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Thursday, November 15, 2012

Not medically significant - stroke causes

I had an ischemic stroke of undiscovered origin. Since that stroke I have been in the ER hospital four times with stroke-ish symptoms (I am very trained by my family and doctors to not ignore those!)  Three of the four times I started menstruation with 4 hours of ending up in the ER.  The fourth time they found my tumor.   Last friday I was in the pharmacy to pick up something.  I sat at the small chair with the automatic blood pressure check to take my bp.  My blood pressure which is drugged with cozaar and never above 110/75... and frequently below 100.... was at 148/96.  I pretty much flipped out. A couple hours later my period started.  4 days later my bp is the relatively normal 117/79 (I have alot of drama from my teenager going on right now.) 
I have brought this up with my neurologist and regular internist, that is there some link between menstruation and stoke, because it seems to be significant in my case.  Since there are "no studies" that can show them this can happen, they do not address it.  They look like they are thinking about it, but then say they don't know.   It makes me crazy that they are so cautious and have me drugged to the hilt (at least to me) because there are studies that prove this particular drug cocktail stops repeat strokes, but cannot move into causes that are not backed up with research.  I imagine it is because insurance won't pay for it.
 I have been told that women are harder to use in some medical studies--with the addition of hormones they have too many variables--so that is why there are more using men. When I worked on research projects, I remember controlling variables is key to a more significant study. That and getting lots and lots of people.   As soon as the 65+ year old caucasian males start having strokes when they menstruate--  the bulk of the study data participants --I should have this figured out.

Sunday, September 30, 2012

Stroke Story Part 2 To the Hospital

At this point none of us are calling this a stroke. We are driving down the road, and 12 year old Wilder starts calling people. Some of these memories are loosely running around in my head and I don't have the tightest grip on them. Like where did he get the wherewithall to call friends and family? Once he dialed my friend Lisa, and she determined he was not kidding she told him to hang up and dial 9-1-1. 9-1-1 had Rose pull the car over to the side of the freeway while the operator kept Wilder talking. I was awake and alert enough to worry when the aid car and firetruck pulled up... the firetruck blocking the right lane of traffic around a bend in the freeway... that it was not parked in the safest spot. We left the car, and the kids and I got in the aid car. I don't know if it was good or bad but my kids being there kept me from being drawn into the quiet of my brain. There was something powerful wanting me to tune out --no anxiety, no fear. But strongly present was what my kids were seeing, and feeling, and their fear. That is why I stayed present, to allay their concern, to show that mom was okay. On to the hospital emergency where they laid me out, asked me my name, birthday, where I was. The stroke symptoms were coming and going, I lost left side function five or six times that morning. Various medical personnel threw out opinions why I was having them from the aid car personnel to nurses, and all suggested stroke like symptoms due to.... ready? Oh yes my favorite : perimenopause. I was taken downstairs for an MRI. I remember it was a sad room in need of paint, and a portly man sat in a windowless room watching. I had to take off my jewelry, and it took FOREVER to get off earrings and a pendant. My hand was not able to negotiate the clasp or earring backs, it was present and working, but would not navigate the job. I only knew this because I could not take them off, my brain was under the impression that my hand was doing just fine. This is one of the strangest cognitive changes... my mind thinks everything is operating as it should when it is not. Also, why the hell didn't I have help? The orderly who rolled me down to MRI was gone.
Into the machine, which was a trip in my current state. I actually thought the different noises were a type of music so it would not be boring for the patient. When I had another MRI a week later I realized the loud blasts of sound were definitely not music. Just shows that the brain has an amazing ability to compensate, cope and justify. The MRI was done, I was wheeled back upstairs and Lisa and her kids had arrived from Seattle. Our sons are the same age so they went off to get food. The kids dad arrived soon after from a different ferry. My mom was notified in Michigan, and she got the nurse on the phone to make sure they knew that I "drank alot of coffee." We got several days of humor out of that one, thanks Ma! A doctor came in the room and had me spell world backwards. This was a favorite game of Rose and mine when she was in elementary school - "backwards spelling bee." Infinity, Mississippi, Precocious, pick any big word and spell it backwards. He said world, and I thought SIMPLE! But I could not do it. I couldn't see the word in my head. I couldn't see the letters. I couldn't group the sounds. I also had sporadic bouts of not talking. And zoning out, not really sleeping, but off in la la land. Every hour they came in and did neurological tests, and every time they asked me to spell world backwards. I think by this time Rose and Wilder had been through my whole contact list and notified everyone. My blood pressure was elevated due to the stroke so they gave me something to lower it, then I was wheeled upstairs into a shared room. The same doctor that intimated that I could just be having some hormonal issues then came in and said very seriously... "well, you have had a stroke." And they would keep me for 24 hours and watch me since "any damage will occur during the next 24 hours" he then asked if I had any questions and left. My memory is not highly accurate from this era of strokehood, but I do remember being dumbfounded. And that he couldn't answer any questions that we posed. Rose's best friend and mother came by. The staff took me for a scan of my arteries and heart. Rose recognized a staffperson who worked in the hospital as being "the wasted funny woman at the 4th of July!" -- that is small town living for you! She said she was sorry to see me under these circumstances. To digress as I always do, that 4th of July was a great education for Rose on being drunk. Since everyone there but us was plowed and exhibiting all the classic types of drunk : from the I love you, man, to sad, to dangerous (carrying a open fire pit with a blazing fire on the back of a truck) to crazy, beligerant, and foul mouthed. It was nothing I could have taught her by telling her the intricacies of alcohol, she got to see it in all its stupid glory.
Anyway, back to stroke. Basically they were admitting me to the hospital for observation and stabilization. After a few hours everyone went home, that is when it got rough. What kept me together was a nurse named Sarah. Or I think her name was Sarah. My friend Lisa had drawn a picture of me on a horse on a whiteboard behind my bed. When Sarah was in folding my discarded clothes she commented on my pants and said she had a pair and loved them. I said they were great for riding because my childbirth pooch doesn't hang over the top, they are high enough. She laughed and agreed, turns out she had a horse too. I don't remember what we talked about regarding the stroke, but I remember her hug was deep and warm, and it felt like everything might be okay. I told her I felt like a sitting duck just waiting for brain damage to occur as the doctor said, and the fear I had for my children. Somehow she calmed me and listened. She also normalized things by bringing in her phone with pics of her horse and told me how she got it. Again, that the world did not just end, there are still stories being made, horses being ridden. It is wonderful to be pulled out of my own space into the bigger world. The nurse the next day told me Sarah used to be a bartender, so has finely honed listening skills. It was perfect for me, and the only manageable moment I remember from the hospital. That and my friend Evelyn's visit the next day, where she advocated for me and told me stories. My night nurse was brought over from another department, and not the brightest bulb. It is sad that me having had a stroke noticed the diminished mental capacities of someone taking care of me. Like when I told her in the wee hours of the morning that my blood pressure was too low... she didn't know that, and seemed confused as to what to do. But I survived the hospital and its parade of hush voiced PT's, OT's, and doctors.
Next... the neurologist in Seattle.

Saturday, September 29, 2012

Stroke Story Part I

I get asked alot about my stroke -- if I knew I was having a stroke, what it was like, how it happened. Looking back on it I see now that there were episodes leading up to it that were red flags. Slightly elevated blood pressure for about three years. Pounding heart and uneven beats for about two years. Four visual migraines the week before. The visual migraines - losing sight with no pain- started after the birth of our son around age 35, and I only have one every two to three years.
The migraines and extreme sudden dizziness that happened two days before were the big flags, but with most things got brushed off. Called my doctor. Heart palpitations? The medicine I was on for my blood pressure. The migraines? Menopause or allergies. In fact, many symptoms were explained away by perimenopause.
After the first dizzy spell on a Monday, where the world suddenly reeled, spun and then stopped, I knew something was different. It felt like being on sudafed... kinda like there is a big fuzz over my brain. That evening, I had a dinner to attend, and I remember it was all I could do to pay attention to what was being said. I was very tired, and things became "simple". I had that feeling many times pre and post stroke, the world becomes compartmentalized, and simpler. I realize now after reading about it that is because the brain has to pay attention to everything -- the part of cognition that is automatic and running in the background, i.e. The tv is on, someone is doing the dishes, the telephone rings, the dog is hovering 'cause she's hungry, someone is talking to you.... is altered. Whereas before all those things could be occurring at the same time and you isolate the conversation, my brain couldn't isolate anymore, and all of life's happenings came in at the same importance level. It was simple, because basically I could only focus on one thing at a time.
On Wednesday morning, I woke up and had my regular cup of coffee. After about five minutes it did not taste good anymore so I set it aside. I felt dizzy in the bathroom so went outside to feed the chickens and horses and it lightened and went away. Wilder had a doctor's appointment and so we were getting ready to go. I walked to the front door, knowing something was not right, but forged on. Wilder came outside with me to get in the car and asked if I was alright. I had been speaking to him with a slur, and was having left side failure. My brain was sending the words out correctly, but my mouth could not navigate creation of the sounds. I have not forgotten the look of fear on my son's face when he looked at me and said something's wrong. That's when I told him to get his sister to drive me to the hospital. She ran downstairs in her pajamas. (She didn't change out of them until the evening when her dad took her home) I decided I should go to the bathroom first. That is when I had major left side failure. I started standing up from the toilet and sliding to the left toward the wall and floor. I remember thinking that something was not working right and being somewhat surprised... like What?! Oh no you didn't... you are getting your butt up. I still remember the will it took to get my body upright -- my leg shaking and my brain solely focused on being upright -- but I was not going to traumatize the kids further. And really, what would be more traumatic than a mumbly mom on the floor of the bathroom with her pants down? The stroke at this point was coming and going, I was having intermittent left side failure. This is also possibly due to an embolic ischemic stroke, a clot that comes from the heart, and then dissipates into many little clots. Reminds me of the Angry Birds bird that starts out as a single, but breaks into several smaller bombs. (This stroke cause is a possibility, not a definite. They still don't know why I had a stroke, but are narrowing the options.) Next up: To the hospital.    

Wednesday, September 26, 2012

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.

Gall Bladder

Met the surgeon yesterday who talked with me of surgery options.  I have one stone that is about ten years old, and all the rest are new little guys.  Diet change, estrogen, and the statins are to blame.  After the stroke when I went cold turkey on so many foods --- no deep fried, no oils, no butter, no beef or pork, no sugar.  Since then my diet has gotten more realistic... I have added cookies and pies back in.. but alot of foods I just no longer eat.  WELL, looks like that and bein' a girl have lined me up for a whole bunch of baby gallstones.  Doc said all the new ones were formed in the last nine months (about when I had my first attack. )  The big old one I remember having in a rental property we had when my husband and I were separating.  I blamed it on food poisoning.  It was a gallstone.
The surgery is laparoscopic, I walk out of the hospital the same day, with about a week recovery.  Doc says we don't need the gall bladder, I won't notice anything other than I won't be getting sick any longer.  Such a perk. 
(Karen Anne, this is not the posting I was referring to, still writing that one!)

Thursday, September 20, 2012

Visiting the ER - two times - what fun

This weekend I had the type of dizzy spell that they tell you not to ignore. Where holding onto a post would not do it so I went down on all fours. I did not ignore that, got on the ferry to Seattle, and went to the ER.  They did their usual tests and I stayed in town to check in with my neurologist the next day.  He ordered an MRI, and battled my insurance for 25 minutes to get it approved.  Everything looked normal... so he thought the dizziness was not stroke related.  He said that is the challenge - unraveling what is because of the stroke vs. the tumor.  He forwarded me on to a otoneurologist.... since my tumor resides near two nerve bundles - one balance, one hearing.  Stayed over again and got take-out from Whole Foods, including something I never eat - a brownie.  I ended up in the ER again for incredible stomach splitting pain and other stuff... this time turns out I have gallstones.  Before two days ago I was not even sure what the gall bladder did.  Now I know.  And mine does not like brownies.  (But I do!) I still think it is related to the statins...

Friday, September 7, 2012


I have a new doctor.  And am really missing my old doc, who knew everything about me, and basically knew me.  My new doc and I don't know each other so we have that dance of how to talk to one another for maximum comprehension and clarity.  I think she is too quick to send me off for in-house testing of every ailment. We have to work on the trust... that I trust that she is not making her hospital money every which way and she has to trust I am an involved patient and know my body. Kinda. As well as I can know a dumb body that throws strokes and tumors at me seemingly at random. Sorry, I am in a mood.
She does not know I do not like focusing/talking about my medical ailments, and I sometimes forget all the things going on.  So if I am in her office, even though I may be calm, it is usually serious. 

But she at least does what I want within reason, if it sounds reasonable.
I had another bad reaction to something.  She thought I was having a gall bladder attack.  I think it is the damn statins.  She may be right, but I am switching drugs first... just in case.

Monday, August 13, 2012

It's the little things. Disjointed posting.

I realize my stroke story is on the other blog... at some point I will move it over here.  I feel the need to document all the little differences of life post stroke.  I don't always remember all the details of this unchosen challenge I walk -- so it helps to write.
1. Yesterday was the downside of "compadres".  An old friend called and said her young sister had a massive stroke and died.  I was so sorry as this kind of loss is traumatic and she is one of the most caring, giving people I know (she is actually a hospital chaplain alongside teaching full-time).  But I got the feeling she was telling me since I was a stroke participant. I don't know what to say to that. There is good, mediocre, bad outcomes in life?  I am sure it was just to listen. And listening I can do.
2. Also yesterday morning I was upstairs rummaging through the cd cabinet looking for music.  I picked out a couple and carried them to my car.  As I was driving off I leaned over to pop one in the cd player--and, one of the cd's is not what I picked.  I only grabbed two cd's, that were a foot in  front of me.   I am still mildly amused when I make mistakes.  The thought is present.  The intent is there.  The action is completed.  But there is some detail that goes all wildcard on me.  Was it my hand faltering short when reaching? Was it my mind going elsewhere at the last minute so I did not focus on grabbing?  I remember noticing this cd, and thinking that it was very 80's, was that enough to send my brain reaching for it, rather than the one I wanted?  No memory. No idea.  But still fascinating.  When I have to rely on this brain to support me at a full-time job, we shall see how humored I feel.  But luckily, right now, I can enjoy the quixotic spasms of quirkiness.  Sometimes I think it is strange how (prestroke) competent, know-it-all, do-it-myself me has a stroke that has me accepting a) brazen mistakes, b) unknowing, c) help from friends.  

Tuesday, August 7, 2012


We went up to Friday Harbor this weekend for a big pig BBQ.  Three people turned 60 this year, and there was a party, farm style.  Big tables laden with food, lots of LOTS of people, a couple kegs, boxed wine and lemonade.  This used to be my hometown, and why I moved the kids to Poulsbo... I thought it would be like growing up in Friday Harbor.  Alas, nothing is like the 70's and 80's on a seventeen mile long island in NW Washington! 

Courtesy Washington Land and Homes
A fellow I have known my since I was 5 walked up to me and said that we should talk.  He is a member of my honorary extended family but he and I never had much to talk of. Now we do. He said he had a hemorrhagic stroke 6 years ago. From there it went winding down that stroke story path. There are conversations I have had that go on between us stroke survivors that immediately go to the serious, open-hearted and supportive.  A comraderie that happens that you can only understand if you have had a stroke.  We know that we may be changed, and have different skills and abilities, but we are still ourselves.  We all faced that wall of fear, of undoing, and rebuilding.  The conversations that I have had remind me that we go to a horrible, horrible place and then we navigate how to live our lives beyond it.  Thanks, Kim.

Saturday, July 28, 2012

Re-reading books and magazines

I found a magazine when I was cleaning up yesterday on "how to stop procrastinating".  I know I read this article when the magazine first came in the house but thanks to some short term memory issues I can read it again since I don't recall a bit of it.  I spend alot of money at the my local bookstore... maybe this will save me some bucks since I can just reread the books!   In a week,  I go to a new PT/OT/speech therapist to get tested for my memory, movement and speech. I imagine she will find other things to work on, too.

Thursday, July 26, 2012

One year anniversary.

One year ago I had a stroke. Soon after I went into my doctors office (if you are in Seattle and need an excellent neurologist -- send me an email). Unable to walk straight, unable to stay awake and alert for more than a couple hours, overwhelmingly terrified with how my future had just changed... my doc cleared boxes off an exam table (he had just moved into a new office), told me I wasn't on the right meds (given to me a week before by the hospital), told me they had misdiagnosed my type of stroke (nerds), and then looked me in the eye and said " In one year you won't even know this happened." Meaning that I would have no visible outward remnants of part of my brain being dead. I remember thinking he WAS NUTS... but he wasn't. Today I am close to how I was pre-stroke. Other than I weigh less, have a bit of short term memory spaciness, my muscle mass is different, I say things "differently" at times, and am on cursed cursed prescription drugs. But who's to say I wouldn't be a little ditzy and tongue-tied at this point anyway?
There always will be the life shift that happened on that day. I went from being in control of everything... farm, kids, finances, future -- to being in charge of not hitting the door jamb with the left side of my body when I stumbled unevenly through a door. I learned to accept help from others. My way of looking at life, disability, and independence took a tumble toward the real. You know, that we are not actually in control? I am very good at ignoring the unpleasant. Probably why I can own an old house... I can just merrily trudge through my home repair to-do list as an oblivious optimist. I read sometimes that when people survive something drastic they change their look on life. ( I have Tim McGraw's "Live Like You Were Dying, " going through my head right now). I thought all these life changing thoughts for about nine months and then realized : I wouldn't do anything different. This is the life I would lead if I knew I was going to die in a year. All the mistakes I've made, all the successes, my failed marriage... I wouldn't do it differently. I've got great kids, love where we live, have always had jobs that were ones I picked for interest and luckily supported me. I have not solved any world issues. I don't know how to stop young men from taking guns and harming strangers. I have not found the cure for cancer. But I have lived, gave friends hugs, had long conversations with my ma, laughed until I peed my pants (wait, should I be typin' that?), watched my kids grow with pride and love. I guess I don't record what is important to me anymore as the accomplishments that list my resume, and I used to. That is not what I will take to my grave, and that is certainly not what I thought of when I was in the hospital waiting for my stroke to do its damage.
Best to you all.

Saturday, July 21, 2012

Brain Attack

There was a radiolab show titled When Brains Attack on the NPR station last night.  I felt for sure they would have a stroke story on there and listened... but no. They were brain attacks from everything but strokes... a bad side effect from a prescription drug, a car accident brain damage and a seizure from a tumor. When the medical profession decided to work the "brain attack" into the stroke lexicon, so the public would be more aware of the urgency then shouldn't the media carry this torch onward? It would have been very easy to add a stroke story to that line up... I know I have read a few of your stories that would be great on a radio program!
Link to the RadioLab program here...

Sunday, July 15, 2012

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.

Saturday, July 14, 2012

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.

Sunday, June 17, 2012


I took a walk today.  One where I noticed the trees, the water, the other hikers. There were flowers in bloom along the path that I kept wondering "That looks like a noxious weed... I wonder if it is?  Hmmm." (We have alot of noxious weeds around here).
 At one point, I noticed my left arm swinging along just as my right arm was with the pace of my stride. I wanted to cry, or laugh, actually cry while laughing... since my arm was no longer hanging limply as I walked.  These simple things make me so happy. 
Amanda,  my hairy walking companion.

Tuesday, May 22, 2012

Getting a job

I got a job.  I work in a nursery and set up and do their "how-to" clinics. I am in heaven there, but give them back alot of my paycheck... gorgeous veggies and plants!   I actually got the position about 5 weeks ago and it has been eye-opening. A little intro into "My Brain post tumor and stroke"  I am the same person with the same knowledge... I just access it diffferently and am slower to process things.  It has been hard, tiring, a challenge to keep track of all the new stuff, of the verbal commands given rapid fire. Actually that is funny to type, because they were not given rapid fire, but I don't seem to have the memory storage location for short term data so the instructions go in... and then scatter in the memory wind.  My visual memory is affected, I realized when I am told directions in the past I visually imagined the location.  I cannot seem to imagine the location, or if I do, I forget that location after a couple minutes. I have to ask for clarification on things that I am pretty sure I would get pre-stroke instantaneously.  It is getting better, I couldn't follow at all in the beginning, now I am able to sequence memories.  But if I get interrupted it all goes to pot.  After five weeks it has settled in and I am clicked back to my old work habits.  It is somewhat a relief to see/feel/experience my brain grinding through things and coming out the other end still able to function. It has taken a while but I see vast improvement that I know wouldn't be happening if I was not working and refreshing that particular skillset.  Its like there are things still funky in my brain (duh), but I have to mentally access and physically process it again before it clicks back into place and operates.  I am glad my perfectionism seems to not kick in about this... it just lies there watching and letting me do things slow.  No one at work knows of my brain excitement of the last year, I don't like that they probably think I am a bit slow on the uptake-- but on the other hand I am so happy just to BE.
Probably why some days I am just beat.  At least I know it is because something unaccessed is being worked on.  It is also good to work because I am tackling those stroke fears one at a time.  Considering my stroke began at my previous job I still had residual fear that if I worked I would get a stroke.  Unrealistic, nonsensical, irrational, yes.  But there is alot of that to deal with.  Like if I have caramel cone Haagen Dazs ice cream I will get a stroke.  Because I had that the night before.  Ditto on a Red Robin hamburger.  Between superstition and the false sense that I can control things that are beyond control and unknowable I have to let that fear go one at a time. The AA term one day at a time... I finally get.  I hate to say I am a better person after my stroke, but I am a different person. And some of those make me better able to slow down my life.  I recognize I have a strong character that wants knowledge, to be in control, to make things "right".  And I just got smacked upside the head to live in the present, and just roll along through the bumpy life that embraces me.
I should probably open my eyes for pictures...huh? You can see my lopsided stroke smile here.  My neurologist always checks this smile  first, I don't know why...

Wednesday, April 25, 2012

MRI song

When I heard this song... I instantly went into that zen I go into in the MRI machine. ( I think I have had way too many of these MRI visits if I am starting to get all zen about it...) Do you hear it?  The repetitive bonking bonging noise? I swear I heard that series of sound last time I was in the claustrophobic tube of loud sound. If you don't want to listen to the whole song the sound is at time marker 1:15.

Thursday, April 19, 2012


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.

Tuesday, April 3, 2012

Head Injury Club

Picture: Rose and Wilder laughing at the ice cream store.
My kids went to a coop preschool and a community driven public elementary school when we lived in Seattle. Yesterday we stopped in and visited their old grade school...Rose had not been there in six years, Wilder in four. They had a blast, saw all their old teachers and got hugs, and told stories. I was in the office with the Principal John and the wonderful office gals when it came out that the principal had a vessel burst in his brain last fall. We fell into that talk of doctors and PT and health. He did not have a stroke, but his recovery was similar since the burst blood vessel was in the same area. I told him it was nice to see someone who had a major brain trauma still out in the world (and running the school), that we tend to become invisible after a trauma such as this. We talked of slurred speech and dizziness when tired. After a bit John looked at me and said "Welcome to the club."

Tuesday, March 27, 2012

To the doctor

I am going to start adding pictures to my posts --- that are totally unrelated to the topic. This is Amanda.

It is time for my monthly visit to the neurologist. My doctor is a sparky dark-haired man with a warm straight-forward temperament. He lectures me (strongly tells me) not to mess with my medicines and listens for as long as it takes to figure out what I need and asks for clarity and specifics when I descibe symptoms. No matter how many people are in the waiting room or how long over my appointment time we go. Phone calls come in during our appointment, but he always apologizes before and after taking them. He usually runs late, and he apologizes for that, too.
A doctor that has the knowledge without the attendant arrogance. Being a NW gal, I have never been fond of educational arrogance so I am lucky my doc does not embrace that. So is he for that matter. (Last week I went to the tumor neurologist. He looked at my MRI and said... well, I can't tell anything from this come back in December. So I guess I will be going back in December.)
My vision seems to be getting worse, bouts with dizziness sporadic, my ability to resist sugar non-existent. I am back on glorious glorious caffeine daily and we have joined the YMCA so I am exercising. I give him updates and he talks to me. I am still not satisfied with the unknown diagnosis of the cause of my stroke, but realize in our tightly-controlled insurance-driven medical field it will not be answered.
On the bright side... my decision whether to take hormone replacement therapy or not has been made for me, I am no longer eligible due to the stroke. So I need to put no energy in that decision!

Sunday, March 4, 2012

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....

Wednesday, February 29, 2012

Tumor update

Tumor: I am due to go into the doc for a follow-up on how the radiation went. That it stopped the tumor growth, slowed, or not. I have since read that the dye they use in the MRI is not so good for you. Sigh.
Meds: Switched statin medicines. Just heard the news report about significant memory loss when patients are on statins. Also moved taking my blood pressure pill to the eve - and 85% of my dizziness is gone. I am getting frustrated with realizing my (tumor? stroke?) symptoms are sometimes just the medicine.
Health: Joined the YMCA. This is the hardest thing for me, since my heart starts 'thumping' at night hours after I exercise, hopefully it will even out.
I have to have faith that my body will reach, is trying to reach an equilibrium. That there was a reason I did not eat fat, sugar, sodium for 2 months after the stroke... my body needed to clean something out. (I would not voluntarily eat like that pre-stroke!)
Same with exercise. I need to build stamina, and there may be some issues at first, but I remember these drugs I hate being on are actually there for a reason.

Sunday, February 12, 2012


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

Saturday, February 4, 2012


Haller Fountain images courtesy "Glabah" at
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?

Sunday, January 22, 2012

Stroke Support Group

Traveled to Seattle yesterday for a Stroke Survivors Support Group.  I think I am too close to the stroke for a group setting... it may be my mood but the meeting opened my fear door wide to hear endless stories of multiple stroke episodes by so many people. I am not far enough away from it all not to have that nagging feeling of having another stroke at any time.  My rational thought says : you are on meds, you eat totally different, you have no stress (other than the ominous threat tumor and stroke), the perfect storm of hormones and whatever that created this mystery is no longer.  But my insane side says: I could keel over at any moment. So a group of great people saying my worst nightmare was not helpful. 
I was the youngest one in there, and upon entering was asked if I was a caregiver.  I said I had a stroke, which pretty much stopped inquiry.   If you were in my spinning head, aware of my "drop things" left hand and slightly stumbling left foot trying to find words to string together out of nothingness you would be able to understand.  But I guess from outward appearances, I look like a caregiver.
This all being said it was a fantastic group.  The spirit in the room was so supportive and positive, and it was a joy to have other people understand having a stroke without the hushed tones and serious faces.  Everyone there got it, and there was room for finding your words, or word, and dropping your cane and being allowed the time to pick it up.  Where having a stroke was treated as normal -a part of life- and being dealt with by spirited individuals. That is not quite the word I am looking for... but folks with hutzpah.  Energy for recovery, research, communication, stick-with-it-ness.

Wednesday, January 18, 2012


My neurologist and my regular doc of 14 years had words.  All because my doc put me on fish oil rather that a statin drug that gives me nasty stomach pain.   My doctor and her nurse both gave me a call that my neurologist was concerned... my neurologist saying (to my doctor) there could be "dire consequences" if I was not on the statin.  My docs reasoning was that my cholesterol is not high, I do not have any narrowing or clogged arteries, that it is being used as a preventative, and fish oil would do the job without the side effects.  My neurologist is adamant about me taking aspirin, the statin, and a blood pressure as a deterrent to further strokes since the reason for my stroke is unknown.  I am at this time undecided. I think I will take half the statin coupled with fish oil.  I hate hate hate the idea of being on drugs the rest of my life, but am doing it because of the "risk of stroke" hanging over my head. And I have been very reliable with my drugs, taking them daily.
Anyone else have this drug cocktail as a preventative?

Tuesday, January 10, 2012


I go to my check-up (which is really more of a check-in) with my Seattle neurologist tomorrow, Wednesday.  When I first saw him it was about a week after my stroke, and I could not stay awake, or upright. 
At that time he switched my meds from the hospital prescribed ones and corrected their misdiagnosis of what type of stroke I had. Also sent me for a different MRI, since he couldn't get accurate detail from their originals. 
It is interesting, since he is so hands off. No blood pressure check or med check.  He pokes and prods and has me smile to check my left side responsiveness.  He tells me I look really thin, and asks if I am eating. Before my stroke, I had not gone to a specialist beyond a dermatologist to check out a mole.  Mine is a great listener, but also such a specialist he is intrigued by the unusual. The medically interesting. Like his patients are all fascinating puzzles to be solved.  When I tell him my heart feels erratic, he sends me off to the cardiologist.  When they find the tumor, he sent me off to the neurosurgeon.  I am missing that pull-it-all-together person, it used to be my regular doctor but this is all out of her league.  (I think I still harbor a wee bit of resentment because of her response to my pre-stroke series of migraines --she attributed it to menopause, which she did most my physical symptoms. And I will forgive or at least my expectations of perfection from her will subside and become more reasonable again).
My neurologist asks me about my mental state, and tells me that it is normal to need some assistance getting through the emotional side of things... not just the PT, OT, etc. which deal with the physical.  I already have a therapist and have added a meditation specialist to quiet the 'worrytalk' part of my brain.  I guess this is just part of the healing process.   I feel like there are questions I am not asking him, but don't know what they are.  How do you all navigate your healthcare professionals?  I was taking people with me to take notes and make sure I asked everything I wanted to, which was helpful since I could not ask questions and listen at the same time for a while after the stroke.
Note: It is not truly documented that I ever could really listen and talk at the same time... friends will remind me of all sorts of misspoken sentences and twisted words I used to say before stroke....I even have it documented in a public speaking video.  Strangely, that makes me feel loads better!     

Thursday, January 5, 2012


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.