14 days to go!

I was quite annoyed on Sunday.  During my soak in the tub I mentally composed what I thought was a great blog post.  After my bath I grabbed my MacBook and settled in to type it out.  Click publish post.... "blog server is currently performing maintenance.  Please try your post again later!" After I spent 45 minutes typing! And it deleted it.  I couldn't even go to the backup draft!  So, aggravated, I ignored my blog for a couple days and hope the server is up and running properly tonight when I press publish!

I was all set to write about last week.  It was a busy week. I've been more "ditzy" than normal (remember, natural blonde, not dyed) and I think it has a lot to do with the pressure in my head.  I feel like my head is really wobbly and heavy.  I have real balance issues when I bend over to pick up something or tie my shoes.  Even just sitting on the couch I feel like my head will bobble over at any time and I will land on the floor.  Plus my legs are numb lots.  It's unsettling.  Not pins and needles, but uncomfortable.  And with a wobbly head my stomach follows.  Yech.  I feel terrible quite often, but often it only lasts for 5 or 10 minutes.  But it's 5 or 10 times a day.  Like having a 5 minute flash of oh my gosh hot, stomach cramps, nausea followed by icy chills....  Surgery I hope will resolve some of this!! 

Thursday was our 4th wedding anniversary and 12th year together and I spent most of it in bed.  Now, get your mind out of the gutter..... When I woke up and looked at the clock in the kitchen there were 4 sets of numbers.  Not a very good idea to drive to work when you're seeing in quadruple!  But I wasn't in any pain.  So, back to bed, ice and Advil.... Woke up a little while later and it was worse and my head was ready to EXPLODE!! Definitely not going to make it to work in such a state so I call in again to say I wouldn't be in at all.  Often if my eyes go funny there is no pain and an hour or so later I'm fine.  Not this time.  And not the last few times.  Now the visual disturbances are accompanied by mind splitting PAIN!  Easily an 8 / 10 on Thursday.

I also had my pre-op appointment on Thursday.  All is well.  I'm never going to die of high blood pressure with my average of 100/60.  (normal is 120/80).  My doctor signed my health travel grant and my pre-admission forms.  Now once I'm back I will have to see him again to fill in my disability certificate for work.  He said he would remove my staples if I am back in Thunder Bay by that time.  I think I'll go to the walk-in though.  My doctor is in his 80's and doesn't have the steadiest hand!!  Don't want to hear any opp'ses (just how do you spell that?) when he's at the back of my just healing skull!

I could see when I got up on Friday but was still hurting.  But I had obligations I had to meet at work, so off to the office I went.  I had every intention of leaving after the morning meeting was over.... I got home at 5:15.  Yeah, once I'm there, it's hard to leave.

We're all set with travel and accommodations in Toronto.  My wonderful cousin has offered to pick us up from the airport and we'll have dinner together.  She is also giving us keys to their condo (just 4km from the hospital) so we have somewhere to stay once we run out of hotel on Friday morning.  With the G20 summit the week of my surgery it is insane trying to find somewhere to stay near the hospital for under $190 / night!  And my cousin and her husband are leaving the city before the summit to go to the cottage.  We're all set!  Toronto Western here I come!!

So I have 8 days left at work.  I'm not being given any new files.  I'm finishing up training my replacement and tidying up all of my filing, purging files, and making sure nothing is left to do.  Next week the department I work for is all going for lunch to "celebrate" my surgery.  Or mourn my departure!! My female boss is already missing me and I'm not gone yet!

[I just had to go back and remove the word so from the start of 3 out of the 4 paragraphs I used it to start.  Somebody sign me up for a writing class!]

With just 2 weeks until my surgery I have started to pack a little.  Things like my neck pillow, scarfs, baby shampoo and gravol (dramamine) are all ready to go.  Just deciding on what luggage to take.  I think we will pack in 1 suitcase so hubby only has to manage 1 on the trip home.  I'll take a travel bag with me for my stuff I'll need at the hospital.  Won't need much.  I'll barely have any hair so a tiny bottle of shampoo, tooth brush and paste, pyjamas, slippers and a box of peppermint tea.  I'll consult with the admissions clerk about my 101 things I can't eat, so we might have to find a little grocery store for a few snacks on Monday afternoon to bring to the hospital.  I'll probably stash baby cookies and 100 calorie packs in our luggage for the trip down too.

So, I can't remember a thing I was going to write Sunday, but I think I have updated all the same!!

The List

1.  You can't hold onto anything - dropping toothbrush, hair brush, stapler, iPod, fork, etc.

2.  Standing with pressure on one leg or the other makes it goes numb

3.  Ice pick pain in my left temple

4.  Reaching up to brush my hair makes me see stars

5.  Typing the number 6,000 makes me go cross-eyed

6.  No point in eating breakfast... it's not going to stay put

7. A ton of pressure in the left side of my head behind my ear

8.  Turning a corner while walking down the hall makes me dizzy

9.  Dinner consisted of mashes potatoes and gravol (dramamine for my US friends)

10.  Shaving my legs is impossible without resting my head and hip against the wall so I don't fall down in the shower

11.  My ears are ringing so loud they drown out most everything else

12.  There's not enough ice in the freezer

13.  There is so much pressure at the back of my skull it feels like someone has reached into my skull and is pulling it downwards...

14.  My eyes want to pop out of my head

If you can relate to the symptoms I felt today, you know it's not been a good day.  If you're feeling the same, I totally sympathize.

Who Could Ask for More?

Certainly not me.  I'm back online! Hurray!  And I'm typing my blog on my brand spanky new Mac Book Pro.... I'm in love with my little 13" aluminum friend.  I haven't been able to blog since our old laptop began it's new life as a doorstop.

So, I guess I should bring the last couple weeks up to date and then drool over my new laptop later. I still have no surgery date.  Last week Dr. Gentili finally replied to my 3rd email requesting an update as to where I am on the surgery list.  But his update wasn't much.  They won't be booking until the last week or two of May for June surgeries.  And he "hopes" I will be on the June list.  Gees I "hope" I'm on the June list too!! If he pushes me back that will be more than 6 months wait for surgery since I decided to book it. So I am going to wait until the end of this week or even after May long to call again and see if I'm on the list.  Please, please, please let me be on the list!

I've had some good and some bad days.  Nothing lasting days and days, but the dreaded Chiari headaches have increased in their appearances again lately.  And unfortunately I know exactly why - STRESS!!!  Stress at work training my temporary replacement - which is going very well.  And it's been crazy busy at work, so that doesn't help.  Short lunches, staying late, training and still trying to do all of my work - I burnt out.  So I did take Friday and Monday off so that I'd have a 4 day weekend to relax. 

Relax??? Hahahahahahahaha!! That was a good plan, but it's not happening. My grandma is still in the hospital but was transferred to the rehab hospital to regain her strength and hopefully go home in a couple of weeks.  So I spent a couple hours each day up there visiting with her and papa.  And then of course there's the usual errands to run.  Plus it was my birthday Saturday and we had the family over for cake and coffee.  So before the family visited hubby and I had to clean house.  I had started on the bathroom - just the toilet and sink - when hubby came home and took over :) So I vacuumed, changed the bed, did some laundry and cleaned up the kitchen instead.  So much for relaxing...

Cake and coffee with family is always a really good time.  And being my birthday presents were involved.  I got some amethyst earrings and a ring from my mother-in-law, money from my grandparents, roses, garden stuff and two gorgeous glass pendant necklaces from mum, and from the hubby (who has now accrued some mega brownie points) Out of Africa (a favourite of mine) on Blu-ray and the piece de resistance...... a 13" Mac Book Pro.  We've been laptop shopping for some time and I've been ogling a Mac for ages and ages and now I finally own one!!!  I'm quite spoiled my grandma says, but I'm not spoiled rotten.  Once  I have a chance to figure out more like the photo aps etc I will post some pictures of my jewellery.  There is a lot to learn on a Mac - hubby and I are old Windows people... trying to convert.

Today we spent the morning setting up the laptop and trying to link my iPod.  And we discovered the wonderful trick of Apple not allowing a backwards transfer of your music from the iPod to iTunes...  Grrrr.... So to download the 1000+ songs on my iPod need to be redownloaded or I have to find some software to reverse download them.  Learning new stuff all the time!  After a long visit with grandma and papa I came home and went outside.  I managed to shuffle 2 of my planters around to plant some onion seeds, and two hanging baskets with basil and lettuce.  That was more than enough gardening me for one day.  Everything is harder this year.  The planters are heavier it seems.  The tools are too high on the shelf to reach.  The ground was too low to work from with the planters so I got a little stool.  The soil was too hard when I turned it, but it had to be turned after the winter...  I guess I won't be doing a lot of gardening this summer.... We also went for a 2 mile walk tonight, having skipped last night to have the family over.

I still have tomorrow off with plans to see the dentist for a cleaning at noon, a visit to see grandma, and hopefully I'll just sit on my duff and do nothing for a good part of the day.  Here's hoping.

So goodnight my loyal readers, thank you for hanging in during my technical difficulties.  I'm going to finish watching the rest of Out of Africa...

Pushed Back - Again

I don't even have the words to express how I feel right now.  I called Dr. Gentili's office on April 20th to make sure I am a priority on the May surgery booking list.  Dr. Gentili and I had an e-mail back and forth before that how I didn't make the cut for the April bookings and I was now priority for May. 

I hadn't heard anything so I called and left a voicemail with his office this morning.  His receptionist called me at work to tell me that I wasn't on the May list.  I'm gutted.  I have no emotions left.  I'm sitting here (at work on my lunch break) with tears in my eyes.  I can't stop the tears.  I am disappointed.  I'm dispondent.  I don't care about anything.  It's depressing to think I have to wait another 30 days to find out if I'll make the June list.  I asked the receptionist about the delay and she said there were patients waiting a long time to have surgery.  To which I replied I wrote to Dr. Gentili on January 16th to go ahead and book me.  She only replied "oh, I'll have to speak to him". 

I just want my date.  I don't care if it's a month from now, but can't they look ahead at their schedule and go - hey, [insert date] is open, stick Ms. Elvish in and let her know! But no.  Nothing. Nada. Zip.  Not gonna happen.  They are going to leave me waiting and waiting and waiting while my symptoms progress and my life waits on hold.  I have no quality of life.  I work, walk and go to yoga.  I can't do housework or yard work, carry laundy, go for groceries or do much without triggering a headache.  And that includes crying.  So, now I have a headache to top off my wonderful phone call this morning... great.

I might e-mail Dr. Gentili later, once I've thought this through, and ask if there is anyone else in Toronto Western who he would be comfortable to refer me to that would be able to do the surgery soon than he can.

I've reached despiration....

More on Reiki and other healing techniques

One of my followers asked what is Reiki.  It's calm, it's healing, it's known as palm healing therapy.  It's best described as the channeling of energy through the body to heal, reduce pain and inflammation.  I had another session yesterday.  The practitioner, who is a gold level Master Reiki practitioner, said it was a good session.  I was so relaxed I even fell asleep a couple of times.  This apparently is a good thing - the more you are relaxed the better your energy can flow through you.  And I can, at times, feel the energy flowing through my arms or legs.  It's almost like a small electrical current runs through my body.  For more on Reiki, here's a link to Wiki.

http://en.wikipedia.org/wiki/Reiki

There is a client at work who also practices a lot of natural healing methods.  She brought me some wild rose oil and demonstrated 3 methods of releasing tension and pain from headaches.  I'm all for managing without pain killers.  Tonight I've tried a couple of different things as my head is aching.  Pinch the skin between your thumb and index finger with your opposite hand.  Hold it for 5 seconds and switch hands.  The other is to place your fingers flat on your forehead - elbows out.  Drag your fingers from the center of your forehead out past your temples.  Move your fingers up a little (an inch) and do this again.  Continue up the forehead, over the skull with each pass, taking about 6 passes.  Both techniques are meant to help tension and pressure headaches.

While I'm here, what else can I update you on?  I heard from Dr. Gentili on Monday - he will be booking surgeries for April sometime next week.  So I should have a date soon.  I met a friend on-line who underwent the decompression recently.  She said it was like being hit by a truck for the first few days, but she's feeling better now.  That is good news.  If everything goes as expected, I know I can manage a few days of pain.  I manage that now.

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.

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.

Perspective

This morning there was another heavy frost.  As the sun came up through the trees they glistened like Christmas ornaments.  It was beautiful.  But the sunlight on my face brought me back to the painful reality of another Chiari headache, now day two.

I'm trying to put everything into perspective.  How much my headaches are affecting my life, how much work or activities I miss, and whether or not the headache was brought on by exertion.  I went through my journals from 2006 through now.  There were 38 months worth of entries.  A good starting point.  So I averaged everything out.

Over the course of 38 months, I average 7.6 days of the month with a headache.  I missed 1.5 days of work or activities per month.  And exertion is a cause of at least 1 - 2 headaches a month....  And those exertion caused headaches may last several of those days.

So, in perspective, I average over a week out of every four in pain over a 3 on the pain scale.  Now, don't get me wrong, that's far better than a lot of people that I've met or read about.  But when I have a headache the pain is bad enough to wish for the surgery.  And when I don't have a headache, I don't want to have the surgery because of the risks involved.

I've faxed a few further questions to Dr. Gentili's office to get a few more answers I need to make my final decision.  I've had some interesting feedback about surgery in Canada vs the US.  I've also e-mailed another doctor to inquire about an assessment in the US.  This is very very very preliminary.  I'm information gathering still.  

I'm still researching and thinking...

48 hours of pain

OMG I haven't felt pain like the past 2 days in years.  And I've never had a headache like this.

It started on Monday, I felt weak and tired and on the verge of fainting or collapsing at work so I left at 3:30.  I came home and lay down for an hour or so, and when I got up just around five, my head was positively throbbing.  I'm talking 8 or 9 out of 10.  I took a Maxalt right away and thought I'd be fine as it usually works within an hour or so.... Right?

Wrong...  I couldn't eat dinner.  I couldn't even think about food.  Hubby fended for himself with some soup.  I had Gatorade and arrowroot cookies. I went back to bed around 8:30 and the pain was so bad I was bawling.  Not "there's tears in my eyes" but "I can't control the tears streaming down my cheeks" pain.  And I didn't want to cry because it doesn't help, usually just makes it worse.

I was up and down all night.  Changing ice packs every two hours.  A gravol to settle my stomache.  And more Maxalt at 3 am.  My head didn't hurt in the front above my eyes or in back around the spine it hurt ALL OVER!  An overinflated balloon on the verge of exploding.  Well by 7 am when my alarm went off I knew there would be no way I could go into work. So I called the HR department and left my boss a voicemail and changed my voicemail and crawled, almost literally, back to bed after calling hubby to say I would be staying home.

I don't know if I slept.  I remember getting a fresh ice pack a couple of times before 11:30 when I called hubby to stop off at Walmart on his way home from work.  I needed another ice pack to add to the rotation and more Gatorade.   I wasn't eating anything so I was at least trying to stay hydrated.  Hubby came home and we threw the now third in our collection of ice packs into the freezer.  I grabbed a movie and an ice pack and snuggled into our bed and half watched, half dozed through Memoirs of a Geisha.  I didn't care if I watched or slept.  It was just on to distract my mind from the incessant pain.

My mum called, or I called her, I can't remember, about going to aquabics - that'd be a no.  She told me to go back to bed and call her in a while. I took a third Maxalt in 24 hours (the maximum recommended) and lay down again until hubby came to bed around 8.  I got up realizing I was kinda hungry.... Hmmm.... what to eat?   Back to arrowroot cookies and more Gatorade.  It is the only thing I could imagine stomaching.  I called my mum and we discussed whether or not I should go to emerg for some iv drugs.  I didn't want to go anywhere.  Especially with our hospital on high screening for H1N1.  I didn't want anyone else's germs.  So back to bed with a fresh ice pack I went.

When I got up this morning, now 37 hours from the onset of my headache, it still raged.  I had to have a shower.  I nearly passed out doing so, but after a few minutes I felt level headed enough to make a decision not to drive to work.  I called my sister in law and caught her as she headed out the door.  We luckily live 6 blocks away from each other and work for the same law firm.  She picked me up and off to work I went.  I arranged with hubby to pick me up at noon; I knew I'd never make the full day with all the pain.

People who haven't experienced chronic pain don't understand what you're dealing with when you tell them you've had a headache for 2 days straight.  Not, oh gee, my head's aching either.  I'm talking my head is going to explode if anyone whispers too loudly or if there's a blink of light in the room.  People at work are nice enough, but they just can't comprehend the effort it took me to not just stay in bed again today.  I went in and did what was important and necessary.  I feel very responsible for my duties at work and I'm not trying to shriek them.  Hubby collected me at noon and I came home, had some toast!! (not just arrowroot cookies) and crashed for another hour or so.

By the time supper rolled around I felt alright enough to have some chicken noodle soup and boiled some pasta for hubby.  My head has finally eased to about a 2 / 10 and I can actually say that I feel marginally better.  But after the last 48 hours, any less pain is a vast improvement.

The Struggle for Balance Continues

I'm trying to find between doing and not over doing it.  If I do a little extra, I end up with a headache...

I taught aquabics twice last week, plus went bowling on Friday and spent most of Saturday snuggled in bed with ice packs. The Maxalt only helps sometimes, not all.  If it doesn't help in the first two hours, it's not going to.  So the only solution is ice packs and a dark room.

This last few weeks has been worse than usual.  I think the combination of stress and fatigue has made my headaches more frequent and more intense.

I'm so looking forward to seeing Dr. Gentili on November 5th.  I just can't wait to know what his opinion is.  Will he have the same mindset at Dr. Haq - surgery, sooner than later? Will he even treat Chiari? Or refer me to someone else? Are there more tests needed?  Am I imagining all this pain?  Like some have said - is it just all in my head?  I have a list of 20 - 25 questions for him, and I'm not optimistic that he'll take the time to answer all of them, but I'm hoping he will.  I'm just looking forward to having answers so maybe I can figure out the next step.

Appointment Postponed

Received a phone message today from Dr. Gentili's office at Toronto Western.  My appointment has been moved from October 26 to November 5th.  Apparently the Dr. cannot see patients on the 26th.

I left my work number for the receptionist and she did call me back this afternoon.  I'm booked for a 10:30 appointment, still giving us plenty of time to get into Toronto.  Then I had to call Porter tonight and change the flights - $50 fee, per person, per flight! Yeouch!!  At least there is a seat sale which ate up 1/2 of that.

Now I have to go back to my family dr. and get him to resign another Travel Grant as he already signed and dated the one for October 26th.  Oh well.  Needed to go back for the end of the month for prescription refills anyway.

Not much else to report.  I had a headache this morning, but thankfully the Maxalt kicked it.  The back of my head was still sore and my neck was tender, but it was more manageable.  Taught aquabics tonight - only 4 ladies, including my mum.  I'm icing my neck now and I'm off to bed soon.

If I only had a brain....

Wait!! I DO have a brain.  And I have pictures to prove it!!  So here's my brain.  Nice eh?  Well, look at the back of my skull - it's kinda curved in.  And where the skull ends and the vertebra go into the skull is the Chiari malformation.  I've added a line to show where my herniation is protruding.  The NS said 6mm to 7mm.

So my headache last night and today are mostly caused by this herniation.  Today was a 7/10 day.  I made it through work and dinner, but had to take a Maxalt because I was nauseated and really sensitive to light.  Time to go find an ice pack and check out the rest of my MRI pictures. I have the disc until we go to Toronto on October 26th.