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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.