Proud to be a Canadian!

I don't ever recall being as proud to be a Canadian as I am today.  With 14 gold medals on home soil, Canada has broken the longstanding record for the most golds won at any Olympics.  And to top that, both Canadian women and men hockey teams winning gold.  An amazing overtime goal by Sydney Crosby this afternoon was just the icing on a multi -layered Olympic cake.  Sure, I didn't get to watch much of the coverage as I don't have cable or satellite, but the visit to my mum's this afternoon for the mens hockey final was more than worth it.  I have been able to stream most of the medal winning events during my lunch at work.  Unfortunately I can't stream much at home as the laptop is so old that it's like watching a really horrible slide show the audio.

I'm so proud of all of our athletes - not just those who mounted the podium, but all of them.  They are Olympians, and to be an Olympian on home soil must be a wonderful feeling.  From the surprise winners to the favorites going in, every athlete deserves the final celebration at the closing ceremonies.  The have done Canada and the world proud.

GO CANADA GO!

MRI results

The results are in from 2 of my 3 MRI - head and lumbar. 

HEAD - According to the radiologist the herniation of my cerebellar tonsils has minimally improved ?? How it has improved I have no idea!  Apparently it is 7.6mm and was 8mm. It all depends on who is reading the images. There is no hydrocephalus - yeah!! And they presume my arachnoid cyst is stable. Huh? You didn't look at it?  

LUMBAR - No visible abnormalities of the cord or conus. Good news!! There is minor disc space desiccation with an annular tear noted at L5/S1.  Basically my back is aging normally according to what I've read.

My family dr. did not explain any of the results to me because he only ordered the MRIs because I requested them as recommended by Dr. Heffez.  I'm sending both the reports and images to Dr. Gentili. Once I get the C-spine results I will also forward that report. Thank heavens for Wikipedia I was able to look up all of the vocabulary to understand what I was given.

So that is good news.  I don't have anything going on than was already known.  Just need the C-spine results to know for sure.

My dr. also prescribed me some Toradol.  Thank heavens.  Trying to manage headaches without any pain management has gotten old very quickly.  I had another headache Tuesday night through this morning.  I did have some Tramacet left from the sample the dr. gave me a while back.  I took it so I could get through last night and to the dr. today.  But it only helped for about 2 hours, made my legs and arms numb and I felt like crap.  And I had to take gravol (dramamine for my US friends) 4 times!  I left work early yesterday but I made it through today.  I started to feel better around 11.  Everyone cross you fingers that this half-decent feeling lasts through the weekend for a change.

Healing and Celebrating

It has been a week to heal and a week to celebrate.  I actually had a fairly good week. My head wasn't too bad, but I was still extremely tired.  And I had a number of appointments and errands and things which had me out of the house most of the week after work.

I went for tea with an old friend from high school who I've reconnected with in the last two years.  She is getting married in June and having her shag in March.  (for my foreign readers our "shag" is also known as a doe and buck or a dick and jane party, basically a social to make money for the couple's wedding).  I really hope that I'm up to going because I think it will be more fun than my high school reunion was. I will know a lot of people.  My friend and I had a wonderful visit.  She too is healing.  After being involved in a horrific car crash 2 years ago, in which she lost both her mom and her best friend, she has undergone several surgeries to repair damage to her shattered wrists.  She too is healing.  It was wonderful to talk to someone else who understands pain and managing it and the healing process and how long it can take.  I'm very fortunate to know her and I'm very happy we have been able to reconnect.

Friday at yoga I was the only participant so Mayama did a very special class with me.  She is fully aware of my restrictions because of the Chiari.  I was in a good deal of pain that afternoon so we worked on breathing and grounding techniques to try and reduce my pain and even make it disappear or explode.  We did a few poses, all very gentle.  We talked a lot about healing and positive energy.  She even did some therapeutic touch - wow. I left the class feeling very centered and relaxed.  Mayama even gave me a gift - an imagery cd.  I haven't had a chance to listen yet, but I'm looking forward to it.  I've written down most of the stuff in the back of my journal so I can use it now and after surgery.

This week also saw my grandparents celebrate their 60th wedding anniversary.  Theirs is a love and a marriage to admire.  60 years of good times and bad, sickness and health, richer and poorer.  And my grandparents have been literally through all of that.  I am blessed to be a part of their lives and blessed to see a marriage such as theirs.  My grandmother is more than just grandma, she is a very very good friend to me.  I often confide in her. We have a wonderful relationship.  They didn't want a big party or even a dinner out.  The family and two close friends got together at my brother's house last night for appetizers and cake.  It was very relaxed and very nice.  Again, my congratulations to them on their 60th anniversary.  If I make it that far I'll be 90!

I will finally get the results of my 1st MRI - brain - on Thursday. Once I have that I will forward it to Dr. Gentili. We did have an email back and forth this week.  I wanted to update him on my most recent hospital visit and find out where I was on the waiting list for April.  Dr. Gentili said I'm still on the list but doesn't have a date yet.  I'm keeping my fingers crossed that the MRIs show nothing more than we already know, but given my more and more advanced symptoms lately it is hard to say.

Reflections

I've been doing a lot of reflecting this weekend. I can't do much else. My Chiari had me in the hospital again yesterday so today is a rest, rest, and only rest day. And about 4 naps in the middle.  Thomas had to take me to emergency when he came home from the memorial pool tournament in honour of his dad yesterday night.  It was so bad I was curled in a ball on the floor bawling - I just hoped the dr. at emergency would give me something to help the pain.  Fortunately, the Torodol he tried worked.  Thank heavens for small favours.  I'm literally exhausted today, but at least I'm not in any pain.

I'm reflecting on how lucky I truly am. I got the most wonderful valentine's card from my dear husband - and it had the most beautiful message. It brought me to tears knowing how lucky I am to be his wife. Without him I couldn't make it through days like yesterday. Even though he hates taking me to the hospital he does. And he stays until the dr. sees me. He's very often my advocate because so many times I can't physically express what is going on because the pain is so bad. Yesterday was the worst yet - 8.5 / 10. At 9 I begin to lose consciousness - just to give you an idea.... Where was I... sorry I ramble on.

I'm reflecting on how lucky I am. My DH was called into work this afternoon. So I finally sat down and watched My Sister's Keeper. I cried a dozen times or more. But it reminded me of how lucky I am. I'm sick, but not that sick. I have my husband and family to support me. I don't take anything from my family but they all give willingly of the love, time and compassion. I will have my surgery in April or May and I will recover and I will get my quality of life back. It was a great movie to make me realize just how much I have to be truly thankful for.

Sometimes I believe it is important to realize how ill you are, but how well you are in perspective. We all battle daily with our own issues. But when you reflect on it I hope you realize, as I do, how fortunate we truly are.

On a side note, I did have a wonderful stretch of ten days or so before yesterday without a headache!! We went to Minneapolis last weekend, hung out with Kyle, went to the motorcycle show with Kyle, Mikey and Rosa.  We had such a good time.  I almost forgot about the Chiari.  Pity that feeling good couldn't last for two weekends in a row.

Tapped

I haven't had the energy to post... My head was horrible last weekend.  I spent half of Saturday and all of Sunday in major pain.  All I could do was keep my head wrapped in ice, it seemed the only thing that helped.  And going for a walk with Thomas in -20C temps.  I guess freezing my brain is my cure-all.  Days with 8/10 pain really tap my energy.  I ended up at the walk-in on Monday because I had intense jaw pain on the left side.  This on top of the headache and my newly acquired muscle spasms under my left eye.  Maybe it's all connected, maybe it's coincidental.  But the dr. at the walk-in said I have an inflamed jaw and prescribed Motrin.  My tummy does not like Motrin.  Grrrr....

I have appointment days for my lumbar and cervical spine MRI's.  February 10th and 18th.  Why a week apart, I don't know.  Those results along with the head MRI from a couple weeks ago will go to Dr. Gentili.  Hopefully there is nothing else wrong.  I don't think there is anything else.  But I know my symptoms are progressing.  My dearest husband sees me getting sicker and sicker. It's time to have surgery and get better.

We're off to Minneapolis for the motorcycle show tomorrow morning... Hopefully my head stays quiet this weekend.

On the Waiting List

I wrote my letter to Dr. Gentili, as I posted last week, and I sent it off on Monday.  I received an email from the Dr. on Wednesday that he's not certain he can get me in for surgery in April, but I'm on the list.  I let him know that I was having 3 MRIs and would send him the results...

3 MRI's - I know last post I only talked about 1.  The head MRI was ordered by the dr. on call at emerg.  I had that one today. On Monday I received a reply from Dr. Heffez about my MRI that I sent to him a couple weeks ago.  He recommended also having a cervical and lumbar spine MRI done to check for narrowing of the spine and tethered cord.  I happened to have an appointment with my GP on Tuesday so I had him order those 2 MRIs as well.  Dr. Heffez also gave me a more accurate estimated cost ~$61,000 for an assessment and surgery.  YIKES!! So far as I know I didn't win any lotteries and I don't think getting a second mortgage is a good option, especially should something unexpected happen and I'm in the hospital longer than anticipated or need more surgery than the decompression.  And I also don't think I could raise and save enough money in a short period of time to have the surgery as soon as I need it done.  And if I'm lying in a hospital in the US worrying about how much it is going to cost how will I concentrate on getting better.  No, I had made up my mind before I even received Dr. Heffez's email.  Toronto it is.

What else to report on?  The weeks just fly by lately.  I'm not really busy, but busy resting as much as possible.  I had a fairly good week, not a lot of headache pain.  I had my massage on Wednesday and my RMT found my tight muscles and tendons as always.  I went to yoga on Friday.  I didn't feel quite as relaxed after class as I did the first week, but we were doing some different movements.  I spent a good part of Saturday with my sister-in-law Jen at the mall doing our best to put a dent in the gift cards I received at Christmas.  Another 2 new sweaters, a long sleeved-t, 2 camis and a pair of yoga pants.  And I still have more shopping to do!  I'm going to be the best dressed person at work! Or at least one of them!  I love to look professional and having received gift cards for that purpose the last 2 Christmas' has really expanded my wardrobe.  A few little items, like a good white dress shirt, and I've got everything I need.

It rained today.  Yes, in Thunder Bay, in January, it was +3C and raining.  Which turned to freezing rain, then sleet / slush, and finally snow.  Very bizarre weather for January.  Tomorrow's drive will prove to be interesting.  Thank goodness I only have 5 km to travel.

Oh!! I nearly forgot!! I'm truly a blessed person.  My male boss came back to town on Monday for some Discoveries etc.  And he brought me a gift.  His wife made me a quilt!!! Just for me!! And it has frogs on it!

He asked my sister-in-law Rose what I liked, and she of course told him frogs.

So he had his wife make me the most beautiful quilt, he says, to help me stay warm while I'm recovering.  I was beyond touched.  I had to bite my cheek so I wouldn't cry.  For someone who has the reputation as being such a tough guy to work for, such a bear of a personality, I sure found the teddy bear within.  I would never in a million years expected something so beautiful, so thoughtful, so heartfelt from him.  I am blessed and humbled by his compassion.  I had a beautiful thank you card tucked away so I sent that off to his wife in Arizona to thank her, and him again too, for their support through all of this.  There aren't nearly enough people in the world like them.

Here's a close up of the froggies:

It really is a beautiful quilt!!  I've been telling everyone about it.  And the other night when I slept in the spare room (Thomas had a cold and kept sneezing in his sleep!) I put it on the bed extra to keep me warm.  I love it.  And I might just bring it with me to TO when I go for surgery.  Something to remind me of how lucky I really am.  I have such a wonderful family, great friends and fantastic bosses and colleagues.  Plus two whole other online families on the forums I belong to who are always there with prayers and support whenever I  need it.  One of the posters on one forum shared this poem with the group when I put out a plea for hugs last week.   It says it all.

THE FRIEND WHO JUST STANDS BY
B. Y. Williams

When trouble comes your soul to try
You love the friend who just “stands by”.
Perhaps there’s nothing that he can do -
The thing is strictly up to you;
For there are troubles all your own,
And paths the soul must tread alone;
Times when love cannot smooth the road
Nor friendship lift the heavy load,
But just to know you have a friend
Who will “stand by” until the end,
Whose sympathy through all endures,
Whose warm handclasp is always yours -
It helps, someway, to pull you through,
Although there’s nothing that he can do.
And so with fervent heart you cry’
“God bless the friend who just ‘stands by’!”

Decided

It's been a tough week, again.  Headaches on the scale of  9/10 on Wednesday and Thursday.  A trip to emergency with at CT scan and I'm being scheduled for an outpatient MRI too.  It's been rough.

Too much stress or exercise or a combination of the two triggered a major headache after feeling good for a whole day.  Sheesh.  I had a stressful day a work on Wednesday and knew it - I could feel it in my shoulders.  I went for a long walk that evening - it was beautiful -4C in January is rare!  And once I got home I just felt the pain settle in over my head and shoulders and start to pound.  I took a Maxalt before wrapping my head in ice and going to bed.  But I was up 4 times during the night getting ice and taking more Maxalt at 6am.... nothing helped.

Thursday morning I had no pain.  But I was really dizzy and lightheaded.  I felt I could drop at any time.  I was at work, sitting down to photocopy and I knew I couldn't take it or continue.  I called hubby to take me to emerg.  I was in quickly and the nurse and resident I saw actually had a basic knowledge of Chiari.  The resident wanted to consult with a NS for his opinion.  And he actually returned her call!!  He wanted a CT and MRI done to check for hydrocephalus and to see if my CSF was being blocked.  I was able to have the CT right then but our MRI is so busy that I'm on a short waiting list.  I should have it within the week.  While I was there the pain started again, getting worse and worse.  They offered me Maxeran - which I'm now told I have adverse reactions to (anger and agression) so that was a no-go.  They offered gravol, but I wasn't nauseated so I didn't see the point of an IV for gravol.  So I got ice.  That's it.  The CT showed no hydro, so the resident said I could go home.  If I don't hear from the MRI department by Thursday I'm to call there.  The nurse at emerg did call on Friday asking a few questions before my MRI requisition could go over so at least I know that it is on it's way.

I stayed home from work on Friday.  I felt a little better, not dizzy at least.  Just pressure, lots of pressure in my head.  Especially when I went from sitting to standing or lying to sitting.  Lots of ice, rest and hydration.  I also drafted my letter to Dr. Gentili to ask him to book the decompression surgery.  I'm hoping for sometime in April.  I cannot continue life in this pattern.  The month of January I have only had 2 good days - today is the 17th.  That means I've had 15 poor to really bad days.  And my headaches are not going away with the Maxalt.  When it takes over a week to feel better something just isn't right.  I want to get better.  I need to get better.  I can't forsee the next 50 years of my expected lifespan spent on the couch with ice packs, or holed up in my bed in the dark trying to breath through the pain.  I've made up my mind I deserve much more.  I don't want to miss out on life for the rest of my life.  So, hopefully, surgery will improve my quality of life.  It has not been an easy decision at all.  Lots of research, contemplation, conversations with family, and more research. 

Brain surgery is not to be taken lightly, and I'm not taking it lightly.  I look forward to being a Chiari surgery survivor - 2010.