Friday, April 21, 2017

Back to back...

Thursday was my next appointment with the rheumatologist.  Even though I know better, I went over my blood work and noted two things of interest:  results showing kidney damage and muscle damage.    I want my blood test results to be normal.  SIGH.

To be honest, I have avoided learning much about Sjogren's Syndrome.  This whole new turn in my medical journey has not been one that I have handled with any amount of grace.  I have, however, not actually, technically had a hissy fit over it.  I've been to busy trying to deal with living with Sjogren's whilst being overwhelmed.

Seeing the blood work, though, made me realize it was past time that I start reading.  But I wanted a gentle start.  I went looking on Facebook for a support group and found many strident ones that sounded a lot like that first dysautonomia one.  Then I stumbled across this Sjogren's "sisters" group and I got my "gentle" introduction.

I will say that the one truly disturbing discovery was how many of them had dentures!  The little I read about how a dry mouth can cause tooth decay came crashing home.  The rheumatologist had told me, on my first visit, that I needed to switch to a baking soda toothpaste.  No problem! I thought.  I've  been using Arm & Hammer baking soda and peroxide toothpaste for years and years.  My family (and other visitors) have complained when asking to borrow my toothpaste because it tastes rather terrible.  Hah!  "Terrible" has at least kept my teeth safe thus far.  However, I learned I also should be seeing a dentist once a quarter.  I haven't gone since I moved here.  I am not sure how to swing that change.

I read several posts on how Sjogren's affects the kidneys by folk who were experiencing that, so I learned a few questions I should be asking.

When I saw the blood work, I immediately thought of the Celebrex.  I remain worried that I will be taken off the only pain medication that has ever helped my arthritis.  And I was rightly so because my doctor brought that up.  But she ultimately said that discussion would lie with a specialist if warranted.  She wants to repeat the blood work on my kidneys in six weeks to make sure this was not a blip.  If it remains poor, then she would like my GP to follow up and manage that problem, coordinating with a specialist.  That sounded reasonable and fair.

We talked about my eyes quite a bit and she walked me through two successive next steps if the Restasis does not start working.  I liked knowing what could be coming.  She was adamant, though, in her admonishment that I not miss the scheduled drops that I am on now ... both the Restasis and the three other drops.  She said not to let two hours slide into three.  Be vigilant!  SIGH.

We talked about the Reynaud's in my hands and feet, with my expressing my frustration with how hard it is to keep the latter warm.  She suggested I consider hunting gear for my feet and hands as that might provide a better opportunity for success.  I, uhm, don't know any hunting stores!

I did the best I ever have with the physical exam, and I've only met her twice.  So, I am deeply thankful for that.  She also was rather encouraging to me because she observed that it must be hard handling my illnesses and a pacemaker!  She's the first doctor who showed an understanding that having a pacemaker might be a difficult adjustment ... one that might be long in coming.

It was a good visit.

Today, I had my pacemaker check appointment.  I think the best way to explain how that went was to say that the tech wore GREEN just for me!  A really good moment came when, after explaining that Georgie was just not helping me whilst walking, riding the recumbent bike, or standing whilst cooking, the movement sensor screen that she checked showed that the highest the sensor had raised my heart was 60 beats per minutes (BPM).  HAH!  Data backed me up!!  Good times, man!

I do not do well when I have to have leads attached to me (being exposed), and I most decidedly do not do well with the pacemaker check tests.  I start to panic when my heart is forced to beat faster and really lose it when the ventricular chambers are tested.  The tech, knowing this, very deliberately asked me thinking sort of questions just as I started to feel the testing.  The distraction made this testing session go better than any of the others.

The CLS setting is based on my own heart, because it involves learning algorithms for all the settings based on how my heart responds thereafter.  So, the changes we made will take a while to evidence whether or not they are of benefit to me.  I see the cardiologist in six weeks and he can make tweaks or I can go back into the pacemaker clinic.  This main setting is best for folk who faint.  However, it makes adjusting the settings for movement difficult.  I need to be patient.

Beforehand, I asked for prayer on Facebook, because today marks 44 days without a meltdown and, because of the magnitude of my last meltdown, 44 days since I cut.  I was so fearful of how I would respond to the shame I feel when being hooked up with the cardiac monitoring leads that I vomited as I was getting ready.

As a reminder, the ophthalmologist, upon seeing me so agitated, suggested that I bring headphones and listen to music during my medical appointments.  I took her advice and added music to my arsenal that now includes a weighted blanket, a diffuser necklace pendent, a squishy ball, a frog ring, a photo of Amos, and music.  She suggested Bach, which was the same suggestion for trying to use music in pain management.  I do not yet have any Bach, but I brought the soundtrack to my beloved movie "The Martian," a gift from my dear friend Mary.  So, I had a great orchestral score and a reminder of her love and affection.  I kept one earbud in during the entire appointment so that I could hear the music as I struggled to get through the difficult moments.

Gosh, there goes Georgie!
Should I mention how often she goes off whilst I blog??

Back-to-back medical appointments are very difficult for me, draining both physically and mentally.  This is especially so whilst I am so very overwhelmed with all that has changed in my life since last fall.  However, I really could not asked for better appointments.  I mean, they could have been even better, but they were most definitely better than I could ever have imagined at this point.

Two days. Two appointments.
Doctors who listened and who showed compassion.
Fairly good communicating on my part.  Great communicating on their part..
Plans for next steps to help assuage my angst.
No meltdowns.

My next appointment is on the 3rd, though Amos has his on the 2nd.  Tuesday, the 25th, I am getting up early to ferry my realtor to her very first colonoscopy.  I hope to be able to sleep in my car whilst she is being tortured, but I might have to stay awake inside because the clinic where she's going is pretty adamant (thus far) about a patient's ride being on hand at all times.  The 26th Electrician Man is coming to service my HVAC system and hang the replacement fan for my bedroom.  And, soon, I'll be calling Whirlpool because my new refrigerator is making funny noise.  SIGH.

All I want to do is rest after yesterday and today, but I have several things on tap in the coming weeks.

Lord, have mercy.
Christ, have mercy.
Lord, have mercy.

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