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Tuesday, June 25, 2013

New Internist

My neurologist has been working on me a while to get an internist.  I have so far tried out two - neither which clicked with me. 
Trust. The first, when I told her my blood pressure ran high during menses she cocked her head sideways and said "Well, that can't be, why don't you come in and have the nurse take your blood pressure at that time and we will see".  Like a) her nurse will get a more accurate read than my home cuff or the drug store and b)it is all in my head and she needed an official nurse reading. Also, her office was a ferry ride and 30 minute drive away.
Trust. The second charged me $310 a visit because I needed the "highest level care". She was never with me more than 10 minutes, frequently did not remember things she was going to do, and never crossed from her side of the room over to mine.  Not sure that is $310 a visit care.
Yesterday I went to a new doc.  Energetic, alert, super up-to-date knowledge, he spent the time, asked a lot of questions, and may be a good fit.  Every record he makes will be online accessible for me to see and be a reminder of all the things he and I want to do.  So if I forget that he said to monitor my blood pressure at 9am and 9pm I can check that.
The only thing I had a problem with is that he questioned whether some of my stroke symptoms were really psychological -- if the symptoms I experienced post-stroke were my mental gymnastics in trying to cope with a stroke.  He was asking if the brain shut-down, slurred speech, uneven tilting walk, brain sparks, dizziness, unawareness of my left side, tripping, dropping, memory holes were from the stress of dealing with a stroke?  The mind-numbing fog that descended was mental?  I know he will change this thought process once he sees where my stroke damage is. The distinct MRI image pretty much shuts doctors up, and they realize this is not all peri-menopausal female issues. (Yes, I have frustration issues with the wide swath being female has cast over my health care).
The first thing he asked after we went through medical cursory questions was : So tell me about your stroke.  I did a big pause, and then laughed. I am not sure he understood. That is a loaded question. This thing that I have been working into the concept of my life, and my concept of death is so much more than a two minute disembodied trail of symptoms, and each time I tell the tale there is a different angle.  I don't think I can tell you about my stroke is one fell swoop. Do you mean the series of physical events leading up to it? Do you mean what happened physically and mentally afterwards?  Do you mean how they treated it? What tests I had? What they ruled out?  What they don't know? What I do?  How my life is now rolling down an entirely different track... some of it chosen, a lot of it chosen for me?  I know, I know he meant the western medicine list of physical details.  But that isn't anywhere near the whole story, is it? 

Locking mechanism on my bathroom door that I pulled apart to fix.  This is an easy fix. Other things, not so much.

Tuesday, June 18, 2013

Some fears still hanging around-but getting on with the daily chore of living

On Wednesday I will accept a position on the board of a museum.  One year ago this would have been a pie-in-the-sky concept, since I was immersed in "what-if's" and healing.  What if I rev myself up into another stroke.  What if I have another stroke.  What if I cannot grasp detailed concepts. What if I forget stuff.  What if I fall asleep. I don't have as many of those anymore, or if I do I see other people my age without strokes in their past and realize, "Holy Crap, their memory is shot and they fall asleep too!" .
My part-time job of last summer helped me back into the pacing of work.  I took the winter off to focus on family and farm (which was good because two teenagers just about aged me 22 years in seven months). 
I am gearing up for going back to work and getting a divorce. All which I was doing pre-stroke - but rapidly ceased at my forced life hiatus.
 I have learned when to take a step back.  An adrenaline junkie, I love revving up under pressure to accomplish things.  I know when my physiology is amping up and I intentionally divert that energy to a different place.  That feeling of being keyed up now is a warning sign to me.  That is where the fear comes in... that if I live my life the way I did, that automatically I will wander down the same path and have another stroke.  There is no logic to the situation when I am thinking like this, just an irrational fear.  Almost like a baseball player and their superstitious repetitive movements to bring them luck - I cannot overcome these fears except with time.
Example: During my three-day stroke, I was in a big box store and the neon lights in the back of the store made me feel unbalanced, nauseous and tippy.  So, if I feel like that in a store,(which I still do sometimes) I try to overcome the fear that starts welling up and wait it out.  I remember: I do not have the same circumstances of health that I did with the stroke. Just because I am feeling light-headed does not mean a stroke is imminent. I do have some perception differences post-stroke and tumor, and this may be one of them.   I have found the passing of time is the only thing that truly heals this fear. no doctor has been able to explain this.
The job was the same thing.  When I would get very tired and have more pronounced head fog and slurred speech, I would worry.  As my stamina increased, that diminished.  So as I worked, my fear quieted. The goal here is to make it quieter, less urgent,  and then send it away.  
It is all a learning process, which is ideal for me.  It is good to learn that life is finite, and appreciate it for what it does bring, not fight against what it does not. This may all common sense to you, but I used to have the illusion I controlled my life a bit more than I do.