A Year of Living In My Head

Day in the life

2016-02-08T13:39:00.001-08:00

My life is a continuum. Ups, downs, absolutely sideways. It seems to always be trying to reach balance. Sometimes I am aware of the ways it does that, a lot of times not.

I had a couple dramatic medical adventures.

I have two kids, got a divorce.

I have one great kid still at home. He is 16, and rife with the joys and decimating blows that they can feel. He is also taller than me. It so hard when your baby boy grows taller than you! Sigh.

My 20 year old is making her way into an adventurous, successful adulthood. She chose the bumpy, bruising path to get there, which is not the way a parent wants their child to travel on, but it has certainly made her a wise 20 year old.

I got remarried.

Throw on top of that shock, recovery, getting a job, teenagers, new love. My life has not really quieted down. I am still working on that - The quieting down part.

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

I was thinking this morning (and getting cranky) about a couple who saw me after the stroke. They treated me like I was now operating with minuscule intellectual capabilities. This was a new thing for me. There is a huge psychological hurdle we must jump through - we have had a challenge thrown down in front of us by having a stroke in the first place, but there is a form of discrimination that kicks in from former colleagues, nurses and friends. (My docs do not fall into this area, they are fully versed in the randomness of brain capabilities - with or without a stroke - and have not shown this propensity.) I am a confident, kind and stubborn person, but now my stubbornness is not viewed as my temperament, if it is difficult for people, it is viewed as brain damage. When I am having a brain fart and cannot recall something, the blame gets assigned to the stroke. NOT what it most likely is --- that I am a menopausal woman with changing hormones and body.

If they are aware of my medical history -- they attribute every negative interaction with me as stroke related.

If they don't know my stroke history? They have no problems other than they get to deal with a stubborn, confident and kind person - and we all roll with that sort of stuff everyday in the real world.

This is why I don't tell people my medical history. When I do, I get watched over and mothered. Am I working too hard, too long, quality of life discussions, etc etc. including the insidious "I am now a weaker being" than my previous self. I am aware of my health risks. That I carry a risk in my body that others do not have, an increase in a second stroke. Or for clarification, I carry a known increase of risk, as opposed to the general populace which may have a greater risk but they are not yet a statistic. I may live to a ripe old age and get taken out by cancer. Or dementia. Or twist my ankle wearing some gorgeous but unstable fancy shoes, get blood poisoning from a cut and keel over. There are so many things in this world that are a risk, and that tightly controlling a known risk - stroke - won't really keep me safe. So drugging me up the yin yang with side effects and all because "there is a decrease in risk" for white, 70 year old men to have multiple strokes does not really speak to me as a white female 50 year old of Peruvian-German origins. I understand my docs want to really err on the side of caution. I understand I am lucky, in so many ways. I get that work is stressful for me, and I would decrease my risk if I did not do it. But I do love working. It is all a dance. And we all have the same outcome the end.

Me and daughter

Son...

Marriage-

Statins - again.

2014-12-20T09:09:00.001-08:00

I returned to taking a daily dose of statins. It started slow- my internist wanted me on them, even if it was once a week. My neurologist wanted me on them. Both extolled its virtues endlessly. I slowly, over the course of 6 months, went on a daily dose again.

Thing is, I almost checked myself into the ER last week because I was losing it verbally. I could not recall simple words. People's names. Every once in a while I could not finish a sentence without slurring. My boss started noticing. Spell simple words like "quiet". Then I remembered. (Which is a big deal!)

It is the damn statin. Went off of it a week ago and it all came back. That is a scary drug for me if I need to work and be a modicum of clever. It takes my verbal abilities far, far, away. Luckily they were still there in my brain. A double-edged sword...supposed to be on it for stroke risk prevention, but I can't if I am to perform in a work setting. I know this does not effect people the same way, and I wish I had mellower side effects. It is a dance we do. Survival chances, health risks, life choices...prescription drugs.

Waiting, or not.

2014-12-10T20:45:00.002-08:00

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

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

Working again.

2014-04-30T20:04:00.001-07:00

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

2014-02-15T09:23:00.001-08:00

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.

Healthcare - insurance costs

2013-10-31T20:47:00.000-07:00

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.

Gall bladder firmly out

2013-10-08T13:29:00.000-07:00

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.

Surgery- Gall bladder

2013-08-07T07:52:00.002-07:00

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

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

New Internist

2013-06-25T10:29:00.001-07:00

My neurologist has been working on me a while to get an internist. I have so far tried out two - neither which clicked with me.
Trust. The first, when I told her my blood pressure ran high during menses she cocked her head sideways and said "Well, that can't be, why don't you come in and have the nurse take your blood pressure at that time and we will see". Like a) her nurse will get a more accurate read than my home cuff or the drug store and b)it is all in my head and she needed an official nurse reading. Also, her office was a ferry ride and 30 minute drive away.
Trust. The second charged me $310 a visit because I needed the "highest level care". She was never with me more than 10 minutes, frequently did not remember things she was going to do, and never crossed from her side of the room over to mine. Not sure that is $310 a visit care.
Yesterday I went to a new doc. Energetic, alert, super up-to-date knowledge, he spent the time, asked a lot of questions, and may be a good fit. Every record he makes will be online accessible for me to see and be a reminder of all the things he and I want to do. So if I forget that he said to monitor my blood pressure at 9am and 9pm I can check that.
The only thing I had a problem with is that he questioned whether some of my stroke symptoms were really psychological -- if the symptoms I experienced post-stroke were my mental gymnastics in trying to cope with a stroke. He was asking if the brain shut-down, slurred speech, uneven tilting walk, brain sparks, dizziness, unawareness of my left side, tripping, dropping, memory holes were from the stress of dealing with a stroke? The mind-numbing fog that descended was mental? I know he will change this thought process once he sees where my stroke damage is. The distinct MRI image pretty much shuts doctors up, and they realize this is not all peri-menopausal female issues. (Yes, I have frustration issues with the wide swath being female has cast over my health care).
The first thing he asked after we went through medical cursory questions was : So tell me about your stroke. I did a big pause, and then laughed. I am not sure he understood. That is a loaded question. This thing that I have been working into the concept of my life, and my concept of death is so much more than a two minute disembodied trail of symptoms, and each time I tell the tale there is a different angle. I don't think I can tell you about my stroke is one fell swoop. Do you mean the series of physical events leading up to it? Do you mean what happened physically and mentally afterwards? Do you mean how they treated it? What tests I had? What they ruled out? What they don't know? What I do? How my life is now rolling down an entirely different track... some of it chosen, a lot of it chosen for me? I know, I know he meant the western medicine list of physical details. But that isn't anywhere near the whole story, is it?

Locking mechanism on my bathroom door that I pulled apart to fix. This is an easy fix. Other things, not so much.

Some fears still hanging around-but getting on with the daily chore of living

2013-06-18T09:06:00.001-07:00

On Wednesday I will accept a position on the board of a museum. One year ago this would have been a pie-in-the-sky concept, since I was immersed in "what-if's" and healing. What if I rev myself up into another stroke. What if I have another stroke. What if I cannot grasp detailed concepts. What if I forget stuff. What if I fall asleep. I don't have as many of those anymore, or if I do I see other people my age without strokes in their past and realize, "Holy Crap, their memory is shot and they fall asleep too!" .
My part-time job of last summer helped me back into the pacing of work. I took the winter off to focus on family and farm (which was good because two teenagers just about aged me 22 years in seven months).
I am gearing up for going back to work and getting a divorce. All which I was doing pre-stroke - but rapidly ceased at my forced life hiatus.
I have learned when to take a step back. An adrenaline junkie, I love revving up under pressure to accomplish things. I know when my physiology is amping up and I intentionally divert that energy to a different place. That feeling of being keyed up now is a warning sign to me. That is where the fear comes in... that if I live my life the way I did, that automatically I will wander down the same path and have another stroke. There is no logic to the situation when I am thinking like this, just an irrational fear. Almost like a baseball player and their superstitious repetitive movements to bring them luck - I cannot overcome these fears except with time.
Example: During my three-day stroke, I was in a big box store and the neon lights in the back of the store made me feel unbalanced, nauseous and tippy. So, if I feel like that in a store,(which I still do sometimes) I try to overcome the fear that starts welling up and wait it out. I remember: I do not have the same circumstances of health that I did with the stroke. Just because I am feeling light-headed does not mean a stroke is imminent. I do have some perception differences post-stroke and tumor, and this may be one of them. I have found the passing of time is the only thing that truly heals this fear. no doctor has been able to explain this.
The job was the same thing. When I would get very tired and have more pronounced head fog and slurred speech, I would worry. As my stamina increased, that diminished. So as I worked, my fear quieted. The goal here is to make it quieter, less urgent, and then send it away.
It is all a learning process, which is ideal for me. It is good to learn that life is finite, and appreciate it for what it does bring, not fight against what it does not. This may all common sense to you, but I used to have the illusion I controlled my life a bit more than I do.

Pharmacopia

2013-05-02T10:13:00.001-07:00

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

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

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

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

Physical Therapy - again

2013-04-14T07:43:00.000-07:00

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

Doctors and trust

2013-04-10T05:50:00.004-07:00

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

Body awareness

2013-02-28T07:15:00.000-08:00

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

Son Wilder's art project for school.

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

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

Stroke Story Part 3

2013-02-21T20:03:00.000-08:00

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, entirely 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 my crappy local 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 walked 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.

I send out a lot of random prayers for health for other stroke recipients... since I received many from people I have never met. And this is not like anything you can prepare for, so random prayers alongside whatever your health providers do, whatever your family can give, however your friends can be there for you... it is all okay.

Never Silent

2013-02-18T07:06:00.002-08:00

My house is in a very quiet location. There were many things more pressing and needing attention post-stroke, but one of the most insidious that nothing can be done about is the ringing in my head. I know I am not hearing the sound actually, that something is damaged in my auditory area or processing area so I think I am hearing this incessant whining, buzzing, ringing tinnitus. I used to love the silence of my home. But now when I am still, with no movement so nothing stroke related is apparent...I have a really loud reminder that something is amiss in brainland. I am getting hard of hearing because I think everything has to go through and above that noise before it is heard. (Or, alternatively, I could be hard of hearing because I listened to loud music over headphones in my youthful days....)
But the ringing is pure a stroke side-effect. Blah to you, stroke, for taking away silence.

The reports of my demise have been greatly exaggerated

2013-02-13T07:41:00.001-08:00

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.

Not medically significant - stroke causes

2012-11-15T06:55:00.000-08:00

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.

Stroke Story Part 2 To the Hospital

2012-09-30T21:44:00.001-07:00

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.

Stroke Story Part I

2012-09-29T22:04:00.000-07:00

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.

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

2012-09-26T23:07:00.001-07:00

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

2012-09-26T08:22:00.000-07:00

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!)

Visiting the ER - two times - what fun

2012-09-20T16:25:00.004-07:00

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...

Prescriptions

2012-09-07T09:17:00.000-07:00

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.

It's the little things. Disjointed posting.

2012-08-13T11:58:00.000-07:00

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.