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.

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.

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.

The reports of my demise have been greatly exaggerated

When people hear stroke, they hear brain damage, and they hear mentally deficit, or physically infirm. And shorter life, and ill health.  I am getting tired of the assumptions made about my "condition. "  The first six months I was telling complete strangers I had a stroke. It was like I needed them to be as astounded as I was. I realize that there is a huge mental block that most people have comprehending that. And I see a lot of fear in them, as I have fear. I feel like a recovering alcoholic "one day at a time" because that is the only way I have found to embrace that fear. Very slowly. Every day I am alive and in my body is a step toward acceptance. I have learned not to tell people about the stroke because they have no where to go with that information. I still have to figure out where to go with that information. Here is a couple tales of what happens when I do tell.

Firstly, I met a former board member for lunch and told her that I had a stroke after her personal tale of a major car accident. When I met a different board member that I had a working rapport with a week later- he gave me a hug just a tad too long - and quizzed me mercilessly about "what changes have occurred in my outlook on life" "what was my love life like" "how were the kids handling my illness" and all sorts of strange uncomfortable queries.  These were board members that I got along well with at work, but they did not know my private life story.  When working, I don't tell people personal stuff because it is work : my livelihood, my professional career. 
He then went on to say they were talking, and understood what changes were happening with me because a mom - in her 80's- had a stroke on the same side of the brain.  And that they understood my ability to think was affected., because her ability to think was affected. I then got a call from him a couple days later to tell me of a volunteer who spoke glowingly of me... And how I needed to realize what a difference I had made to so many people. Does that sound like eulogy material to you?
Second, I have a dear friend that handled my stroke like this:  she mentioned that she would like all of us to go on a trip together "because she doesn't know how long I will be able to do such things. "


I am still here and talking at my kids about their homework (I purposely say at because they don't necessarily listen), taking the horses for a walk, getting the garden queued up, negotiating with doctors, working on my house (always the house... )  Yes, I basically had a big "STOP" put on my life while everything shifted into understanding a new concept of what my life is -- that it is finite and so fragile. I would not be called a fragile person normally, but now get to add that to my repertoire. I am nothing if not adaptable, even if taken there against my will.

A life of stroke, tumor, and one inch gallstones!

The stroke happened in 2011.  I carried no risk factors such as high cholesterol, family risk, smoking.  I did have the start of belly fat... skinny arms and legs and and little pooch hanging over my jeans. I figured all the horse manure I was hauling and house repair I was doing was keeping me in shape.  The only thing I could change was my diet... I had a love of baked goods, burgers and lots of coffee!  I did have fluxes in my blood pressure, corresponding with attempts to control menopausal symptoms with hormones.  BIG fluxes.  So much so that a man standing behind me at a pharmacy blood pressure machine commented : "Whoa, is that normal for you?"  So I had to hormones nixed.  Six months later, a stroke.  (I am not saying this is the cause...)
There was alot of internal mental gymnastics around coping with the stroke, when my brain felt sparky enough to focus on life. The start of an awareness that I will not be here forever. A 'duh' but it was presented like a slap in the face.  Then, at a routine follow-up MRI they found a meningioma tumor in my head (not brain).  In some ways looking at it now a year later, having the traumatic, what-the-f stroke first has made all the other issues small.  Not too small, but they are not the loss-of-everything-you-know that a stroke demands you be aware of very suddenly.  With the stroke there was no procrastinating.  No pushing my body forward with sugar and coffee.  It just was, and made me very present in my body. Which really sucked when my body was a cesspool of rumor and fear and terror and loss.    It sucks there is no guidebook or professional that can succinctly say "you had this kind of stroke, so you will have changes in these functions." It is all wait and see.
That is the hardest for me, not having someone that can answer what is gone, what is altered, what is exactly the same and I am blaming it on the stroke?  Because honestly, if you met me today on the farm, you would not know I am a stroke survivor.  I drive, I work, I quabble with my kids about homework and choices.  My co-workers do not even know, perhaps they think I am naturally a bit forgetful.  But there are changes, I know.  Scrambling words. Getting tired ridiculously early. Loss of stamina.  Errors in writing.  I can't multi-task anymore.  (Boy, did I multi-task).  All the little things-  Issues with balance. Uneven muscle tone. Constant ear ringing and head popping.
When I meet some old colleagues and they have heard the news... I absolutely dislike the condescending and sweet elevated tones they use. Like I am an invalid, or child.  It is a stroke.  It is my stroke.  For whatever reason I had it, now it is a part of me.  I may be different, I may not. I hate pity. 
 I did some meditation with the tumor, and what came back was an image of the tumor not as a foreign invader in my brain, but just as an organic lump made from my being and residing in my head.  There was something comforting to me, since I was seeing it as "other" which it was not.  Same with the stroke. 
The key thing here is all these things that seem to be hitting me all at once are just a part of my life. And there is actually a space of a few months between all this crap.  When you see it written out really sounds bad, but I am still here functioning well and busy. I don't write about the everyday with activity from sun-up to sundown -- walking, making jams, laughing at work, movies, my kids.    People have alot crappier issues than what I am dealing with.... I have a home that keeps me out of trouble, chickens, kids that keep me on my toes, crazy cats, a loud dog, gardens, a job, cars that work reliably.  I have access to a neurologist that I love, one that I don't but I have confidence in his knowledge, therapists, PT's... yoga and massage!
I am okay.  I am living my life.  I am independent.  I will not always be able to say those three sentences, but I can say them now.  And that is just the same as every other living thing on this planet.  I hate I had a stroke. And that I have a tumor in my head. But neither is killing me right at the moment, and neither was something I could stop.  So if I say the stroke is a good thing, that is because I have to see the positive. It is how I go on -- half amused at all this medical weirdness. My doc told me I needed to stop being medically interesting.  I agree.  Laughing feels so much better than crying.  I already did the crying, it did no good.  So I will stick with the mirth.

Not Accepting Everything

So I am almost to the point of looking for a position that more fits my training.  My concern is I could be a bit delusional that I can still produce the same quality of work as pre-stroke. I just don't know.  I know when I started my garden job that absolute crazy feeling in my head when my boss gave me run on instructions as in : Do This, Do That, Move This, Look for This, etc etc.  I could feel my brain actually scrambling and freezing and locking... it did not know (or that part of my brain is "gone") where to put a series of quick instructions-- so it would just go blank and not remember any of them.  My short term storage has been impacted, and it feels as though it has been misplaced.   It is very wierd being in my head when it is missing something.  You ever have that?  It's like there is some sort of memory of what was, what I could do, but there is no way to touch it. I have a memory of being very competent and accomplished, but I feel kinda bumbling and floaty sometimes.  I also cannot trust my "gut" as much, as I have discovered errors in my instincts--and I am a very "gut instinct" person!    With work over 3 months my memory has changed & improved so that I actually can remember a string of instructions (at least the first 3 or 4).   Last week I made a appointment with an occupational/speech therapist to work on memory.  I also notice the muscles on the left side of my body have a different consistency than others.  They are always very flaccid-loose-relaxed as if I just had a year long massage and they are jelly.   I am not really complaining, just noticing.  Pre-stroke I always loved learning new things, and new ways to see things.  I thank the lovely heavens that my  appreciation of the diverse ways we can navigate through a life is not diminished.

Accepting fate

I don't know if this is a form of submission (which I am not very good at) but there have been some medical things of late that I realize I am much calmer about.  Hospital visits, TIA's, more tests... it is just one big continuum of my life, and may change how I navigate it.  More crucially, how I envision my future.  There has always been a vision for the rest of my life: farm, animals, watching the kids go off and lead their own lives, working.  The hardest thing right after the stroke was the threat of loss.  First and foremost the kids, but then the lifestyle and freedom.  After a year that frantic fear of loss is calmer.  It is not gone, but holy crap there is not alot about this that is within my control --and it never has been.  So I will mosey along down my life trail, try not to get too grumpy at the kids, try to be generous with myself.  Sometimes I think the stroke is not such a bad thing... since I do not push myself as I once did.  I cannot pile on a monster to-do list that keeps me going from morning 'til after dinner.  I am better at low key, I have limits, I can say no.  I think the stroke gave me the ability to accept limitations.  And also, since I had one, it is not like I have a choice of preference of stroke or no stroke.  For my mental health, I can look at what doors it has opened rather than the ones it has shut-- that is not always an easy thing for me to embrace-- but it is, for me, very important. 
On a funny note.  I took an online medical test on the chances of stroke for my age, health, activity level. (without previously having the stroke)  It was 2%. I was laughing with my daughter that it figures, I always have to do opposite of what everyone else does.  If 98% of the people are not going to have a stroke, then dangit, I was going to be one of the 2%!  OK, not really funny, but I am still trying to make sense of something nonsensical.

Improvements

Pic: Bainbridge ferry in the rain.

When I get frustrated because of dizziness or brain ineptitude.... sometimes I remember directly post-stroke how I tilted when I walked and how I would bonk into doors on my left side (or whatever I was walking near), how I would have to pause to speak waiting for the words to sort out in my brain, how tired I was with muscles spasming in my legs.

I am learning to live with this episode in my life.

To give myself space and time to be this person I am today. I am realizing I was (am) an adrenaline junkie. I operated at work this way... fueling off of deadlines and coffee, sugar and straight shots of espresso. I miss that thrill, that addiction to a warm cup of brown stuff, but am willing to forgo that rush of energy for longterm health. Now I realize that crazy burst of energy I get from coffee puts my body in heart pumping irregularities NOT WORTH IT. That coupled with peri-menopause heart irregularities make me rethink my whole way of operating under stress. I had become very good at using my determination and caffeine to push my body into accomplishing tons of things. Without coffee, I now have to listen to my system say : Enough, we are done for the day -- even when my to-do list is not done.

Stroke support - this is a cranky post.

We are a quiet bunch. I don't see us on the news doing fundraising walks (or rolls!), being interviewed with all sorts of hope for recovery, our friends and family all wearing a certain color in support. I have been thinking alot about this, how from day one of this stroke experience I have experienced less than stellar support, mostly because I have crossed over into the danger zone of health. I don't know if it is because it is a head trauma, and can change the way we interact with the world, or the chances of reoccurence and further disability are increased so we are (possibly) less able to contribute to society, but there is a definite difference there.
I immediately decided cancer would be easier to handle than this... because there is so much friggin' info about cancer treatments, alternatives, expansive support groups, specialized doctors and the anonymous community support for cancer survivors. I am not saying it should not be that way -- just that stroke research needs to have that level of energy and money expended on it. At the very least the medical field needs a whole lot more education beyond "stroke is the beginning of the end." I have heard bonehead things out of doctors mouths (not my neurologist, he has the training, but all my other docs.) We are still loving, vital parts of our communities and families - don't make us invisible.
Oh, and I may still be in the angry part of recovery....

Job

I have started looking for work.  There is an enormous amount of fear (I swear I have used this word more in the last six months than in my whole life) that I will just keel over if I begin working and work the way I always did. Which is hard, long, focused... a bit of perfectionism thrown in. Like my post-stroke body with the head tumor hanging around for kicks will up and quit if I strain it in any way. It is hard to explain what it is like in my head, since I am not toppling over when walking.  Or have very visible signs of the stroke and tumor. But that it feels like I am leaning or will topple. Like my hand still drops things, my awareness of things to the left of me is altered, or that I still stumble and ache on my left side.  Of course, I don't talk of this... my kids freak out, and they don't need the worry. 
 Since I am still argumentative it is assumed all is peachy keen... but I can tell it is not.  So the fear.  I guess I will apply for jobs and see what happens.  This is, after all, a life.   A messy, unpredictable, loving, worrying, laughing, angry, tilting, joyful life.  Did I tell you I am taking a free meditation course on Bainbridge Island?  I will talk of that next time, we will see what sort of calm it can bring, hopefully LOTS.

Best, Andrea

Medicines

Haller Fountain images courtesy "Glabah" at http://www.virtualtourist.com/ http://members.virtualtourist.com/m/p/m/204662/

With the simvistatin I started having aches and a wicked wicked stomach.  Even though my doctor advises there could be "dire consequences" of me being off the statin, I have rolled over to fish oils and flaxseed supplements until my stomach settles.   Today was lovely here in the NW, with sun and spring fever making me want to be outside.  A friend had a dog to massage in Port Townsend, so I tagged along and she dropped me in town while she massaged her hairy client. 
I took a walk up and down a long staircase that connects "uptown" with downtown PT.  As soon as I stopped exerting energy on the stairs I got lightheaded, lopsided and funky feelin'.  It sucks that I don't know if it is residual stroke or tumor effects or medicine side effects.  I have said it before and will say it again : I know these medical challenges will become more commonplace and seamless within my daily life but completing the mental acrobats it takes to calm my thoughts is tiring. The "I am not having another stroke right now" is running alongside the somewhat fatalistic "if it is my time, it is my time and not my decision" alongside "I can't leave my kids yet" alongside "you are a major drama queen get over it."   It will get easier... yes?

Fear

I can be rolling along in my regular life, listening to music, painting the house, brushing the horse, helping the kids with something, and a sneaking feeling comes along that this can all change or be taken away from me in a second.  I know the stroke played havoc with my sense of security, my sense of living.  I still don't trust my body fully to keep me alive at any given point.  This is a natural thing and a natural course to our existence... that at some point we die.  My sense of security in my survival was not a reality, it is the nature of a finite life and lifespan that there is an end.   I am sure this will get easier the further I get away from my stroke, but sometimes it is an unbearable weight to carry.  It is probably why I stay so busy, the tricky thing is that fear usually comes out in some other way. 

Coping Strategies - Stroke

It should be noted I felt I was swimming without arms when I first had the stroke. I was given some geriatric pamphlets about Living With A Stroke. Absolutely not helpful. I called my regular doctor for advice (and honestly in tears and traumatized) and what I remember of that conversation was not necessarily good. I came away with "The beginning of the end" from it. (I should note I am sure she did not specifically say those things, but my ability to hear what she was saying was colored....)
What she did do was get me in to a leading neurologist in Seattle who saw me, switched my medicines that the hospital had given me, corrected the misdiagnosed stroke (the type) and told me I would be almost back to normal in three months.
I got books: Ones with people who survive strokes. And funny books. To keep the levity. Watched alot of hulu.com.
Stress Relief: meditation and therapy. Friends and family.

First post.

Okay first off I think it very telling in my description of this blog that I am"managing" doctors, friends, etc etc. I am not managing any of them... they are off doing their own thing and I am just trying to keep up. My regular pre-stroke doctors are all low key and calm and know me... my new neurologists and surgeons are all revved up and fast talking about things that I don't necessarily follow.
I don't know if this is common but I have been very "in my head" of late. Insulating, isolating myself from the present... in a way ignoring that which I cannot ignore. And no, that is not working for me.
Last night I got out of my little shell and went to a gallery opening at Wilder's school. It was the best ever--just to remind me that AGAIN the world is still rolling along full of normal stuff. It helped that everyone was very outgoing and talkative and I love that. I also have to keep in mind that people deal with this sort of crap (tumors, cancer, illness) daily and hourly and by the minute... so I just need to get over my Why Me complex and deal. I have options, I am not dead. Stark reality works well for me. Sometimes. When I am not putting on rose colored glasses and putting my head in the sand.