The One Where I Really Haven't Thought of a Title

Without sensation in my thumb, index and now most of my middle finger, injuring my fingers / hand has become a daily occurrence.  I bent 3 fingernails backwards trying to open the oven door - didn't have my hand on the bar, just the tip of my fingers, but I couldn't tell...  I have more paper cuts and file folder cuts than ever - and don't those feel great when you soap up your hands and discover them... My brother-in-law put my new aquarium tank down on my index and middle fingers yesterday and I didn't really notice until I tried to move away...  The list goes on.  The fact that the numbness is progressing rather than receding is bothersome... Only 13 days until I have the EMG nerve study though... hoping for answers.  'Cause the pain in my arm / shoulder today is OUT OF CONTROL!

Hubby is trying to organize some of the stuff in our basement.  Mostly the totes of stuff I want to keep - photos, keepsakes, etc.  He brought up a couple totes for me to go through the other day.  So Thursday, he was working late, I sat down on the kitchen floor to look through tote #1.  It's never a good thing to reminisce.  At least not for me.  I didn't have a horrible childhood or adolescence.  But let's just say I'm really happy it is over.  Long over.  The tote contained everything I kept from about 11 years old through university.  Photos.  Yearbooks.  Scripts from high school plays I acted in.  Greeting cards.  A shoebox of letters from my dear cousin H and some other friends.  And all of my "Italy stuff".  

I started flipping through photos.  It turned out to be a task that will consume a couple of Sunday afternoons.  So I piled them up in a shoe box (I actually need 3, but only had 1 handy) and I will start sorting through and putting them in some semblance of order another day.  When you've got tears in your eyes in the first folder, you're never going to make it through the 40 to 50 more in the pile.  (I like taking photos.  I'm not very good at it, but I enjoy it.)  

The yearbooks and scripts all had the usual notes your write each other in high school - loved being in French class with you - you're such a nice person - you were so great in the play - wish I'd got to know you better - etc...  To me, most of it was crap made up by the person who signed just to show that I was included in the yearbook signing tradition, but no one really meant what they said.  Honestly.  And I only speak to or keep in touch with literally 3 people from that period of my life.  When someone writes in your yearbook that you will be friends forever, at 14 to 18 years old, you believe them.  When your friendships fall apart for reasons still unknown to you, reading stuff like that totally sucks.  And tears fell.  Especially the notes from someone you've known since the age of 3.  When you sat together in every grade through lower school and planned as many classes together as you could in high school, lived at each others houses, went on vacations together... and now it's gone - well, it's been gone for about 14 years... it hurts.  And more tears fell. (As I type there's a lump in my throat and a glisten in my eyes just remembering how I felt 2 days ago...)

Then I started looking at greeting cards.  Ones from friends I don't remember where taken out of the bin.  No point in keeping them.  The ones from my mum and cousin H in Finland I put back inside.  The cards from my Italy boyfriend were carefully piled up and put inside as well.  Then the cards from my grandma.  I didn't re-read them.  I couldn't re-read them.  It was too much emotionally for me to take by that point in sort.  So I sat on the floor and cried.  Or, more correctly, bawled like I did the day my grandma passed away.  Who would have thought a Christmas card from 10 years ago could affect me so deeply.

At this point I gave up sorting that bin.  I put everything I wanted to keep back inside.  I really only threw out a couple of items - an old sketchbook from high school... never really did learn to draw, some cards and a few loose photos.  Guess I'm just not ready to downsize my memories quite yet.

I don't know why I felt compelled to write about my sorting out experience.  I just know I felt like I needed to share my emotions with someone.  Maybe I'm emotional because everything else is just welling up inside of me - health, work, life in general...  I love my life.  I love my husband.  I love my job.  I love my family.  Just facing more medical issues is waning me... and I'm usually a fighter, not a give-upper.  I think right now, emotionally, I'm just tired.  I haven't and won't give up.  But I feel like I need a long vacation from all the medical stuff... even though I know that is impossible.  Until my mood improves, I will soak in the sunshine streaming through the front window, enjoy a cup of herbal tea with honey, and make the best of my situation.  After all, I'm still shiny side up.  It could be a whole lot worse.

Happy Halloween!!

I'm so tired of writing for my work hardening that I can't come up with any ideas for my blog.  Yep.  Writing up to 8 times a day can really throw writer's block at you.

So here's where I stand.  Waiting to see the orthopaedic surgeon on November 30th.  At that appointment she will have my neck and head MRI results to see if we can figure out why my shoulder feels like someone has a flame-throwing pointed at it right now. And why my fingers on my right hand only work when they feel like it.  The rest of the time they feel like wood.  

I persevere with work hardening up to four hours of the day now.  Typing, writing, pushing and pulling drawers, screwing nuts on bolts, squeezing the life out of my squeezy thing - a motorcycle, and my stretches.  I'm tired.  I'm sore.  And I'm pushing through.

In other exciting news Disney is coming out with a new princess movie!! Tangled will be out November 24, 2010, and introduces Rapunzel to the little girls of the world.  Quite by coincidence my Halloween costume is Rapunzel!! And I got quite a few comments from little girls last night as I handed out treats!  Next year I'll be right in fashion!

We had a great Halloween this year.  The weather was mild and dry with little wind!!  I remember years with snow storms and tugging my costume over my snow suit.  We had 65 kiddies stop by, which I thought was lots for a Sunday night. I ran out of candy and turned off the lights about 8:15.  Not bad.  Our first treaters were here around 5:30, just as I lit the pumpkins and candles.

No, I'm not as talented as the fellow who carved the pumpkin in my last post, but here are my pumpkins all the same...  And I cheat.  I put these guys away every year and take them out next fall.  They're foam!  One of the best craft inventions ever!  One of the girls that came by asked if I painted the pumpkins white!! She hadn't seen a white pumpkin before.  I had to softly tell her that they are foam.  And then she laughed.  But yes folks, there are white pumpkins!

Physio

Physio is going well and not so well.  My physiotherapist is fairly certain that I have damage to muscles and nerves.  But without the MRI results she is cautious in her treatment plan.  Results should be available sometime this week.  And of course my family dr. is not in town... so she will have to request the MRI from the hospital herself, or wait until October 18th when my family dr. returns.  (I'm a perpetual run-on-thought lately... where was I?)

We are doing nerve flossing and passive motion only.  My shoulder seizes up at times and catches and won't move through the motion she is trying.  It makes progress difficult.  And she finally found my pain.  For the first few visits she could not replicate my pain by moving my shoulder.  Now, finally on Wednesday she found it and it indicates that the labrum is torn by the ball of the humorous - again.  It could have happened because my labrum was already repaired once, or could have torn in a completely new place.  She is not sure.  She also believes I might have a tear in the deltoid muscle.  My radial and my median nerves show signs of damage... And only the supraspinatous muscle in the rotator cuff appears to be working.  It's a complex problem.  But she is trying very hard just to keep me moving.  But pain management and strengthening are out of the question.  My pain is so intermittent that it is hard to manage.  It can be completely gone for hours and then it can suddenly be 8/10.  It is frustrating.  She tried ultrasound and interferential, but neither have offered me any relief unfortunately.

My physio is very happy with my knowledge and acknowledgment of my pain and my explanations of what is going on with my shoulder.  I've been through two shoulder surgeries, I know the terminology.  It helps that I understand what is happening as well.  It's just frustrating that I can't help fix it.

The worst is waking up several times a night in so much pain that I can't even roll over.  The hubby says I have woken him up - I'm whimpering in my sleep.  Yeah, I'm in pain.  But I continue to try and do normal things - cook, dishes, a little shopping, and finally driving.  But by the end of the day, and two or three sets of the physio exercises, I'm done.  My shoulder pain radiates down my entire arm, across my shoulder blade, up my neck and down across my chest.  I can reach forwards, sometimes without pain, but not abduct at all (to the side).  It's agony if I try to reach sideways.  Physio explained that some of the neck and chest pain results from the other muscles compensating for the muscles which are torn.  My pectorals and trapezius are trying to work instead of the rotator cuff muscles.  Wonderful.  I really look forward to those MRI results too... I'm in need of some answers.

Appointments Galore

I feel like I'm living at a clinic, hospital or lab all this week and next!

Physio started on Monday morning with a 1 hour 20 minute very thorough assessment.  The therapist  isn't really sure what is going on.  There is a problem with my deltoid muscle for sure, and quite likely some nerve impingement as well.  She said there is definitely something neurological going on.  Could be as a result of my arm being externally rotated and in a fixed position for my 5.5 hour surgery in June.  

Physio gave me a couple of exercises to do at home three times per day.  Epic failure on the abductor extension to do a spider walk with my fingers up the wall.  I am in absolute agony trying to raise my right arm to the side.  I cannot extend my arm fully further than a foot from my side with it straight.  PAIN, burning, searing PAIN!!  And then I bend my elbow or turn my torso to lessen the pain.  Hmph... a definite sign of something terribly WRONG!

I also had my full physical on Monday afternoon.  Won't die of high blood pressure according to my family dr.  And just to be safe he sent me to the lab for the usual fasting blood work - cholesterol, sugars, B12, blood counts, etc.  Everything else looks good.

Wednesday morning before physio I went to the lab and sat for an hour... and they didn't get me in (!) so I went back after physio to see the vampires.   (Why when you tell the lab tech that you won't get blood out of my right arm did she insist on finding out for herself!! ARGH!!)  At physio it was more assessing and some nerve flossing and passive motion.  She is trying to get my shoulder moving.

Wednesday night I also had my MRI of my right shoulder to help find out what's up with it.  Results will be back in about 14 days.  The "magic fingers" sensation of the MRI bed is NOT good for a 12 week post decompression patient.  I still have a headache 2 days later... (sigh...)

Last night I went for tea with a Chiari sister.  We met before my decompression.  She has had 4 brain surgeries 7 years ago - decompression, patch, shunts... All at the age of 17!  She's a wonderful young lady and I'm so happy to know someone in town who I can sit down and talk to.  In a town of 100,000 people it's a rare find.... or not so rare... I know of 2 other Chiarians who have not had surgery and 1 sister-in-law of a co-worker who did have surgery... so in other words, Chiari is more prominent in my little town than it should be!

And back to physio this morning.  Heat, more nerve work and passive stretching, and IFC to finish off for pain management.  It's funny - I'm not generally in pain, but I go through fits and spurts.  Pain when I try to do something - fold towels, wash dishes, shampoo my hair.  But having the therapist move me through the motions is fine.  And frustrating.  It's hard to figure out what is wrong when she can't reproduce my pain.

Appointments are done for the week, thankfully.  Next week I have physio x3, massage therapy, eye doctor appointment, lunch with a friend, and that's just for starters!!  Thank heavens I'm driving again!

101 Things, Part Two

Shall I carry on??   

74.  I don’t eat beef, pork or dairy

73.  My favorite holiday is Halloween – you can be anything you want to be!

72.  The most influential person in my life was my grandma

71.  I went to a high school that had over 800 stairs, and the best cross-country and track teams because of it.

70.  My favorite drink is juice – Minute Maid punches, followed closely by peppermint tea with honey

69.  I don’t tolerate caffeine, hence the peppermint tea in 70

68.  I have driven across half of Canada – the Western half

67.  My husband and I were set-up by a mutual friend

66.  I love to read historical fiction – Colleen McCullough, Anne Rice are two of my favorites

65.  I love things ancient – Egyptian, Roman and Greek

64.  I visited the ruins in Rome and the outside of the Coliseum but everything was closed because it was a national holiday :P

63.  I stand 5’1” tall

62.  I was born during a heat wave and kept my mum up all night

61.  I intensely dislike the take off and landing while flying

60.  My husband does most of the heavy housework.  I do the cooking

59. If I could go anywhere in the world, no budget, no conflict, no terrorism – I’d go to Egypt and tour the pyramids of Giza, Luxor and the Temples of Carnak

58.  I love music.  All kinds of music – 30s and 40s, classic rock, current pop and rock, country, classical, broadway.  I don’t like jazz, hip hop or rap

57.  There are days when I can really relate to Eeyore

56.  I married my husband exactly 8 years to the day I met him

55.  I cannot grow house plants.  I can kill a cactus. 

54.  I took piano lessons for 5 years

53.  Instead of having a day-after party for our wedding my husband and I went riding on our motorcycles

52.  I believe chocolate should be it’s own food group

51.  I learned to write left-handed in high school when I chipped my elbow bone of my right arm

50.  I’m petrified of being sick to my stomach.  I cannot discuss it, I cannot hear others talk about it, watch it on tv including on Southpark.  And no, I don’t know how to get over it

49.  I am allergic to most man-made painkillers.  Give me morphine or see me suffer the side affects of most everything else

48.  My wedding ring is size 4 ¹/₂, my pinky is under a 3. Yes, I have small hands

47.  I ran into a bird while driving 90 km (55 mph) on my motorcycle.  I did not stop to see how the sparrow was.  It hit me square in the forehead.  THANK HEAVENS for full face helmets!

46.  I have irritable bowel syndrome (IBS).  During a flare in 2006 I lost over 40 lbs in 4 months because I couldn’t digest anything I was able to eat.  Great for the waist line, bad for my immune system.  Hence 74.

45.  Re: 81 – my orthopaedic surgeon for my 2 foot surgeries always knew there was something wrong with me more than he could diagnose.  Turns out he was right – Chiari!!  I should sent him a thank you card for not giving up on me (even if he didn’t lead me to the diagnosis)

44.  I’m learning to enjoy Christmas – I used to hate the holidays

43.  My grandparents were married for 60 years.  I can only dream my husband and I live long enough to enjoy the same

42.  I love to cook, but I’m always worried that what I make isn’t good, especially if I can’t test it because of ingredients I can’t consume due to 46

41.  My favorite artist is Michelangelo

40.  I screen my phone calls and have talking call display so if I’m not in the room my phone tells me who is calling

39.  I’m a huge arachnophobic.  That and 50 could put me in the mental ward.  If a spider is near I’ll grab the vacuum.  In my logic, they can't crawl back out the hose

38.  If I had to chose a time of day, it would be morning, I function my best and usually my pain is the least at that time

37.  I wear a size 5 US, 36 UK shoe

36.  I used be afraid of the dentist to the point I would be physically ill.  Now I have a new dentist and it is much less tramatic

35.  I love Angel, Bones, CSI and CSI New York.  I’ve seen every episode of all 4 shows and have most of the DVD box sets

34.  My favorite food would have to be chocolate.  Followed closely by anything made for Christmas or Thanksgiving dinner except turnips

I'm working on the rest!! Watch for it!  (If you're not already bored to tears that is!)

What to Report??

Well, recovery continues... brain and leg are healing well. I'm up and walking 1.5 miles every morning and sometimes up to 1.3 miles in the afternoon if it's not hotter than the Mojave out there!!  My shoulder is still giving me GRIEF! But I can't do much about it until I have my MRI and then see an orthopaedic... I have one locally and one in Toronto to whom I am being referred.  Whoever can get to me first I will see.  Yes, it's that frustrating and painful that right now I'd be willing to chop it off at the joint and go limbless.  Except, I would have to work on my left-handed hand writing again...

Seeing as I don't have anything to report on my recovery, I thought I'd post a pic of my latest creation...  

Christmas fairies - in red, pink, violet, blue and crystal. Red photographs the best. I've started working on some other designs too - Christmas trees - and I'll share them with you soon too.  I also really want to get out the fabric and porcelain heads to make some more angels.

It's pretty quiet around here so I have a lots of time to work on my crafts when I have the energy.  There are lots of days when my shoulder screams at me to stay away from the wire cutters and dishes of beads, but I try to push through and make one or two things...  Days like today when the humidity is high and the heat unbearable there's not much I can do outside, so sitting in front of the fan with my projects is it.

I have to place an order for more beads sooner than later it appears too.  I've been using them up like crazy.  My local store charges an arm and a leg and a foot for beads so I buy there in a pinch when I'm running low.  But my ultimate supplier for beads comes from, surprise surprise, the US, Florida to be precise.  The price difference when you can buy bulk is astounding - 18mm pearls $0.40 here, or $0.07 from the US, including shipping and exchange.  Not to mention the variety and the bulk bags I can get.  When I use almost 100 of a bead on one project and the local supplier sells the bead in bags of 100 - kinda gets expensive.

But not to bore you any further with talk of nothing anyone else in the world is interested in... I'll sign off and wish everyone a pleasant, cool evening.  

A Letter for Those Who DO NOT Live with Chronic Pain

This letter was written and posted on the internet with no author revealed. 

A friend on FB posted this in her notes and I couldn't have said it better myself... For those of us with chronic pain, we understand.  For those who don't have chronic pain, we can only hope you will understand.

Letter to people without chronic pain:

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its affects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand:

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy." When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, "Oh, you’re sounding better!" or "But, you look so healthy!" I am merely coping. I am sounding happy and trying to look "normal." If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.

Thats what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying " You did it before" or "oh I know you can do this!" If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Please understand that the "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to "get my mind off of it" may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?

I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is: "You just need to push yourself more, try harder." Chronic pain can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off of forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be "normal." I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.

In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I ask a lot from you, and I thank you for listening. It really does mean a lot.

A Day in the Life of a Recovering Patient

My days are filled with cycles of activity and inactivity.  I get up, shower (or do it at night), go for a 20 to 25 minute walk, then come home and have breakfast.  This is all accomplished by 9:30 - and I'm very proud of that!!  Somewhere I read that if you keep a schedule while you recover you will recover better and have less difficulty readjusting to life after recovery.  

So I persist in getting up with my alarm at 8:15 every morning.  Okay, almost every morning.  I've had a few where I can't move until 9:00, but it's still not bad.  After breakie I usually grab the laptop for a FB visit and watch something on the PS3.  (We download everything we want to watch.  No cable or satellite - and locally we get 2 channels).  

Where was I??  Oh, yeah.  By 10:30 - 11 it's time for a rest.  Sometimes I watch a movie, sometimes I read, and sometimes I nap.  Depends on how little or how much sleep I had the night before. Lately I've needed shorter periods of rest - which shows I'm improving and healing - but I've needed more naps - which shows I'm back to my pre-op sleepless patterns!!!  I was so hoping that I would lose the 1 or 2 - 2 hours awake sessions with the surgery, but not so far. :(  Please, as I continue to heal, let me sleep through the night - at least once a week!  The nights of 4 hours awake at a time suck!

My hubby comes home from work around noon and I get up between then and 1 and have lunch with him.  Then, if I ask to run an errand or go somewhere off we go.  Short trips only to the grocery store or Walmart.   Usually I just grab my book and sit on the patio in my chair if it's nice out, and occasionally have a nap. Again, the nocturnal sleeping habits are messed up!  I don't know how I will manage when I go back to work!  I'm working on my lovely Birkenstock sandal tan lines.  I also read that you should not have sun directly on new scars - UV will make the scars more visible.  So I sit with my head in the shade and my legs from the knees down in the sun to stay warm.  I have a wide brim hat, but don't think I could tolerate wearing it yet.  And my lovely scarf makes my head way too warm to wear if I'm just sitting around the back yard. 

Depending on the day, sometimes I have to lie down before hubby and I make dinner, sometimes not.  After dinner it's off for my second walk of the day.  Right now I'm averaging 1.5 miles total per day.  Not bad for 3 weeks and 2 days post-op!  Sometimes hubby comes with me - he walks 3 days a week. We can't go our old distances of 2 to 3 miles yet, but I'm building up to it a little at a time.  After our walk, I'll lie down again until he comes to bed around 8.  (He gets up at 3 am)  Then it's out to the living room for an hour or two of internet, reading, watching movies and even working on the odd craft project.  It all depends on the day.

My post-op surgical pain is good and decreasing.  I have no more morphine to take - tonight will be my first sleep without it - wish me luck!!  My neck is stiff, but every day I turn my head side to side and up and down to remind the muscles where they used to go. My leg is getting stronger with all the walking and my knee only buckles threatening to collapse if I've gone too far.  My shoulder however is still killing me.  I can barely lift it to the side higher than my waist, and forget stretching it forward above my shoulder height.  I have a doctor's appointment for it on Tuesday with my GP.  Unfortunately, to get back into my former orthopaedic surgeon, there is at least a 9 month wait right now...  We'll see if my GP will order an MRI and if I can get a diagnosis that will speed up my wait for the ortho.  Please cross your fingers for me.  I went in for brain surgery and came out wondering if I'll now need shoulder surgery for the third time.  I so don't want to go through that again!! Nor does hubby!

Post-op Pictures

For the squeamish, I recommend you forgo reading this post.  I'm going to post photos of my incisions with and without the staples.  I've had friends on FB say they can't handle seeing them. So you have been warned my sensitive readers.

Here is my zipped head... There were 30 staples in there.  And not too much hair removed! :)  My husband did an amazing job of taking care of my and my incisions until I was able to take care myself.  He washed my hair - with baby shampoo folks.  It's recommended for post-op on some Chiari websites and I decided it would be good advice to follow.  I first had my hair washed 6 days after surgery, and since then every 2nd day.  The bandages were off after 7 days.  As a precaution we were told to leave them on until we had travelled safely home.  First I didn't want to freak out any passengers who could see my neck beneath my scarf, and second for cleanliness reasons. 

Dr. Gentili's staff did a very good job closing me up.  The staples were mostly nice and tight.  My leg had 22 or 24 staples.  Because some were doubled up it was a little hard to tell.  I can see my leg scar if my leg is in certain positions.  I still cannot look straight down and see my feet or belly, but it is improving.  I turn my head every day from side to side and up and down gently to teach the muscles to move again.  Having been through shoulder surgery twice I know about relearning to do things that atrophied muscles have forgotten.

Post-staple removal:  OMG!!! My dear old family doctor took out the staples in my head first, along with a handful of my hair, and not the short, growing in hair - the permanent stuff! OUCH!!! And because some of the staples were doubled like the ones on my leg he had to take 2 at a time.  And because they were tight against my skull it was difficult to lift them.  His office was hot and stuffy and there was a 1000 watt light shining on me.  Between the heat and the discomfort I nearly passed out.  Thank heavens my husband was there with me and held me up, literally, from passing out.  But my doctor was happy with the incision and the healing to date.  Said it looked really good and he had no concerns over the couple little spots that had sort of lifted when he pulled the staples.
  

Removing the staples from my leg hurt less than the ones from my head, but it was still uncomfortable.  But, it was over.  My leg incision opened up a little after my first shower a couple days later so hubby taped it over with steri strips to make the incision lie flat again.  It doesn't look too bad today.

Of all of the pain and everything I have been through with the surgery, recovery and staple removal, I'd say the staple removal was the most uncomfortable so far.  But, it lasted the least amount of time!  

I'm really tired today, but I am also weaning myself off of morphine.  I have not had a pressure headache that has lasted more than a couple hours and was only 1 or 2 / 10 since the surgery.  My legs have gone numb once or twice, but it also didn't last.  My thinking and speaking are much clearer, even on morphine.  Yeah, the tinnitus is still in my left ear, but it doesn't seem as loud sometimes, which is great!  Plus it is gone from my right ear.  I know, just about 3 weeks post op I still have a ton of healing to do.  Heck, I still lie down 2 or 3 times a day.  But I'm feeling better recovering than I did before surgery.  I have started to walk twice a day again and average about a mile combined.  I'm feeling good.  Surgery is not a cure, but it has definitely given me a lot of hope that in time my life will come back to normal.

Observations at 2 weeks

I'm honestly feeling good!

Sure, I have pain and fatigue and the occasional upset tummy, but I do not feel at all like I did before surgery.

The pressure - like a balloon is going to burst inside of my skull - is gone.  I've only felt it for a few minutes here and there when I've overexerted myself.  Oh so nice not to have pressure headache!!!!

My legs are not numb :) Sure, they fall asleep, but they are not going numb!!! A huge factor I'm not missing at all!  I can now sit or stand without my legs feeling all tingly.

My thinking and speaking is clearer.  I'm still struggling a little, but I'm also still on hydromorphine 3 times a day... I can't wait to see how much clearer it gets and how much easier it will be at work (but I'm not going back to work for 2 months yet).

I still have tinnitus in my left ear.  Yeah, I can live with it.  The pounding in my right ear is gone and the swishing sound has decreased in my left.  I can only hope that as I heal the tinnitus disappears completely.

Right now I'm a little unsteady on my feet - but I have 24 staples in my right thigh.  I know that my unsteadiness will improve as my leg heals.

My only complaints from the surgery - my lip where I had the huge welt is numb.  Kinda annoying, but I'm sure as the bruise goes away the feeling will return.  And second - they wrenched my right shoulder something terrible during surgery.  I shouldn't have been too hard to move about while unconscious, I only weigh 115 lbs.  But my shoulder is killing me.  I've had 2 surgeries on it in the past and the staff were all told to be careful of it, but I guess they couldn't have been too cautious.  My shoulder is actually more painful than my head!  I just hope it settles down soon too and that there has been no further damage.  Go in for brain surgery and come out needing shoulder surgery?? Not good.  I'll have my family doctor check it tomorrow when I have my staples removed.

At this point in time I am extremely pleased with the surgery and my results.  I still have a long recovery until I am 100%, but as a preliminary statement surgery in my mind was a success.  Now, on August 30th Dr. Gentili had better say 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.

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.

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.