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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.