Surgery- Gall bladder

I need my gall bladder removed.  Since the stroke I have dozens of little stones that have formed in it, and cannot be on any statins because they give me an attack.  (Doctor point of contention "There are no studies that show statins cause gall stones").  Well, doctors. When you put me on statins they give me an attack. When I don't take statins, the attacks stop unless I do something like, say, for instance, eat a brownie. A big one. Or down something cooked with lots of dairy.
Since I am "getting" the importance of being on a statin as a preventative, it is better for me to do this surgery when I am still relatively young with minimal health issues at this point.  (Do I really get to say that with a stroke and deadish head tumor floating around in my head -- I am saying it anyway). The stones may have been caused by my sudden diet change or weight loss (35 pounds over a year, no more any fried foods or burgers...75% less meat consumption) and in some ways it does not matter. A gall bladder attack is something I am getting very tired of.  Hours on the bathroom floor worshipping the white ceramic toilet.  Absolutely hands-down an unthrilling stomach venture.  And they always happen at night, so it pretty much wipes out the next day.
Unrelated milestone I passed... the two year mark since the stroke.  It is true, the first year was the sketchiest.  I went to the hospital for more weird episodic head stuff than I have in the last 9 months.  It seems like things have stabilized. For my age and demographic, three years is the mark of going back down to only having a 3%  risk of recurrent stroke (10 times greater than the non-stroked general population), rather than 30%.  I should search Deans blog for more current research than 20+ year old stuff out of England but I liked what this one said.  I am a person that likes to know things, but truly the data on strokes is heavy, depressing, and hopeless sounding.  I went to a very dark place post-stroke because of how it was presented (and having many in the health care industry visibly give up on preventative health care for me) like I had one foot in the grave. Technically, we all are going to the same place, so that is a ridiculous attitude to have.  I am glad (?) maybe not the right word, to know what my body has a propensity for so I can manage my life better.  And, I get to say that, because, really, what choice do I have?  -

My Mom's Day present from the kids this year. 

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.

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.

Pharmacopia

I was prescribed standard "post-ischemic stroke of unknown origin" drugs.  So: statin-blood pressure-blood thinners to add up to a anti-stroke cocktail that "studies have shown" will deter that other stroke.  Will lessen the chances.  Even though my chances are elevated because I already had one.
Thing is. Those drugs suck.  I took them for one year, 3 months.  Daily.  Religiously.  Because. I. Did. Not. Want. Another. Stroke.  And that is the only way I was told was proven. Yeah. Exercise.  Yeah. Weight loss.  Yeah, diet.  Did those inadvertently because I was so freaked out. 

I did not want my kids to experience another stroke.  They are still dealing with the ramifications of July 2011, it drastically changed how we all see life.  It put fear in their life when honestly, I wish they did not have it.  (But we don't control lives now, do we?)

Those drugs.  Made me dizzy. Gave me dozens of gallstones.  Thing is: when you have a dead zone in your head how do you know you are recovering from a head injury vs. side effects from a prescription?  I did not know. I blamed it all on stroke recovery.  I am off Plavix and the statin.  I have no dizziness. I have no jerky muscle movements.  I have no firework sparks going off in my skull randomly.  I was blaming all that on the stroke and the bullshit thing is it was the drugs.  Which every doctor denied "that is not a usual response to this drug" but the pharmacist confirmed as a possibility.  There is a strange loop we get into.  The insurance. The doctors. The "norm".  Pre-stroke I did not drink.  I barely took aspirin because I really don't like drugs.  When I was put on an overabundance of pharmaceuticals it makes sense my body had difficulty navigating both head repair and drugs. 

My liberty is I can say this all because my cholesterol is low. My blood is thin. Honestly, if I was in a risk zone, I would still be on them.  And yes, I am going against doctors wishes my dropping these drugs, but whether that is for litigious self protection on their part or a true belief that drugs help... I need to listen to another voice.  And that voice is not based on studies that are not my demographic, not my physiology. Sucks, but there it is. 

Physical Therapy - again

Went to a new physical therapist yesterday.  As part of my wrapping up medical things while they are fully paid for before the divorce... I went to this PT for getting my lesser muscles back online.  I notice my muscle mass is decidedly different on the left side of my body. After the ever-fun assessment it was decided, yes, my left leg and torso have lost strength.  He gives me such simple exercises.  Ridiculously easy and slow and they don't take much time.  And, after, I feel like I have run a marathon and swam the English channel AND climbed Mt. Rainier.  My body has been slacking big time.  (Really, I wonder why.)  Once I get over the shock that I have no strength (what is getting me up in the morning? because it is obviously not muscles) I do my exercises and freak out my body.  Connections. All about those connections.  Thank god I am such a stubborn person. 

Doctors and trust

My family doctor was named Leslie. And that is what we called her.  She was also my kids doctor, and gave Ruby her personal email when she became a teenager in case she had any questions about anything at all. Six months after my stroke, Leslie moved on to a training and research position with Fred Hutchinson for the consistent hours and more pay.  But not before she normalized my new life for me just a bit.
She was an amazing practitioner.  She would give me alternatives to prescriptions. She had no time limit on speaking with me about everything, she would take as long as needed.  Once we were done after two hours... an hour after the office closed.   She gave me options to the intense drugs my neurologist was prescribing post-stroke.  This caused him to call her up and read her the riot act, which she then called me and told me both sides of the medical coin regarding the drugs. She was not phased by his call, but wanted me to know I had options.
Even though it was the first time she would not say "everything would be alright", she did tell me there were patients she had with strokes that fully recovered. And got off all the drugs.  She rolled with the punches, no pity, no I am so sorry.  Just : this has happened.  These are some options.  This is what you can't know.  This is what you can.  I miss her knowledge of me.  She knew I did not like drugs.  She knew I was stubborn and liked to figure stuff out.  She knew I needed to know things.  And that I am strong and a fighter.  I guess I am writing this after trying for the last year to find her replacement.  People do not practice medicine that way... or at least I have not found it.  I am slowly molding a set of docs and nurses into what I need but they are under a big hospital corporation that keeps track of every moment of time and makes sure it fits the prescribed pattern of medical behavior for maximum profit.  When I was in Kauai I had some tests done and moved off another drug. (Plavix, I am not looking forward to my neurologists response!)  I was in contact with a nurse at this new office getting the hospital info for her so she could fax off an order...and by the end of our conversations I learned all about her experiences of the other Hawaiian Islands and the Caribbean. Thisconnection makes their tight rules a bit more palatable, in that I am hearing personal stories- and that makes them see me as something other than the patient with a whole lotta shit going on in her head.   I have expanded my world so much post-stroke -opened myself up to new friends, new situations, a new perspective. That actually sounds really cheesy, but it is true.  I am really happy to be here, for however long that is and living a life that I am present in.  No more powering through life with it blurring by like a scenery out the window in a fast car.  Wish me luck with my doctor hunt?

Body awareness

When I was doing various rehabs it was mentioned that "yoga would help".  I do it now, but in the beginning it was a challenge due to balance.  I thought it wildly interesting that I could lose perception of a whole side of my body.  I tilted to one side, I was all bruised from banging into things on the left. But I was not aware of my tilting, and every time I hit something I was shocked.  I lost all ability to be conscious that I even had a left side.  My favorite* strange thing was my left hand letting go of stuff if I didn't watch it.  Just flat out dropping plates and cups filled with drinks.  It was almost as if it was no longer a part of my body, but an acquaintance that I had to keep an eye on so she wouldn't destroy my dishes and harm herself.   I also recall when I began driving that I had to be purposeful in using the mirror on the left side.  It was no longer automatic to check that mirror when merging -- I had to think about it with focus. I know those of you who have this understand, but I find it very hard to put words to losing a part of yourself.  There is no awareness that my left side existed.  No wisp of memory, no "I used to be able to do that".  When I sleep my head wants to tilt to the right.  It feels natural to lean that way.  Super comfortable, and comforting.  Since the stroke I have forced it to tilt left. Pretty much anything that feels void and awkward if I can make my body do it, I do.  And tilting left when I sleep is not a good feeling.  It is not that is hurts, or is uncomfortable, it just feels unsettled.  Like there is no recognition of my body existing in this position.  Not relaxing.  But I have done it over and over again.  Consciously turning my head to the left, moving the left side of my body, my leg, my torso. I can now fall asleep with my head to the left, but the muscles cramp up.  It is all a big process. What do they say?  More a marathon than a sprint.   I get that feeling of wanting to not care. To give up. To take the easy road and exist in my right sided realm.  Most of the time, I fight that.  When we do closed-eye practice in yoga sometimes I open my eyes and find my body has twisted to the right.  All I can say is that it is good I am stubborn and like to win - so when my body torques to the right and feels lovely... I pull it back in line or to the left where it does not reside in peace and make it stay there. 

Son Wilder's art project for school.

18 months later, looking in my car's left sided mirrors is back to being automatic. I pick up my left foot when walking so stumble less. I carry things without dropping them.   But I have way more bruises on the left side of my body that I don't know where they came from, and have joint problems in my left knee and ankle due to my loss of communication between my torso and brain.

This topic idea came from Grace  over at http://www.myhappystroke.com wrote recently about proprioception and her navigating therapies.  It got me thinking about all of this...