the pharmacy, and to Walmart for groceries.  And, of course, having my hands shock me for 84 days at that point, going nuts dealing with that pain just makes everything worse.  Mostly, though, I have been felled by both my parents rejection when I asked for help with my medical expenses and the bad news about my lungs and eyes.  

I do want to think of something I can do next month to thank my doctor for being gracious about my grumpiness.  SIGH.

After the end of my 90-minute appointment, I walked outside and was shocked at how pitch dark it was.  And it was raining.  It was a bad day for my vision and, having started my journey home, became rather frightened about making it there safely.  I called my sister then Becky and then my  friend Mary trying to find someone to help me.  With six children at dinnertime, I thought it was a bit selfish of me to ask her for help, but I did.  But she, in a beautiful act of mercy, did help, staying with me on the phone as I drove through the rain, struggling to see the street signs and battling fear the entire way.

It was a long and trying day.  But I had the problem with my broken retainer resolved, I no longer have a television riding around in the back of my Highlander, I have milk milk enough to last through any snow in the next two weeks, I am ready to fill my two-week medication holders on Sunday, and I was blessed both by the care of my doctor and my very dear friend.  So, I am working on viewing it as a good day.

Is it even possible for any day you stock up on milk to be a truly bad day??

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