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....

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!!!!!

Another week passes

Well, the two day headache made itself into a four day one last week.  On Monday I had a regular visit to my family doctor for my regular prescription refills and one new one.  He decided to try me on Tramacet for the headache pain as regular Tylonel and Maxalt have no effect on Chiari headaches. We also discussed my surgical options at Toronto Western and he is confident the TWH is the best place to have surgery.

Monday night as my headache raged, I took 2 Tramacet.  Warning: Do not take this drug if you need to perform any of the following: drive, walk, talk, think, speak or move!! WOW!  I was sitting on the couch waiting for it to kick in, but it had already kicked in.  I wanted a drink from my glass not a foot away on the side table but I thought if I moved my arms they would fall off.  Yeah, it's strong.  But it did help the pain.  And Tuesday I felt hung over, but I didn't have any pain.  Not a bad day, all in all.  Next time, I'll only take 1 though and see if that is enough.

So where am I at in my decision about surgery?  I've decided I want the decompression surgery.  I've had to give up more and more activities lately because doing them causes terrible headaches.  Now, I'm trying to decide if I want to have it done in Toronto by Dr. Gentili.  I'm weighing all of the information I have carefully.  And I'm investigating one more option: the US.

I've read about and contact the Wisconsin Chiari Center in Milwaukee, WI.  I know the costs would be well more than we can afford without winning the lottery, but I had to inquire.  They were very nice and wrote back to me to send down my MRI and reports and they would review them and let me know if I need more testing. They ballparked a surgery cost too - $75k to $100k US.  Anybody have some extra pocket money lying around??  I will apply to OHIP for preapproval to see if I was to go to the US if they would cover any of the costs.  I see my family Dr. on Thursday to see if he will agree to sign the request.  Wish me luck.  IF I'm preapproved I would like to at least have the opinion of a true Chiari specialist - Dr. Dan Heffez - who coincidentally trained in Montreal.

I had to make a tough decision this week as well.  I had to give my notice at the pool.  Just teaching the one aquabics class a week leaves me with a headache for anywhere from 1 to 4 days.  It's just not worth it for the 45 minutes and $19.  When I'm better, after surgery and recovery, I would love to go back to teaching.  It has been a big part of my life - taking it for the past 14 years and teaching the past year.  I am still going to yoga on Sunday mornings until Christmas - it's free with a donation to Christmas Cheer and they are all easy, beginner classes.

So, time, a little more of it, will tell what OHIP says, and whether or not I can pursue going to Milwaukee for a consult.