Monday, December 21, 2015

Not proper...

The past week has been a whirlwind of visit prep and naps ... and a few meltdowns.  I would give most anything to be able to pick up Amos and hold him.  Having him curl up in my lap is just not the same.  Five more weeks to go.

I have been cooking up a storm.  So much so, all three of my freezers are full ... mostly.  I held off making the apple cider donut cake because to make it so early I would need to freeze it.  However, I was able to make Santa Fe Soup, Chipotle Chicken Chili, Beef Stew with Beer, Red and Green Stuffed Shells, Spicy Dr. Pepper Pulled Pork, and Spicy Pulled Chicken 2.0.  I also baked Brown Sugar Oatmeal Bars and Creamy Lemon Crumb Squares.  And ... I made my first candy!  Salted Whiskey Caramels!!

I made the stuffed shells because my family is a glutton for lasagna.  I have never made that, but this is a recent Pioneer Woman recipe and it looked doable to me, although I was very much intimidated by the thought of making these.  I also, as you can see, ended up with another half pan because there were leftover shells and sauce and stuffing.  It was my first time cooking with fresh spinach.

I saw the recipe for the salted caramels and thought about it for days and days, whilst I slogged through the main dishes and desserts.  I wondered how I could make it without a candy thermometer and watched several YouTube videos about water baths and such.  Then I remembered this gift I got that I did not understand and put away without really investigating it ... much to my shame.  It is a Thermapen thermometer, GREEN no less, and was an exceptionally fine gift.  I believe the accuracy in knowing your temperature surely helps with candy because mine turned out bloody fantastic the first time.

However, I did learn the hard way that wax paper is not a good substitute for parchment paper when it comes to making caramels.  I spent at least as much, if not more, time peeling it off the back of the caramels than I did making them in the first place.  My friend Caryl suggested using a silicone baking mat. I would like to see if I could get one for this pan, but I wonder about the sides, because they would still stick to the pan.  Maybe cutting them away from the sides would help???

Although I am so very exhausted from all the preparation and the cooking that I am dull-witted and bleary-eyed, I am very much grateful, in a way, for oft being so busy and so weary that I had little time for thinking.

I have much to ponder.

I have struggled, mightily, with the visit to the surgeon.  Given the randomness of my symptom, albeit it severe, has her thinking it is just more dysautonomia wretchedness.  She thinks the bleeding, although not normal, is stress from the surgery.  And she thinks that I do not appreciate just how hard on my body it was for me, in particular, to have my heart messed with to get a pacemaker.

"It saved your life, Myrtle.  It is saving your life even now!"

I still cannot wrap my mind around just how much worse the bradycardia has gotten over the past five years.  When I was diagnosed, the bradycardia was mainly an issue when I was lying down.  Now, it is the majority of the time, even standing.  That is why my heart rate is normally just 60, the lower setting on the pacemaker.  Without the pacemaker, my heart would not keep me alive.  Using the theophylline to raise my heart rate was no longer working for me, given the spikes in both blood pressure and heart rate, which were more dangerous than I appreciated.

The surgeon was very, very serious with me.
But she was also exuberant.
And it is the latter that I find difficult to absorb.

She was laughing and joyous to see the change in me since I saw her in October.  My rather distressing shortness of breath was not lost on her, and she, in particular, noted its absence.  She also perused my medical records, since she is on the same system, and noted the improvement in my heart function. So much good has come from the pacemaker.  However, I am simply not used to folk being so very, very happy for me, celebrating my gains ... noticing them even.  In my family, I am utterly alone with my illness and my doctor was very emphatic that, here in Fort Wayne, I have two doctors at least (she was categorizing my cardiologist as such) who are rooting for me, wanting me to be as better as I can be, willing to work hard to help me, if need be.  Such words!

What floored me is that she said, in such an open and genuine tone, that I was her best Christmas present already, no matter what else was beneath her tree.  WOW!

But we also talked about how deeply I struggle with the ventricle pacing.  I very much want to open my incision myself and pull it out of my chest at times.  I do not like the feel of the electricity, but more so I fear and loathe the pressure that I feel in my chest and throat, the sensation of choking.  It is also difficult knowing that all of that is due to a machine ... a machine I was led to believe I wouldn't even know was there aside from, perhaps, a bulge in my chest.

On the left side, the pacemaker is very, very, very prominent.  I can almost curl my fingertips beneath it.  And it hurts.  It hurts more than it did last week.  More.  I do not think it should be hurting more.  I do know that pacemakers can be repositioned, but I cannot fathom going back to the hospital.

As it is, I still greatly fear that I have dislodged one of my leads.  Georgie's self tests have felt a bit different the last two nights.  It is near impossible not to reach out with my left arm.  I have not done the lifting, but I have done some pulling and pushing before I learned that was just as bad.  And if my right hand is occupied, I automatically reach out with my left.  I will not know until the 7th, when I see the cardiologist, if I have done something (I can be x-rayed then).  My only hope is that I have yet to see my heart below 60.  Nor has it, with all the extra stair walking up and down, spiked too high.  Perhaps the leads, at least, are okay.

As to the pacing and the placement, I see no hope for those.

My surgeon was a bit ... harsh ... with me.  She told me that I had a choice:  choice to hate Georgie and what I must face or be thankful, every day, for her working to save my life.  Put it that way, who wouldn't choose the latter?  "But how?," I ask.  Seriously.  I don't know how to escape the fear and loathing that overwhelms me.

Until I find a way to absorb the ventricle pacing without distraction, I am not comfortable driving.  That is a true burden.  I want to be safe and sensible.  Again ... how do I do this????


I asked the surgeon if it was okay that I wanted to speak with her, to have her listen to me.  She said that it was, but if I needed that again, it would be helpful if I would do so on Wednesdays and be her last appointment before she heads to surgery.  Easy condition to which to agree.  I am so very, very, very thankful that God provided her for me, even if she never ends up repairing my internal damage.

I very much wish I could speak to the cardiologist like that.  But how do I ask for a sooner appointment?  How do I say that I genuinely struggle with the desire to rip out the pacemaker because of what I experience?  How can I tell him that my fear and loathing consumes me at times, despite understanding what good the pacemaker is doing?  How do I ask him to somehow speak to me the words that will help me bear those sensations?

The physicality of Dysautonomia is the bane of my existence.  More so than its wretchedness, I think.  being so blooming aware of so much of my bodily processes that normally would go unnoticed, along with the continual battle with nerve pain.  I did think that, once I had the pacemaker, I would no longer be aware of my heart.  But I still am.  Georgie even paces me more prominently when I lie on my right side.  However, even though me and my heart both clearly prefer me sleeping on my left side, Georgie's presence is still so

And, if I may be blunt, I have not been able to wear a bra, without pain, yet.  So, I wear the bandeau unless I am going out in public.  But being aware of my female attributes does not help with the flashbacks I am experiencing.  How do I say to the cardiologist:  I NEED TO BE ABLE TO WEAR A BRA AGAIN!

I feel so guilty that I am not over the moon with the gains.  I feel the failure because I battle so much the challenges.  I feel ashamed that I am not a proper cardiology patient.

No, not at all....

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