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

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

Stroke Story Part 3

 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. 

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.

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."

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!

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.

Doctors

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?

Neurologist

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!     

Fear

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

Coping Strategies - Stroke

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