Saturday, September 08, 2018

Medical news...

I had good news that was also bad news at the cardiologist on Tuesday.  You see, I've had a significant increase in palpitations over the past few months.  I have the heart pounding ones and what I call flip-flops ... sort of like that feeling when your stomach drops out whilst swinging really high.

When they happen, they consume your senses and everything else fades away.  It is difficult to concentrate on anything and it is practically impossible to sleep.  Yes, I have had many a night now where I could not sleep because of the palpitations.

So, the good news is that they are not from my heart rhythms.  Instead, they are from dysautonomia.  My heart is having to work overly hard and I am feeling that.  Yes, being that they are from dysautonomia, there is nothing to be done about them.

There is ever so much in my life that I simply must endure.  The palpitations.  The fainting and near-fainting.  The violent waves of nausea.  The pain.  The exhaustion.  The sickness with bowl movements.  The brain fog.  The blood sugar crashes.  I could go on and on, but even typing those things brings on the despair that is my constant companion.  Despair and fear.

The pre-syncope (near-fainting), well, he believes it is because of the amlodepine that I am taking.  DON'T MESS WITH MY AMLODIPINE!  I practically shouted at him.  Well, not really.  I only repeated the word "No" every time he started trying to suggest that I reduce that medication.

Okay.  So, blood pressure medication.  You have beta blockers and calcium channel blockers.  Normally, or at least until recently, you were not prescribed both classes.  But, back in February, the Raynaud's Syndrome started affecting my fingers.  I went to my GP and begged her to try the drug, the calcium channel blocker she had mentioned: amlodipine.  It took me a long, long time to learn to say that drug, but it now rolls off my tongue with much affection.  It is beloved.

Rare.  It is so very rare to actually have something ... fixed ... when you live with chronic illness.  But amlodipine did that for me.  Yes, my blood pressure dropped even lower, but I acclimated to it and my hands when from blue and numb and hardly useable to warm and just peachy king.  DON'T MESS WITH THAT!

We went back and forth about lowering my amlodipine before he suggested that we try lowering the beta blocker: metoprolol.  He said that we could cut it in half.  IMMEDIATELY, I became deflated, thinking about how I had just received another three-month supply and I was exhausted at the thought of cutting all of those pills.  I said as much.  He gently reminded me that I take it twice a day.  He was talking about taking it once a day.  Oh.  Stupid Myrtle.  "Yes, I can try that."

I am not sure if the change has helped or not.  Yes, I have had few pre-syncope episodes.  However, the ones I have are more severe.  SIGH.

So, that was Tuesday's appointment.

Well, three was also the news that I could possibly FINALLY be approved for an MRI by the radiologist.  In fact, I learned that, it appears, a whole lot of miscommunication meant that I could have not have had the spinal tap.  SIGH.  In a nutshell, the cardiologist said that all my neurologist needs to do is call the radiologist and say that she needs the MRI.  He said he would call her and let her know.

Of course, things don't work out that easily for me, eh?

Next week, I see the rheumatologist, so Wednesday I did the blood work for that visit.  Sadly, it showed that I have taken a HUGE step back with my kidneys.  All that I have gained by cutting back on the Celebrex and drinking more water and such things are gone.  My numbers are the worst they've been.  And that means that I would not be cleared for an MRI with contrast, which is what I need.

I was rather worried about my appointment with my GP.  I new the end result would be to give up the Celebrex completely right now.  At least I have the steroids to help with the pain.  SIGH.

I tried to talk with her about the exhaustion.  I've been trying to do that for several months now.  She is aware of it, but I still haven't really communicated to her just how bad it is gotten.  I did ask about medication.  The option she came up with is $50 a month.  I just don't have that.  At all.

I feel as if my whole life has become about sleep.  I mean, I can only be up for a few hours before needing to sleep again.  With visitors, the adrenaline of having company can keep me going.  Then, they leave ... and I crash.  Hard.

Today, I awoke, took Amos outside, walked on the treadmill, showered, visited with my realtor, and crashed for two hours.  So exhausted after doing so little.  But that was not so little to me.

After my GP appointment, I called Becky because the news about my kidneys is just so very devastating to me.  And I was deeply despairing over not being able to make myself clear about just how bad the exhaustion has become ... though I did not bring that up with Becky.  It is a silent grief of sorts.

And I'm still worried about my lungs.

I had planned the monthly shopping fairly carefully.  I picked a few things at Target that were on sale (and one that was not ... and not on my list).   I had a $10 credit at Meijer to use.  Then, at Walmart, I had two prescriptions ready and my main grocery order for pick up.  Between the two, I also picked up some deli meat.  I had my spending down to the penny, though the pennies changed on the fly.  I had planned on using the money for the week on a meal out, but ended up switching it to some more groceries, including the deli meat.  I thought I had the energy down, too, but I didn't.  By the time I got home, my head was buzzing.  Literally buzzing.

I was so very, very tired.
I still am.
Always now.

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