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Monday, February 8, 2016

Day in the life

My life is a continuum. Ups, downs, absolutely sideways.  It seems to always be trying to reach balance.  Sometimes I am aware of the ways it does that, a lot of times not.  
I had a couple dramatic medical adventures. 
I have two kids, got a divorce. 
I have one great kid still at home.  He is 16, and rife with the joys and decimating blows that they can feel. He is also taller than me. It so hard when your baby boy grows taller than you!  Sigh. 
My 20 year old is making her way into an adventurous, successful adulthood. She chose the bumpy, bruising path to get there, which is not the way a parent wants their child to travel on, but it has certainly made her a wise 20 year old. 
I got remarried. 
Throw on top of that shock, recovery, getting a job, teenagers, new love. My life has not really quieted down. I am still working on that - The quieting down part.

A major thing for me is that 4.5 years out from the stroke I am still gaining skills, retraining my brain. My job has a lot to do with that.  It daily pushes me to make quick decisions in many arenas: financial, juggling, managing, clear interpersonal communication. 

I was thinking this morning (and getting cranky) about a couple who saw me after the stroke. They treated me like I was now operating with minuscule intellectual capabilities.  This was a new thing for me. There is a huge psychological hurdle we must jump through - we have had a challenge thrown down in front of us by having a stroke in the first place, but there is a form of discrimination that kicks in from former colleagues, nurses and friends. (My docs do not fall into this area, they are fully versed in the randomness of brain capabilities - with or without a stroke - and have not shown this propensity.) I am a confident, kind and stubborn person, but now my stubbornness is not viewed as my temperament, if it is difficult for people, it is viewed as brain damage.  When I am having a brain fart and cannot recall something, the blame gets assigned to the stroke. NOT what it most likely is --- that I am a menopausal woman with changing hormones and body. 
If they are aware of my medical history -- they attribute every negative interaction with me as stroke related. 
If they don't know my stroke history? They have no problems other than they get to deal with a stubborn, confident and kind person - and we all roll with that sort of stuff everyday in the real world.  
This is why I don't tell people my medical history. When I do, I get watched over and mothered. Am I working too hard, too long, quality of life discussions, etc etc. including the insidious "I am now a weaker being" than my previous self. I am aware of my health risks. That I carry a risk in my body that others do not have, an increase in a second stroke.  Or for clarification, I carry a known increase of risk,  as opposed to the general populace which may have a greater risk but they are not yet a statistic. I may live to a ripe old age and get taken out by cancer. Or dementia. Or twist my ankle wearing some gorgeous but unstable fancy shoes, get blood poisoning from a cut and keel over.  There are so many things in this world that are a risk, and that tightly controlling a known risk - stroke - won't really keep me safe.  So drugging me up the yin yang with side effects and all because "there is a decrease in risk" for white, 70 year old men to have multiple strokes does not really speak to me as a white female 50 year old of Peruvian-German origins. I understand my docs want to really err on the side of caution. I understand I am lucky, in so many ways.  I get that work is stressful for me, and I would decrease my risk if I did not do it. But I do love working. It is all a dance. And we all have the same outcome the end. 

Me and daughter



Saturday, December 20, 2014

Statins - again.

I returned to taking a daily dose of statins.  It started slow- my internist wanted me on them, even if it was once a week. My neurologist wanted me on them. Both extolled its virtues endlessly.    I slowly, over the course of 6 months, went on a daily dose again.  
Thing is, I almost checked myself into the ER last week because I was losing it verbally.  I could not recall simple words. People's names.  Every once in a while I could not finish a sentence without slurring. My boss started noticing. Spell simple words like "quiet". Then I remembered. (Which is a big deal!)
It is the damn statin. Went off of it a week ago and it all came back. That is a scary drug for me if I need to work and be a modicum of clever. It takes my verbal abilities far, far, away.  Luckily they were still there in my brain. A double-edged sword...supposed to be on it for stroke risk prevention, but I can't if I am to perform in a work setting.  I know this does not effect people the same way, and I wish I had mellower side effects. It is a dance we do.  Survival chances, health risks, life choices...prescription drugs. 

Wednesday, December 10, 2014

Waiting, or not.

Do you feel like you are getting "better"? Are the people around you patient? Are you patient? Do you remember when you travelled down the road unaware of what a stroke can really do?  Do you remember when strokes are what you have when you are quite mature in age, perhaps living in assisted living? Do you have a very different fear added to your emotional repertoire that you feel has been forced upon you? Do you have a view of what makes a life, and how you wish to enter death?

Some days I have a pot of roiling questions twisting through my brain.  I think they are actually always there in the background, I just don't recognize how they may change my approach to things.
I have mentioned before, I will say it again, my trust relationship with my body is sorely compromised. I spend a lot of time weighing, rationalizing, arguing, accepting, promising and planning.  I know nothing is certain, nothing is guaranteed. Except that I am here.  There can be no waiting for me in this life anymore.  Technically this is true for everyone, I feel like we have just had a bit louder reminder of our finiteness.    I know that, but I also forget.
How about you?

Wednesday, April 30, 2014

Working again.

So I got a job.
I was not necessarily looking for one, saw this position pass by on craigslist, and sent in a resume.  I am loving it, I forgot how much I love working.  I completely have a different perspective on working, it is not the be all- end all work my life away career... it is the wow, I am really happy to be doing this!
My son is growing up, my daughter is slowly making her way through life.  I have tumbled headfirst into a crazy wonderful relationship.  The fog has lifted on my thinking, and almost three years later, I can still tell I am improving everyday.  Don't buy the BS that your healing has to happen all up front. I am still building brain processes.  Sometimes I do too much. And the exhaustion is mind-numbing. But I can handle it.  I am loving breathing.

We are toying with the idea of living in Europe for a year. Maybe my daughter, most likely my partner, too.  Sometimes, when I think that "I can't", because that is irresponsible. That is not feasible.
Then I think that in so many ways I am so lucky, and I have been warned loudly by my body twice I am not going to be here forever. And so then what comes to mind is : why on earth not?
Oh. There is one thing I forgot. MONEY. But that is why it is a dream. A possibility.  Somehow.

Saturday, February 15, 2014

Annual Check on Brain

I had my annual review of "what is going on in my head".  This entails getting a MRI, and then comparing it to the previous year.  Boy, you get to a certain age the annual visits for mammograms, gynecology forays, dentists and throw in neurologist for the heck of it visits take up time, and money.
My meningioma was treated by gamma knife December of 2011.  I don't recommend this treatment NOW, now that I know the end result, but I was not fully operating at full awareness and felt the pressure to do something. Something to retard the tumor growth going on in my head. And, for the record, the tumor and stroke are unrelated.  I was aiming for balance, since both are on opposite sides of my head.  Just kidding on this, but really, when you get hit with a tumor and stroke, can you do much more than laugh or cry or yell? I did the other stuff, and ended up with the laughter. Reminds me not to take myself to seriously.

Gamma knife is an intense laser pinpointed at the tumor from many different angles.  The downside, which happened in my head, is that it can destroy good tissue along with the tumor.  Not fully explained to me at the time, but there it is.  My somewhat egotistical, loves the sound of his voice neurosurgeon did not really want to address what my great stroke neurologist pointed out in a visit to his office... that my brain stem got zapped.  My scans were taken to a neurology review board (because I am medically interesting) (I would prefer to be medically boring but that option is no more) another doc noticed "a shadow" on my brain stem next to the tumor... that might be due to it being hit by the laser.  I was upset and pissed for about two days, then let go.
Next, my regular doc ran blood work, the results which he said "woke him up in the night"... since they made no sense.  (Welcome to my world.)  What he is thinking, is this is tumor related.  A part of my brain got zapped and is dropping my blood serum sugar to danger levels. I feel fine at this point, so no worries yet.

My partner asked me how I was doing about this news and I lied to him and told him that compared to a stroke, having my pituitary go haywire is nothing. That was an untruth. There is a part of me angry, frustrated and my favorite... afraid (that is heavy sarcasm). I am thinking I have quite enough of this shit.  BUT that does not really matter, because it is a life, it is my life, and it is on my plate. There are no other roads I get to travel down, the only control I have is how I look at it, my attitude.
Time and time again this medical stuff has reminded me, brutally, bluntly, painfully, how not in control of things I am. Yes, technically there was another procedure that did not have this side effect.  But that was not the knowledge I had available to me, not the decision I made.  So, I live with this right now.  A brain stem is crucial to life, the breathing, heart beating side of it all.  But I get to choose what kind of life to lead.  It doesn't always feel like a choice, but it is.   And so, so cheesy but true: I am so happy to be living this life. I feel a deep joy... and thankfulness.

Thursday, October 31, 2013

Healthcare - insurance costs

I am do for a divorce soon.  We were working on filing the papers when I hit a rough medical patch (stroke! tumor! an overabundance of intoxicatingly fun life happenings! I am being so sarcastic here...)  He did not finalize the divorce and leave me in the lurch, instead, he kept me on his insurance and waited.  As did I. 
We are gearing up the paperwork again, and I am taking care of medical stuff I was procrastinating on. 
My story is this.  I received the bill for the gall bladder surgery.  $38,561.00.  
                            My portion to pay.    $518.00
                             The amount they write off due to me having insurance?  $30,765.00. 

Let me get this right. 
If I did not have insurance, I would be on the hook for the whole amount.  Chances are I would not have insurance because I could not afford $600/mo (which is the cost of my specific insurance).  So I cannot afford insurance, but I receive bills that would eventually bankrupt me?  With my health issues, I won't ever go without insurance, but it seems ridiculous there is such a price difference.  It should be the same damn price for everyone. 
Oh, and, I have started asking how much visits and tests are... and frequently receive the answer ; Oh, don't worry, your insurance will pay it. 
I know they will pay, but since you charge a different price for me, and give me and my family more advanced and expensive tests because we have good insurance I would like to know what that is. 
And for the record, I am fully supportive of the affordable care act. 

Tuesday, October 8, 2013

Gall bladder firmly out

I had the surgery. My over sized non-working gall bladder was hauled out of my body.  The surgery was laparoscopic-- four incisions made, to accommodate a camera, navigating tools and extraction spot.  I recovered nicely, although at one point got a lecture because I thought I could be doing stuff one week after surgery.  And was told, no, I needed to not be hauling stuff around for about a month.
I learned to be patient.
There is also the most astounding photo taken by the doc.  I love it! But it is a bit graphic.  My surgeon, who has a sense of humor and knows I do, when all was said and done and my surgery was over, took a pic where he arranged my gall bladder and gall stones into a smiley face.
Family members say I should put a hat on it and make it my xmas card.  I am surrounded by comedians..
Unrelated picture... what else am I doing?  Processing the 1600 pounds of apples this tree gave us.  Full disclosure : I am giving many of them away.