Monthly Archives: January 2011

frustration, loss, recovery, sad

I miss sucking my thumb

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Good days and bad days … and I rarely am brave enough to share a bad day. On those days I just get quiet. Well I am learning to be stronger for myself and my own limitations… Here is a glimpse behind the curtain.

I find it hard to keep up with life some days. My house gets busy, the world can be loud, the tvs bring chaos and we all have needs.

I vaguely remember napping as a little girl. I miss it. Being on my Mom’s knee and sucking my thumb and finding comfort in the rhythm of her heartbeat. I miss her and I miss that phase of life. Remember being in the line-up for a cuddle with your parents? I do… and then we grow up and we love more and more and more.

Then suddenly your parent can’t hug you as often (but THANK YOU to my Daddy who is always ready for a hug) and you notice that the lineup waiting for you forms on the right and stretches for miles with hopeful, loving faces shining at you…

I am still so fortunate to have such wonderful people around me but like everyone else, sometimes I just need to curl up in a quiet space and suck my thumb and cuddle under a blanket while my head heals and I cope with my new self and my new limits.

Today, I spent my time getting my meds ready and sorted in the weekly dossette case, I planned a dinner for the family, I showered and dressed and I coped with a busy home, I will happily cook today… and yes, that is all I can manage today. If your e-mail in unanswered in my inbox all I ask is for patience. I still do feel guilty when I can’t please peole the way they deserve… that is hard.

And if, on the other hand, you too are recovering from your own stroke (of genius), you are not alone if you feel tired and lost and lonely sometimes. I think it happens to all of us. And my experience so far reassures me that tomorrow is always a bit brighter and as we get closer to Spring, the sun stays up longer for sure.

God Bless you all.

Jen

When I was a child, I spoke like a child, I thought like a child, I reasoned like a child; when I became an adult, I put an end to childish ways. For now we see in a mirror, dimly, but then we will see face to face. Now I know only in part; then I will know fully, even as I have been fully known. And now faith, hope, and love abide, these three; and the greatest of these is love.
   ~ 1 Corinthians 13.11-13

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THE SCENE BEHIND THE CURTAIN:
There is music playing softly in the basement, children laughing as they play, a tv playing a cartoon, a friend is in chat telling me that they love me, my husband asks what is for dinner, the dog whines to go out for a pee.

OLD JEN: tells the chat friend to hang on, speculates about dinner options as she walks to the door and rewards the puppy as she lets it out and tries to think of the name of that song playing downstairs while she glances at the TV subconsciously evaluating appropriateness.

NEW JEN: can’t remember what food we have, feels overwhelmed and scared by the noises, tries to determine if the kids are making happy or unhappy sounds, shuts the chat window unexpectedly and cries.

family, memories, recovery, stroke

In and Out, Round and Round, Upside Down and Back

I remember as a little girl dreaming big dreams. Recently, I shared with a dear friend that I used to want to be a ballerina, and a prosecuting attorney, and a teacher, and an astronaut and the Prime Minister of Canada (yes, all at the same time).

But my dreams didn’t end as I aged. When I was in my early 20s I recall feeling certain that if I flapped my wings hard enough I would fly. At night, I would dream of soaring high in the sky – sun and wind and nothing but the open horizon … and the freedom of life.
 
Then, around the time that I spread my wings and left my parent’s safe nest, life was complicated with terrible experiences in so many ways. Despite the protection, love and care of parents, life eventually taps on everyone’s shoulder with a sucker punch. That said, you too have likely suffered your own scars or bruises and I am always grateful for my blessings – mindful that no matter what challenges I have faced in this world, there are those who face worse every day. Today, I think in particular of those who are sick, or lost, or at the mercy of the world with a nation nothing like Canada to carefully provide for them as much as possible.

Interestingly, my dreams have recently returned to vivid and colourful experiences very joyful and similar to my youth. If no more is possible, I wish colourful and joyful dreams for those who suffer.

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Okay so for those who are following my stroke recovery, my latest challenge has been my incision’s very poor progress to heal. This week I was started on antibiotics to ensure that I don’t have an infection in the vicinity of my brain surgery. Of course you may recall that the surgery was September 8, 2010 and we are soon approaching five months. My antibiotic should be helpful but I am being cautious not to expose myself to any unnecessary viruses.

In INR news… my INR skyrocketed to 3.9 just over a month ago and then plummetted to 1.4 a few weeks ago. This week it was 2.4 so my thrombosis team is pleased with that result but they expect my antibiotic to destabilize my INR levels again… luckily, I have the best medical assistance and I have become quite fond of the woman I spend so much time with giving her a vial of my blood once a week (*waves* Hi Sophie).

Time for a rest … but … if your birthday is today (and you know who you are) I send out a birthday wish and much love for the coming year with wisdom, peace and good health.

Jen

My youngest son’s Get Well card art
creativity, hope, online, recovery, strength, stroke

A New Year and a return to the keyboard

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First of all Happy New Year to you all… and it was so nice to begin this project but as you can see, the holiday season and the pressures of recovery took me away from writing to you.

Know that I am still taking it one step at a time.  🙂

For today’s posting I am going to share the contents of an e-mail I sent to the Acquired Brain Injury clinic where I will soon be going for assistance with rehabilitation…

They asked for input into my areas of challenge. Here is my response:

“My problem areas are very clear to me:
  • I cannot manage telephone calls (too difficult to word find in addition to listening to a phone conversation – seems easier when I am face-to-face with someone). If on the phone I require to take notes or I will not be able to recollect the conversation. I also have to cover my eyes and plug the free ear so that all my focus can be with the phone.
  • I cannot manage distractions at all. I have had to ask the boys to line up to speak to me and if the dog barks or phone rings or I am trying to type something there is no room for anything else at all. When there is alot of stimulation I feel panicky and lost. It also makes me irrationally angry.
  • I cannot watch TV due to jumpy edits and rapid or frenetic content and I need silence to concentrate on anything (on a good day music can be tolerated). I have seen a movie with my Dad and enjoyed it very much so that was nice.
  • I cannot read due to distraction and even in silence I have to reread paragraphs many times to ensure that i can remember it for a little while. Similarly to the telephone call, shielding my eyes and blocking my ears helps to some degree.
  • I have a great deal of memory problems (short term and long term). My husband will have to tell me occasionally that we have already discussed something recently.
  • my visual memory is much better than recall for oral or e-mail conversations so i may not think i have been somewhere but when i see it I can recall it
  • I have many word finding challenges and work hard at it with strangers etc but am at ease with my family so I just say stupid things to them like asking them to clear the table put their doors (not dishes) in the dishwasher. We all laugh but it happens alot as the day moves along.”
So… what else is new?
In the interim including Christmas and New Years, I had an MRI, weekly blood work and other health care appointments. For those of you who understand INR (my weekly blood work) I am not yet stabilized. Last week I was down to 1.4 whereas a few weeks ago I hit 3.9 (the “safe range” goal is between 2 – 3). The number refers to the number of seconds my blood takes to clot. Too short is a risk for blood clots and too long is a risk for internal bleeding.
At my MRI, I was told that we all have two major drainage veins from our brain, my hemorrhage was caused by a blockage on the left drain… the blockage is still there. I will have another MRI to see if it has cleared within six months, if not, I am advised that it will be unlikely to clear. I am not too worried about that as there is nothing anyone can do and I am still alive!!!  Anyway, there is still damage to the left side of my brain and my right side drainage vein is doing the work for both sides… (I will try to have the image scanned so you can see). The left side is entirely dark where the right side’s drainage is a lovely glowing white.   🙂
In addition to the medical side, we have had to cope with mortgage issues, banking challenges (by the way, our BMO advisor was an angel and has been helping us and advising us very well), employer paperwork, insurance updates, etc etc etc. None of this can be helped but it is a very draining process.
(I would also like to take this moment to thank my colleagues at Infrastructure Canada who sent me a most lovely gift basket with thoughtful treats. I miss you guys too!) 
*** there is a PS note below to others who will receive private notes ***
My incision from brain surgery has not yet entirely healed but my hair is growing in around the surgery area… in contrast, my anti-seizure medication is causing me to lose my hair so i have been lucky that it started off very thick. Time will tell… hope you would all still love me bald (although I am exaggerating and don’t think it will get to that point).
OK that’s all I can manage for today but I will do my best to get in here to see you all as often as possible.
Many hugs and kisses !!!
Silly time at my computer yields silly results

Jen

P.S. To the friends and loved ones who sent notes or cards or gifts, I will do my best to get back to you each individually in a private way… but for now, please know that it brings me to tears when I feel your love and support through this trying time. God Bless you all!