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.

The Chiarian's Creed

I promise to accept the fact that I have Chiari Malformation, a neurological disorder which will limit my abilities in my everyday life.

While I will always have Chiari, some days will be good and some days will be bad. I will be thankful for the good days and try to make the most of them.

When I am having a bad day, I will try to remember that most likely it will not last.

When I am having a bad day, I will listen to my body, and get the rest that I need. I will let my family know that I am not feeling well, because they cannot read my mind.

I will not feel guilty about resting, because I will eventually begin to feel better, and in the long run, it will also benefit my family. They will not become malnourished if they eat peanut butter and jelly sandwiches for dinner.

I will not feel guilty or worry about the work that is not getting done while I am resting. The world will not all apart without me, even though it looks like it already has.

I will not let anyone else make me feel guilty for taking time out for myself. They will never understand exactly what I am experiencing, the pain that I feel, the exhaustion that I feel. They will never understand the fear that I feel when my symptoms creep up on me, and land me flat on my back.

I promise not to feel sorry for myself when I am feeling bad, because there are a lot of people out there who are in worse shape than I am. I will not be sorry for what I don’t have, but be thankful for what I do have.

I promise to learn a lesson from my illness, which is not to take life for granted. I will enjoy every moment that was given to me, and be thankful for the times that I can smile and laugh.

I will try to help others who also suffer from my condition. There are many confused and frightened people who need to hear comforting words from someone who has been there. There are many people who need me to take his or her hand and be pointed in the right direction.

Lastly, I will not ask, “Why me?” While Chiari has weakened my physical body, it has strengthened my heart,
my soul, and my spirit.

Written by: Sheila Reilly

Denied

It was to be expected, but I'm still disappointed that OHIP denied my application to travel to Wisconsin Chiari Institute for an assessment and possibly treatment. 

I wasn't mad at the denial.  I was mad at the Ministry of Health personnel who can't type.  The letter was sent out December 22nd.  I got it on January 5th.  Why?  Because people at the Ministry can't type.  My address was wrong so the envelope sat in the Purolator terminal waiting to be redirected from December 24th to January 4th.  I know there were holidays in the middle, but that is ridiculous.  Not to mention the fact that should I wanted to appeal their decision, the 15 day time limit had passed!  I have no desire to appeal the decision.  According to the Ministry I'm at no risk of tissue death or death itself, and as I have no notes from doctors saying anything to support my case, I do not believe that spending money on a lawyer to represent me at a hearing before the board would be prudent.  Better to save my money for a rainy day.

Besides the denial letter dampening my mood, the 5 day killer headache also kept me pretty low key through the New Year and the start of this week.  Yesterday peaked at a 8/10 through most of the work day... I got to the point where I wanted to go home but I couldn't see straight to drive, so I stayed at work.  My headache eased off a bit at lunch and I made it through the rest of the day.

My 5 days of pain were my own fault.  I felt pretty good on Saturday so I did too much - I am responsible for my own undoing.  Housework and undecorating the tree without taking those newly necessary little breaks...  Dumb. Dumb.  Dumb.

Mum, Eugene and I did go see the Olympic torch go through town on Sunday night.  They were handing out flags, so I stuck my arm out.  The flag person passed me by, but the next thing I knew there was a little Coke bottle in my hand!! It's a torch relay exclusive bottle.  It made my night!!

Even knowing that I'm not covered to go to WCI, I still sent off my MRI to Dr. Heffez for his opinion of my MRI.  I also asked him for the cost of the assessment there.  If it is affordable enough I might consider going, just to have all of the tests done that I should.  I did also ask what other tests should be done, and maybe I could have them done here instead.

So, I have a decision to make I guess.  The more I consider my options the more difficult I find my decision.  If I do chose Dr. Gentili, am I in the best care?  I know there are amazing neurosurgeons at Toronto Western.  I'm just scared.  What happens if they open up my head and find more than they were expecting?  What if it is worse and they can't do anything?  Do they just stitch me back up and send me on my merry way to try and find someone who can help?  Or do they "try their best" and leave me worse off than I already am?

I know in my heart I want and need the surgery done as I cannot continue to live with ice packs wrapped around my head 4 or 5 times a day.  I cannot continue to miss work and activities and having to limit what I would normally do.  I'm not ready to give in that easily.

Time to think....

Merry Christmas to All!

It's Christmas day!!  It was a wonderful day.  It was a quiet day, relatively speaking.  We were greeted with about 12cm of snow on Christmas Eve, so hubby worked late and then went in from 2 am to 3 pm, and with more snow today, he's back in at 2 am tomorrow morning.  It's the first time I've ever spent the majority of Christmas day by myself.  I accomplished a fair bit - 4 loads of laundry, dishes, I baked meringue cookies and cleaned the bathroom.  Hubby stopped home once around 10 am to pick up some coffee and a bagel.  Being Christmas the only thing open is Mac's corner stores.

Hubby was home around 3:30 and we opened our presents to each other.  I got him a shop vac, at his request, 2 DVDs, some chocolate truffels and his Stitch ornament that I actually picked up in Toronto last month.  He got me cookie cooling racks - beautiful ones!!, two pair of flannel jammies - my request, an electric can opener - another request, CSI season 8, my favorite Lindor mint chocolates and White Christmas on DVD. 

We went to dinner at hubby's mom's - our first year without dad.  I teared up a bit, but held my composure until we came home.  We both got spoiled rotten by our family, yet again.  I have enough gift cards for a shopping spree at the mall with my dear sister in law Jenn.  Plus a fantastic new "parts sorter" in which I can put all of my beads.  Hurray!!!  (I still am not quite done sorting them !!)

So I'm snuggled on the couch with my blanket, my ice pack, and White Christmas on the TV.  Hubby is asleep.  It's another busy day with dinner at my grandparent's tomorrow.  I'm making a small ham and mashed potatoes.  I love being together with my families on Christmas, or anytime for that matter.

I'm not ready. Are you?

I'm trying, really I am, but I'm not succeeding very well in getting ready for Christmas this year.  I've made 1 pan of Nanaimo bars and some peanut butter krispie squares (marshmallow free).  I still have plans for butter tarts, a Nanaimo for my grandparents, ginger cookies - because what's Christmas without ginger cookies! and shortbread.  I also bought almonds to make biscotti, but I think those will just have to wait until the New Year.

The tree is up and it has lights, thanks to the help of my husband. I went through 1 tote of the 3 full of decorations so far.  It's taking me 4 days to decorate a 5' tree; I don't care.  I'm minimizing the decorating this year.  Just don't have all of it in me.   Oh, and I hung the lighted tree and candy cane in the window - 1 whole suction cup each!

The good news is I am done shopping.  Unless we run out of milk, I don't have to set foot in a retail or grocery store until after the holiday.  I even wrapped hubby's big present on Tuesday.  I kinda had to, I couldn't hide it anywhere!  I put it downstairs under a blanket while we had dinner that night and then quickly wrapped it to prevent someone from peeking.

Dinners.  Plural.  Could have been 3, but 2 conflicted.  Christmas day will be at my mother-in-law's; it's our first Christmas without dad and it's already hard.  I hope for a good day.  I'm responsible for dessert - so Death by Chocolate it is.  It's a favorite.  And no one has ever noticed I make it with soy milk!!  Ha haha!! What they don't know won't hurt them.  Dinner #2 is Boxing Day with my family at my grandparents.  This year I get to do a small ham and potatoes.  And my mum has sent an email to the family that the men get to do dishes... we'll see how that one works out.  Oh well, I don't mind dishes as long as I have rubber gloves on.

We went to my staff party last Friday - it was very good.  The food, the conversations, the skit put on by one of the partners and some of the staff - it was all good.  I didn't drink, well I don't drink much anyways, but I felt like I had the most miserable hang over on Saturday.  I think it was just being out, late, and not being accustomed  to it.  My head pounded all weekend.  Saturday night I ended up taking Tramacet before bed.  Then I didn't sleep well.  That drug does wierd stuff to me.  I feel like my arms and legs won't move.  It's very disconcerting.  Sunday was not much better.  I had to basically just sit on the couch with an ice pack behind my head until after lunch.  I couldn't move.  I went downstairs to do laundry and I thought I'd never make it back upstairs.  The rest of the week was a little better, no major headaches, but lots of pressure.

And on a good note, my doctor finally completed the OHIP pre-approval forms and they have been sent off to see if I can get coverage to travel to WCC for an assessment at least if not the surgery.  I should hear after Christmas.  Keep your fingers crossed!!

Snow, craft show and beads!

We had our first snowfall on Tuesday.  I didn't test out how my neck and head would feel shoveling - hubby had the driveway done before I got home.  It was nice to see the snow.  It's been so grey and dreary, the white at least brightens things up!

It was a busy week.  I was called to teach at the pool on Tuesday as well as my regular Thursday class.  Only 1 week left until Christmas break.  My last class will be the 10th.  I'm sad to say good-bye to teaching, but I know I can't continue to teach and end up with 4 day long headaches because of it.

I took Friday off work as Friday and Saturday were the annual craft show at West Thunder Community Centre and I have had a table there for the last 4 years. Thought it was 5, but I remembered now that it was 5 years ago I started at 55 Plus.  I didn't do the 55 Plus show this year.  Here's a pic of my table this year.

So today was getting back to normal.  Just before I went to gentle Yin yoga this morning I started to find the kitchen table which has been buried beneath boxes of beads, wire, pliers, ribbon and glue for over a month.  On one of my trips downstairs with a load of stuff my bead box was balanced on top of the pile.  It's an old bead box - I know my mum gave it to me when she stopped beading and I remember it from very early in my childhood.  It has 12 drawers with up to 3 dividers in each.  12 drawers that don't latch shut. Each drawer is about 3" x 8" x 1.5" deep.  12 free sliding drawers hold a lot of beads.  10's of 1,000's you might say...  And you would know it hold's 10's of 1,000's of beads when you drop your bead box in the spare room in the basement, upside-down and all but 2 drawers fall out.  I let out a  loud ARGH!!!  and hubby asked what was wrong.  I told him I dropped the bead box.  He had to come look.  I should have taken a picture, but didn't.  I grabbed the dust pan and a broom and started rolling everything together.  I had a few minutes to shoveled the some of beads into a shoe box.  I had to leave it to go off to yoga.  And here is the box after I finished finding as many as I could...

The vacuum found most of the rest, and I'm sure there will be more underfoot when we move the Christmas totes out next week.  Guess who will be sorting beads into Ziploc bags instead of her bead box....

Hubby is nearly done the casing and baseboard in the spare room upstairs so we can move the furniture back in and set up the Christmas tree in the front hall.  I have tomorrow off work so I hope to get either peanut butter squares or nanaimo bars made at the least, and the rest of the kitchen tidied up.  Plus I have massage therapy at 3:00.

I also saw my family dr. this week to send a pre-approval form to OHIP to hopefully cover the cost of surgery at Wisconsin Chiari Center.  Hopefully he sends it out soon and I hear from OHIP before Christmas holidays. Cross your fingers, your toes, even your eyes!!!  I'm only $98,475 away from the $10k!

And, get this, I have only had 1 headache in the past 12 days!!!! Hurray!!!!!