Shame...

Today was an extremely draining day ... actually it still is one.

After a rough period in the early morning, lots of nausea and writhing, I slept longer than usual.  I had left the tasks of updating my symptoms calendar and finalizing my office visit notes for today, to keep  my brain occupied before my appointment.  Sleeping late meant that I actually had just barely enough time for both tasks, to cajole Amos into conducting his major business, and to get dressed before it was time to leave.

On the drive over, I called Mary and her encouragement went a long way toward bolstering me for my appointment.  The surgeon was running late, so we had a good visit.  Then, because it was such a long time, Mary went back to her own tasks and I waited by myself.  The first bit that went wrong after that was I did not know the staff person who took me back.  My anxiety started rising.

I did my nervous chatting whilst she took my vitals and went over medications, but then she gave me a form to sign since I was a medicare patient.  My surgeon in in my plan.  In fact, she is my preferred doctor, so I only have a co-pay to visit her.  I never had to sign a form before and I was confused.

Stranger.
Change.
Confusion.

I became very agitated and ended up melting down, wondering why it was that at no point of the more than hour I spent waiting did anyone mention a new form.  The form has this dollar amount I was agreeing to pay, which still doesn't make sense to me.  I was frustrated and confused and scared and all my rehearsing of thoughts and words flew out the window.  I was an utter mess by the time the surgeon entered.  SIGH.

The good thing is that she does know me, she does not judge me, and she is really great at waiting out my anxiety, which did help me to calm down.  Even though I was shaking violently and had tears streaming down my cheeks, she did not make me sit there and breathe until I was calm.  My surgeon understands that getting down to business is far more calming to me that breathing exercises.

The first two things on my lists were prescriptions.  The trigger I am really still incapable of navigating (or enduring safely) is a sensitivity issue on my body that the dysautonomia makes worse. So, I have a prescription of lidocaine for it.  I needed a refill.  The next item was getting a new prescription for withdrawing from Xanax.  I felt utterly STUPID for asking, given that I was still shaking and failing to hold back tears, but I plunged ahead.  I showed her my thought book and what I have been working on and my schedule for reducing my use of Xanax and that I was ready to step-down from half a dose to a quarter a dose and the smaller pill would make that easier.

Well, it turns out the my surgeon is very, very, very anti-Xanax.  She was HAPPY to write me the prescription and was very glad that I had come as far as I have.  She also said that it made absolute sense that I felt more positive, brighter somehow, without the Xanax.  When I was talking with Mary, she helped me figure out that what I wanted most was Dr. Kennedy's support in what I was attempting and Mary told me it was okay to say that directly.  Not only did I get her support, but she asked if she could hug me.  And then she did.  Knowing that what I wanted and feared most was behind me, made the rest of the visit easier.

We have a plan.
I have a plan.
Plans are WONDERFUL to me.

My next exam is scheduled for October and will be modified to avoid pain.  I am to stop avoiding her (admonishment well-deserved) and need to see her twice a year to review medications and symptoms.  And she is going to consult with the Integrated Medicine specialist with regard to the thyroid issues.

We discussed the surgery to help with bleeding, but not the repair surgery.  Since the Larin works for me without side effects, given everything else, I am going to continue re-evaluating on an annual basis for the next three years.  So, for example, next February, a year from when I tried to get off of the Larin, I will try again and see what happens.  If we decided to go ahead, she outlined the steps (including tests) that are a precursor to the surgery.  We also talked about how to approach anesthesia.  So, for me, I have both short-term and long-term options and know that she understands what I want in case it is not possible for me to voice that.

Walking out, I broke down in tears again and was shaking so violently that I fell to the ground.  I wanted something I haven't needed in a long while:  to stuff myself in the corner of the closet with Amos.  It took me a while to figure out that I was drowning in shame at the thought of just how badly I melted down with the two staff I did not know and who were trying to get me to sign the form.  The thought of my self at that moment embarrassed me.  I felt shame.  And shame, in any form, for me, is one of my top triggers for which I have little recourse of remediation and great fear for where the shame might lead me.

I called Becky and talked (or tried to listen) with her for a while.  Every few minutes, tremors would wash over me and I would start to cry again.  I wasn't just ashamed. I was overwhelmed and very, very, very frightened.

Uhm, well, I don't like those feelings.

Before calling Becky, I called Target to see if they had the lower dose of Xanax in stock.  Once I got there, I told the pharmacists that I was upset and prone to tears but not about anything that had to do with why I was there.  So kind they both are.  All the Target pharmacy staff.  They took my ID and processed the order and then sent me off for buttermilk, because I was chatting nervously about bran muffins.

Even now, my heart rate has not come down all that much.  You would think the fact that after fetching the lower dose of Xanax, I stopped by Walmart and found a pork sirloin roast for the pulled pork would have helped settled me.  However, I am not settled.  My mind has been able to work out what I am feeling and why and has found some comfort in hearing Becky tell me it was okay to be embarrassed about melting down in public.  But my body is not yet recovered.

Thinking about the description of the brain and trauma in The Courage to Heal and what the cardiologist talks to me about, I am 99.99% certain the rush of adrenaline and norepinephrine in the fight or flight, feeling trapped and terrified time with the new staff and that darned form is going to mean having to be patient with my body.  A history of abuse makes recovering from those chemicals difficult and dysautnomia skews everything. I honestly cannot repeat why it is that when I am physically stress my systolic pressure skyrockets and my diastolic pressure plummets, which makes my pulse pressure far two wide, but it is two different autonomic processes that are mis-firing or being exaggerated or however you want to put it.  Both/and maybe.

Yes, I have the super special balsam and cedar candle burning. I picked up the sodium fest salad from Panera, and my super special playlist is filling the air around me.  However, I am still like the proverbial aspen leaf in the wind.  SIGH.

I will admit, too, that my mind and thoughts are churning because as excited as I am to take the next step (dose reduction) in getting off of Xanax, I am not much interested in going through the migraine and other symptoms I battled.  Frankly, I have been constant-headache-free for a short while again and have reveled in the respite.  Who knows.  Maybe the next reduction will not be as bad.  Or maybe it will be worse.  The bottom line is that it is good to be trying and I have a doctor who is supporting me in the effort.  The latter is what I have longed for ... deeply.  Someone who looks at me, sees me, and considers lesser medication a laudable and healthy goal.

I also do not know what to do with what I realized about shame being a top tier, not-really-remediated trigger.  I do not know who I can talk with or how I can get at understanding or accepting my mental and physical reaction to shame ... or the fear over how much shame is a tipping point for me, one that can lead me tumbling back in the abyss that I have been climbing out of over the past four years.

I don't want to go back there...