Thursday 20 January 2011

A New Year and a return to the keyboard

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!

4 comments:

  1. By the way, that was a 1.5 hour posting... takes me a long time to be able to write a message (but I am NOT giving up)!

    I am a stubborn old cow and I will write until God makes me stop! (please don't complain to Him, I expect He's busy)...

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  2. That was a long post - it would have probably taken me 2.5 hours!
    Don't ever give up - you are amazing and a true inspiration.
    Love you,
    Francine

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  3. Jen, I am so glad you have started writing your blog again. Hopefully things will continue to progress in a positive manner. We miss you so much and send lots of hugs and prayers your way!

    Elizabeth

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  4. Thanks for sharing your remarkable story, Jen. Chris and I are always thinking of you and the family and what strength you bring to them (and they to you). We miss your company but hope we can get together with you before our departure in late July. Take care of yourself,

    Alison & Chris

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