Tuesday, November 29, 2016


On day 36 of no hormones, I started my period and learned exactly why it was that cycles came up so often on dysautonomia forums.  Dysautonomia exacerbates things and its accompanying neuropathy magnifies pain.  For a while there, I honestly doubted I would get through the moments before me.  Having another migraine did not help.

All thoughts of saving money by being off the hormones went flying.  I became rather desperate to start them again and wonder what brand I can find after the last two I was one were discontinued.  fortunately, I still have six weeks worth, so I started them on Friday after trying to reach the specialist who manages them for me.

I just don't see how I can face such pain again.

The refrigerator was delivered yesterday.  Coming early was a pleasant surprise and it has many upgrades over the earlier model that I very much prefer.  The lighting is fantastic and the ice cubes are not those skinny rectangles that melt faster than you can finish a drink.  No, instead they are actual cubes!  Well, trapezoids really.  It also rolls around quite easily.  I couldn't move the old refrigerator unless it was empty.

However it's making a fan spinning sort of noise.

I see the specialist on the morrow, so I am not sure what she'll say.  One of her nurses sent a note today asking me to hold off starting the hormones back, but I had already done so, of course.  Being a wimp about the pain.  Being terrified of it coming again.  I know my GP doesn't want me on them, though she has not explained why.  I know that my age is changing the equation.  But the pain....

A while ago, I watched this video on Chronic Pain Management in Dysautonomia by Dr. Paola Sandroni, who is the head of the autonomic clinic at Mayo Clinic. Something that she quipped has stuck with me, "Don't cut!"

For years, I have been going back and forth over having the specialist repair internal damage from sexual abuse.  That comment—almost an aside—has stuck with me ... like glue!  I started thinking about how much difficulty I have had from the pacemaker incision.  A year later and it still hurts.  A year later and it still itches like nobody's business. I often wish for it to be cut out just to stop the itching.

Whilst I was writhing in pelvic pain, abdominal pain, and migraine pain, I was desperate and thought that maybe I should at least have a hysterectomy to keep this from happening again and to be off the hormones.  But when the pain began to ease, I and realized why Dr. Sandroni was saying that cutting is not the answer to pain.  I started thinking about just how many nerves would be cut in reconstructive surgery or even a hysterectomy and I became overwhelmed with just how much dysautonomia affected every blasted facet of my life.  SIGH.

A part of me is curious about the appointment on the morrow and the rest of me is just terrified.  It wasn't just the unbelievable cramps.  It was feeling as if I was being stabbed internally for days on end.  I just cannot go through that again.  I am barely through it right now.

In a way, the early delivery of the new refrigerator with all the work of moving all my food out of the old one and then all of that back into the new one, as well as carting up the food I had put in the basement when things started freezing in my refrigerator and carting out all the packaging to the trash ... well ... the exhaustion was a good distraction.

Just think.  In twelve hours, I'll know what the plan is for me.  For the pain.


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