Flip-flops and fluttering...

I have wanted to write about the doctor's appointment Friday before last, but I am finding it difficult to do so.  Just as I am finding it difficult to ... well ... have it be over.  It is not.  Not yet over.  SIGH.

It was nothing short of traumatic for me, but also, I believe, for my doctor.  She apologized and asked for my forgiveness.  She believes she harmed me, not in her care but in having me go through the exam and testing.  I absolutely understand her reasoning that if she does not rule out alternative reasons for the bleeding at least every two years, she cannot know for certain that nothing has changed for me.  She does the biopsy.  I get the hormones.

For one, the pain this time was exponentially worse.  I can tell myself nine ways to Sunday that it is surly my nerves, but this time I found myself instinctively trying to get away from the surgeon.  I very nearly fell off the table.  Because I do not like to have others witness my weakness, there was no nurse in the room, so the doctor had to stop what she was doing and grab me.  All in all, it was a particularly bad moment for us both.

Afterwards, I also instinctively tried to ... hide.  I was not all that lucid and, as my doctor later told me, was whiter than the sheet across my legs.  Working very, very, very hard not to come near me, she whipped over a drawer and started pulling out gowns and sheets.  She used them to essentially swaddle me, until I was eventually wrapped up in fabric.  Shaking, weeping, hurting, and trying very, very, very hard to not be in that moment.

The rub is that since the testing was done, I will need to live with the results.  Last time, I had to repeat the process.  I am hoping that the results are clear this time.  Visibly upset for me and over the situation, my doctor said that she is open to letting this be the last time.  To just try and treat me via assumption.

I see her, both a surgeon and OB/GYN, because we have had this on-going conversation on repairing the damage from my past abuse that makes things difficult for me.  It is a catch-22.  There is no guaranteed the surgery will work and there is the very real possibility that my nerves might be disturbed beyond anything pain medicine can address.  Plus, I do very poorly with anesthesia.  Sometimes, at home, I have such trouble that I am ready to pick up the phone and beg her to operate. Thinking about what happened in the room on the 23rd, I cannot see how having surgery would even be possible.

My counselor then and at our next season, talked with me about PTSD and how the trauma of that day is colored and formed by my PTSD.  We talked, again, about how I have failed to respect my PTSD and to care for me.  I am oft hyper-vigilant because of the PTSD (and can come across as not paying attention to whom I am with because of where my attention truly lies), but I have not been vigilant in my care.  Yes, that is in part because family and friends have also not really respected the wound of PTSD or encouraged/supported me in being vigilant in my care.  But it is also because I want not to have PTSD.  I want not to be the traumatized mass of human misery perched on an exam table but lost to the world.

Too, I have wanted to write about how sexual abuse colors and hinders medical care when it comes to the private parts of bodies.  Only sometimes I think that no matter what I write I will fail to do the topic justice.  My words will fall short.  It does so because of the assumptions medical personnel make when they see the trauma still playing out in your body.  And, these days, anything physical is written off as mental.  SIGH.

But the main reason that I have not written, that I have been so silent here, when I most fervently do not wish to have gaps in my online rememberer, is that I am having terrible problems with palpitations.  To me, frightening problems with palpitations.

For a long while now, I have battled the hammering in my chest and the thundering in my ears.  I have endured the wild swings of heart rate, especially upon the transition from lying in bed for hours and standing.  My heart rate can quadruple.  I oft faint.  For ... maybe 9 months or so ... the fact that I have palpitations whenever I roll over in bed, ginormous thudding in my chest, is the chief obstacle to  getting enough sleep.  It is very difficult to sleep when it feels like a stampede of elephants is occurring in your chest.

Starting this summer, I had new palpitations:  flip-flopping and fluttering.  The first feels like your stomach does when on a swing and you've gone a bit high.  The latter feels as if my heart is made of butterfly wings instead of a muscle.  Or something that is likened to a fluttering motion in your chest.

Thursday night, I had palpitations start up when I was reading.  There I was, peaceful and resting, and WHAM!  It was very disconcerting to me, for it was the most I had had at one particular time.  Friday morning, they started, the flip-flopping and fluttering, and did not end for over an hour.  I was rather scared and very much wanted to go to the ER so that if I was to have a stroke or a heart attack, I might survive.

Only what would happen to Amos???  If I show up with an erratic heartbeat, even if just the malfunction of my autonomic nervous system, I am most certain to be kept over night for observation.  I am fairly certain that is a likely assumption.  And I have no plan ... no place ... for Amos to go for temporary or emergency care.  Oh, my, did I want some doctors around me that morning.

I finally fell back asleep and, when I awoke, I called the cardiologist for an appointment and then called two friends for prayer.  Yes, this confused-by-faith person very much wants prayers.

The scheduler wanted to know why I wanted to see the cardiologist.  When I explained, she shunted me over to a nurse.  The nurse squeezed me into the schedule November 10th.  Even though I have many days to wait to hear what I want to hear (you are not going to have a stroke or heart attack from this), I felt immense relief just having an appointment.  I am 99.99% sure that this, too, is part and parcel to life with dysautnomia in my body.  However, I remain rather worried.

Even as I type this ... I am distracted by what is going on in my chest.  It is annoying and fearful.  And it has been incredibly difficult for me to navigate.  The physicality of dysautonomia, the pain and sensations I have in my body, is the worst aspect of the illness for me.

Not helping in my overall distress this evening is the fact that tomorrow I see the replacement GP who is, currently, restricting my access to two maintenance drugs:  Zofran (nausea) and benzonatate (asthma).  Neither of those are really optional for me, especially the latter. I simply do not understand why she has not read my medical records and why she is changing my treatment protocol when my health has not improved.  I do not look forward to trying to advocate for the renewal of both prescriptions.  If I could do so without consequence to my care, I would ask her to explain to me what dysautnomia is and why B2 agonists (asthma drugs) are no longer safe to take.  I do not believe she knows or ... or cares.  SIGH.

I also do not have enough Celebrex to last until my first appointment at the end of January 2016 with the new GP who has dysautonomia patients.  I have to work with this doctor until then.  That or huddle in pain for over two months.  Without Celebrex, my arthritis is so bad that I am do anything.   I can get my other prescriptions from my other doctors, but as a GP, I need those three from her.  If she also ceases the Celebrex, I can go half dose to get through to the new doctor.  But I must have the benzonatate.

My asthma has just not been under control at the reduced dose of theophylline, so I am back at 800mg.  So far, I seem to be tolerating it well.  The reason I wanted to try it again, besides waking up coughing so much, was that my hair is falling out again.  For me, that is a sure sign my thyroid meds are getting off again.  I hoped that, having seemingly become used to the increase in thyroid meds, the conflict with the theophylline would no longer be an issue.  It's been something like 10 days, and I have had nary a theophylline toxicity issue.  Thanks be to God!

If the flip-flopping and fluttering is not going to go away, I need help adjusting to living with feeling so ... wrong.  I have become used to always feeling my heart. In fact, in the rare times when I cannot, I wonder if I am still alive!  But this ... this is felling me.

I need help.
In more ways than one.