Remind me of this day...

I am still very, very, very  poor at identifying emotions, but I actually think I might be feeling hope ... deep hope.

While I had to drive home in near whiteout conditions, nearly scaring me to death, I made it to the cardiologist appointment.  Honestly, I was admonished and happily so.  What I didn't really understand is that he has other dysautonomia patients and he understands the wonkiness.  I truly failed to communicate the problems I was having with the now officially diagnosis theophylline toxicity.  For had I done so, he would have worked me in immediately.  However, he also apologized to me for failing to keep in contact and for letting so long a time go by without reaching out to make sure I was doing okay.

The three things that are most important to me are what comprise the targets of his action plan.  The first is to find a level of theophylline that will keep the nighttime asthma attacks cropping up here and there and help with the fainting, but also to not have the symptoms I cannot tolerate.  The second is to see if there is a blood pressure medication I can take at low doses to help bring down some of the really high numbers and narrow the too-wide pulse pressure.  The third is to address the fluid retention in my legs and the weight gain.

What really sold me is that he said we needed to develop a treatment protocol for an asthma attack when I am well so that in an emergency, the medications that I can no longer tolerate will not be given.  I have been genuinely worried about what would happen if I had to go to an emergency room and I was given albuterol.  Since any sort of stress now sends my heart rate and blood pressure rising up, I shudder at the thought of adding drugs that do the same at the same time.

I was also given the instructions for setting up an account and will be checking in via email once a week or so.  Truly, when the LC speaks of the goodness of God being an overflowing fountain, I thought of being in the room.

Especially, this came to mind because I asked to see the nurse first, so I could rehearse what I wanted to say with her.  And since I was a work-in appointment, late after the office had actually closed, the cardiologist came straight in.  I had to talk directly with him.  Afterwards, the nurse said she was glad it worked out that way so that I could learn to trust that he will listen to me.

Maybe, really, the bestest part was that the cardiologist said that symptoms are really more important than a physical exam when it comes to dysautonomia patients.  He did feel my legs and ankles, but primarily he concentrated on the symptoms.  He said that I will still have good days and bad days, but maybe we could make the bad days more bearable.

Mercy.

I was able to get the CVS pharmacy manager to replace the improperly mixed erythromycin.
I am going to get some instruction about the spiritual things that have been distressing me.
Day One of my cycle held no hormone surges or Niagara Falls of emotion for me.

Heaps of mercy.

My friend Celia very kindly mentioned to me that I ought to get a medical alert bracelet.  As I typed that, it strikes me that she might possibly mentioned that to me before and, tonight, kindly did not point out my forgetting the need.

Did you know that you can get a medical alert bracelet with bling???  I like the idea, but wonder if the bling would keep medical personnel from noticing it. Here is all GREEN bling that can be added to an engraved plate.  I found a plain Jane one that was GREEN, though.  What I like is that I could get a cross charm to go on it.  I no longer wear my cross 24/7 because of this weird feeling-like-I-am-choking-thing that happens when I have things near my neck.  I have missed it.  I would like to have a cross on me all the time again.  However, I think a bangle one would be the least noticeable on my wrist if I wore it 24/7, but it has very little room for medical notes.  You're supposed to have a medical alert wallet card, too, I think.

Anyway, her interaction with me about styles and such was a gentle reminder about taking this life of mine seriously.

That was the admonishment I received at the cardiologist, in a way.  The cardiologist told me that it was good I stopped taking the theophylline when I did and made do with a half dose when I realized I wasn't safe without it.  But he also asked me if I were not able to help myself, would I actually ask for help.  It was a kind and gentle question to point out I should have asked for help.  His nurse also pointed out that it seemed to her I need to work more on it being okay with me that I am how I am, instead of trying to be what I will never get back to being.  It took me a long while to understand what she was saying, but recently I admitted to someone that I came to the conclusion that it was okay that I am not over my fear of large dogs and terror of pit bulls.  Some things about me will get better, but some, given the anxiety brought on by Dystauonomia, will not.  In other words, the PTSD is better, is somewhat managed.  But I will always be an anxious person now.  Period.  That will not change, baring some great medical miraculous breakthrough in a field where very, very, very research is being conducted.

It was a wild day.
A merciful day.
A day in which I was also reminded that I am not the only one who misses Texas.  And Texas food.

And, yes, Firewood Man is coming on the morrow to dig me out again.  Shoveling the rather large amount of snow that unexpectedly fell today is not something I should be doing.  And it is okay if I choose to wait on the blood work until the roads are clear.  It is okay to say that one spate of driving on the snow is enough for me to have to face.

It's okay.
It's okay to be afraid.
It's okay to be ill.
It's okay to want to hear that I am forgiven.
It's okay.


I am Yours, Lord.  Save me!