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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.
Sigh.
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. 

Wednesday, August 7, 2013

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. 

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.