Tuesday, August 31, 2010

Post-Op Report

Monday was a long day.  It was also extremely hot.  Mum and I flew to Toronto for my follow-up with Dr. Gentili.  The basic gist of the appointment...

Posterior fossa decompression surgery looks like it was successful.  Dr. Gentili is very pleased with my recovery and progress thus far.  
My scars look good - the head is great, the thigh is not as good, a little hypertrophic - it's red and wider than it should be.  I can get some serum to reduce the look of the scar if I want to. But as I see it, it is a battle scar, not a beauty mark.
I can start driving in about two weeks.  But no driving in Toronto - hahaha!!  And just for short periods of time to start.  No 3 hour trips for a while.
Dr. G (I'm tired of typing his whole name, sorry folks, you get who I'm talking about) isn't confident that the numbness in my left leg is Chiari related (I disagree with this, but he is the doctor) and said if it persists that I should bring it up with my family doctor.  I also have some disc issues in my back which might be why I have the numbness.
I was told to see my eye doctor to make sure I don't have any retinal issues as I've been seeing more spots and halos than normal and Dr. G wants this monitored but doesn't think it is from the surgery.
I will have an MRI done here and send the results to Dr. G.  He will use the MRI as a base line to monitor my herniation and the arachnoid cyst in my right temple.  If the MRI looks good I don't need to see him until June next year.  If he sees something amiss he will let me know and I will see him in December or January.
After checking the clinical notes for the length of my herniation (sorry, didn't record it, but the tonsils were into the first vertebra) and if he took a picture during surgery of my brainstem (sorry, guess I didn't this time) he also looked for anything about my shoulder (nope, sorry, don't see anything and the positioning during the brain portion of the surgery should not cause my shoulder distress).  For the brain surgery I am laid on my face (obviously) with my arm externally rotated at my sides, not splayed out in a T.  But he does not know what happened when they moved me or rolled me over like Raggedy Ann.  He is sorry about my shoulder issues and did concur that the orthopaedic I found at Toronto Western is an excellent shoulder specialist and recommended I be referred to him by my family dr. as well.
Dr. G left the return to work discussion up to me and my family dr.

Mum and I walked approximately 7 miles in the 40C / 104F temperatures.  We walked through the Eaton's Centre, China Town, to the hospital, back through Kensington Market and back to the shuttle to the airport.  We were hot and exhausted, but it was a good day.  We had a few good laughs and a really nice early supper at Red Lobster.  And thank goodness for air conditioned airports and free cold drinks. And our flight was only about a half hour late getting in, so in all it was only a 18 hour day.

Today was the trip to my family doctor to discuss the shoulder and the return to work plan.

Family doctor (from hereon in fam dr.) did the referral to the second orthopaedic surgeon - the one at Toronto Western.
Fam dr. also did my referral for my brain MRI at Dr. G's request, sooner than later.  Hopefully it will be in the next couple of weeks instead of the traditional 6 to 12 week wait we usually have here for MRIs.
Return to work - hahahahahahaha - not possible with my shoulder right now.  My shoulder is getting worse by the day and the activities I can do with it are less and less.  I cannot hold a bath towel with my arm outstretched to fold it.  I cannot pour the kettle without supporting my arm with my left hand.  It's killing me to type my post, but I can't stand typing left-handed only... And the pain gets worse as the day goes on to the point that by 3:00 or 4:00 I'm usually very uncomfortable and bordering on wanting to go to the emergency room.  (but what's the point, they can't do anything for it anyway)  It burns in my shoulder, radiates down to my fingers, down my clavicle into my chest, up my neck into my jaw and ears, and down my spine.  OUCH!!!! And no pain killers work.  Where was I?? Oh yeah, even without the shoulder issue my fam dr. would like me to have 4 more weeks off of work.  But because of the shoulder 6 to 8 weeks more off work, minimum.  We will revisit the return to work sometime early October.
Fam dr. would like me to have the MRI results before I return to work.  And if it's in the stars, the cards, the heavens, and any other thing that could work in my favour, also to see an orthopaedic before I return to work.  So I'm on extended "vacation".

After my appointment I stopped in at my office to let my two bosses know what was up and talk to the HR department about the end of my short term disability coverage and the start of my long term.  Good news there, there should not be a lapse between the two plans and when we get close to the end of October I just have to pay my fam dr. to fill in more paperwork to confirm my symptoms and that I cannot yet perform my duties at work.  (I have not mentioned how much I dislike having to pay $30 for my fam dr. to write on a form for my insurance company telling them I cannot yet return to work.  But them's the breaks right??)  Both my bosses were in meetings, so I had to hang around for a while.  I chatted with a couple of colleagues and then brought my bosses up to date.  Both are sad that I cannot come back right now, but neither want me to rush back either.  My male boss noticed that I'm still having trouble with the cognitive thinking and transferring it to speech, but he was nice about it - said he could live with it.  (not in a condescending way, typing it out sounds condescending...)  It doesn't happen all the time but only when I'm trying to think quickly - like responding to a question.  My female boss misses me and really wishes me nothing but the best (she is possibly the nicest person I've ever met).  She too said once I am back she will accept any difficulties I might have returning to my duties and we will work with them so I can be the assistant I was before my surgery.

So, 6 to 8 more weeks off, at home, continuing to heal my head and hopefully hear from an orthopaedic!!

Sunday, August 29, 2010

Neuro Follow-up Tomorrow

Tomorrow promises to be a long, hot day.  Mum and I are headed back to Toronto Western Hospital to see Dr. Gentili for my posterior fossa decompression surgery follow-up.  
We fly out at 7 am and arrive around 9.  I planned out our day sort of.  We'll take the shuttle to Union Station and then walk up to the Eaton's Centre for some shopping.  (Why is it still called the Eaton's Centre if Eaton's went belly-up 10 or more years ago??)  Then we can walk or take the streetcar to the hospital for my appointment at 1:45.  I hope my mum's hip isn't bothering her because I'd really like her to walk through Chinatown!! I love it there.  It is so culturally diverse for 3 or 4 blocks and the bam - back to TO.  After my appointment we'll head back to the financial district and mall area for an early dinner at Red Lobster.  Then back to the airport by 6 for the flight home.  I mapped it out and if we walk all of it we're looking at about 10km / 6.25 miles, without the mall walking.  I can do up to 5 miles a day right now, but not all at once... So we may have 1 or 2 streetcar rides tomorrow.
I'm not sure what Dr. Gentili is going to say.  I'm sure he will agree that the surgery this far has been a success.  I don't know what he will say about going back to work.   Brainwise I am fine to go back I think, it's the dang shoulder that may prevent me.  I know I still have to have another brain MRI to check the decompression and CSF flow too.  But I think it will be another month before Dr. Gentili wants that done.  
Should be an interesting day. Tuesday I see my family doctor to determine my return to work based on what Dr. Gentili said.  And I will update my 3 loyal readers once I'm home from that appointment.
For now, I'm going to go soak up some sunshine as it is already 28C / 84F with the humidex.

Thursday, August 26, 2010

A Letter From Your Brain by Stephanie St. Claire

I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.
As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.
I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.
How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?
Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.
What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.
I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.
I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.
I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.
Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.
Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.

your wounded brain
©1996 Stephanie St. Claire
May be reprinted for personal, not for profit use.

Tuesday, August 24, 2010

101 Things, the Final Installment

I did it!! I'm done!! I actually came up with 101 things!!

33.  My favourite colours to wear – lavender, lilac, purples.  I can wear a different shade or purple every day for 2 weeks and not wear the same thing twice
32.  I had hair to my waist and cut 16” off in January 2008 and donated it to Wigs for Cancer.  The latest haircut before surgery wasn’t quite long enough to donate
31.  We bought our house 8 years ago and yes, it is still a work in progress.  If you don’t like it, too bad.  We live here, you don’t.  We’ll get the kitchen remodeled when 1. we can afford it and 2. when we can afford it!
30.  I am still good friends with a few people I’ve known since birth.  Yes, that’s 34 years.  In this day and age how many people our age can say that
29. If David Boreanaz and Robbie Williams both showed up at my door I’d be hard pressed to choose which one I would eat cookies in bed with
28.  My grandmother died on a Saturday in May.  A spring morning.  She closed her eyes and went to sleep.  She did not suffer in the end and for that I am grateful.  And I miss her every day
27.  I prefer to wear Birkenstock sandals over dress shoes.  Yes, even with suits to work.  Dress shoes squish my little feet
26.  I dislike the smell of leather but I have to wear it for riding my motorcycle.  It’s hot, heavy and my gloves turn my nails black
25.  I wear my fingernails long.  They look like acrylic fake nails, but they are all my own
24.  I wear out the keys on my keyboards at work because of 25
23.  I spelled the Canadian way – colour still has a U in it
22. I practice yoga, but I’m very novice at it and have to modify some poses to accommodate my bad shoulder and my head
21.  When I was three I tripped over a skipping rope and fell on my aunt and uncle’s concrete steps.  My front tooth went up, into the gum and later had to be pulled.  I had no front tooth until I was 11 or so
20.  I cannot sing, but I would love to be able to sing
19.  I have been t-boned, rear-ended, and backed-into; none of these accidents were my fault.  Skidding off the road, that one was my fault
18.  I would like a dog, but I don’t have time for a dog.  It would be unfair to leave the dog inside all day while I’m at work
17.  I love flowers.  I would love to have fresh flowers in my house all the time.  Wish somebody (hint hint hubby!) would buy me flowers
16.  I’m not a big drinker.  Between 46 and a low tolerance for alcohol I’m a cheap drunk who gets a tummy ache
15.  If I ever fulfill 18, I would love to own a Weimaraner
14.  I can’t stand most scented anything – candles, perfumes, incense, room sprays – cause mega headaches.  I can tolerate lavender, real cinnamon, and sometimes cranberry
13.  I’m beginning to realize it’s hard to come up with 101 things
12.  I dislike going without my toenails painted – I feel like my feet are naked
11.  My favorite movies are Memoirs of a Geisha and the 6 Star Wars movies
10.  My eyes are green most days, sometimes with some blue tossed in
9.  I am addicted to iPod apps – Tap Ranch and Froggy Jump
8.  I saw the Olympic torch pass through town for both the ’86 Calgary games and the ’10 Vancouver games.  I think it was cool to be a part of it
7.  Have I mentioned that I love chocolate
6.  I like things homemade or homegrown – bread, jams, vegetables, food in general
5.  I don’t like horror movies; I have nightmares after
4.  I drink soy and almond milk instead of cow
3.  If it is possible, I’m addicted to grocery shopping.  I love reading the flyers every week and going for what is on sale
2.  I don’t buy anything I can’t get on sale if I can help it
1.  I can’t believe I  made it to the end of this list!!!
0.   (to make up for the entries at 13 and 1) I have a cell phone.  It dials numbers and receives calls.  It does not have games, or a camera or even downloadable ring-tones.  It doesn’t have text capability.  It’s a phone, not an internet surfing, networking, photo taking, iPod, keyboard in my pocket!

Wow, I'm done, and if you made it all the way through - hurray for you!! And to reward you here is a picture of my dream puppies from 15.

Sunday, August 22, 2010

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!)

Thursday, August 19, 2010

101 Things

I saw another blog or two with 101 things about the person, so I'm hitch hiking once again.  But rather than 101 all at once, I will divide it into a couple of posts instead, a little easier to read.

101.  I live in the same city in which I was born despite wanting to move away several times, I always came home
100.  I have one brother, one uncle, three cousins, one nephew, my mum, my mum’s partner, one papa.  Kinda small family, which I love deeply!
99.    I’m a 1998 alumni of Lakehead University – a Bachelor in French
98.    I drive a truck, not a car, not an SUV, a truck.  And I will always prefer a truck to a car.
97.    You can’t pick your in-laws, but I got great ones out of the deal, and I miss my father-in-law dearly
96.    I live where the average temperature in the winter is -8C / 16F in January during the day and overnight can dip to -38C / -36F.  In the summer we enjoy up to 16 hours of sunshine and temperatures in the 30sC / 80sF.  I like variety :P
95.    I love frogs.  I gave up counting at 125 collected frogs, and occasionally a live one or two – African dwarf frogs
94.    I speak English, Italian, French, and a little Finnish
93.    My husband and I have no children and do not plan to have any (don’t preach to me, I’ve heard all angles – it’s a medical reason)
92.    I ride a 1998 Kawasaki Ninja 500 – it’s purple and silver and I really miss  riding it this summer
91.    We don’t have cable or satellite tv.  We have rabbit ears on our 50” Pioneer plasma tv which gets us 2 channels most days, and up to 4 when the weather is right
90.    I love to garden.  I inherited that from my grandma and mum
89.    I am a Taurus and the year of the Dragon, and I fit both descriptions very well
88.    I prefer to bake my own bread.  But I use a bread maker to mix it because of a bad shoulder and arthritis in my hands
87.    I lived in La Spezia, Italy for 3 months on exchange when I was 16
86.    My father was born in Finland, making me and my brother first generation Canadians on his side
85.    My best friend lives 1,600 km or 1,000 miles away, and I miss her!
84.    I work as a legal assistant for 2 lawyers in corporate law.  Nothing nasty in my job – just business
83.    I am a crafter.  Needlework, beads, cards, painting, ceramics… I do it all
82.    I worked in insurance claims for almost 10 years just out of university, and no, it’s not what I went to school for
81.    I have had 2 surgeries to repair my right shoulder, 2 on my right foot, 1 for an ectopic pregnancy and 1 for posterior fossa decompression with a dura graft from my thigh (brain surgery….), and countless scopes
80.   My husband and I spent our honeymoon at Walt Disney World.  10 perfect days, 4 parks, and lots of roller coasters.
79.     My love of roller coasters ended with the Chiari diagnosis
78.    I have way too many Disney movies memorized…
77.    I have skied since I was not quite 3 years old
76.  I have an aquarium with tetras, neons, a pleco, and a catfish.  No froggies right now :(
75.   I trained as a lifeguard in high school and taught swimming lessons

Wednesday, August 18, 2010

8 Weeks

Eight weeks post-op was yesterday.  And I've felt pretty good for the past few days.  My hubby even noticed I have some more energy and I'm not lying down to rest as much.  And the temperatures dropped from the 30s (90s F) to the 20s (70s).  THANK HEAVENS!! It makes me feel a lot better without the high humidity.  I even baked!! Monday I made a lemon meringue pie, Tuesday I made chocolate - chocolate chip cookies, and today... hopefully I'll have the energy to make yo-yo's.

Instead of walking my now 1.7 to 2 miles, I decided to go to the pool for the first time since before Christmas.  I swam 4 lengths and realized how badly out of shape I am!! I was huffing and puffing... I used to swim, lots.  I was trained to be a lifeguard and swimming instructor in my teens.  I used to be able to swim 100 lengths of a 25m pool at a time.  Right now though I can only swim breast stroke and a gimpy freestyle, forget backstroke.  First, my shoulder doesn't like it at all, and second, my neck HURT! (Note to self, new goggles might help too!) So, rather than kill myself trying to actually swim, I did some aquabics for twenty minutes or so, then swam 2 more lengths and did some cool down stretches.    I was in the pool for about 25 minutes.  And now, I'm fairly tired.  I don't think I overdid it, but it definitely takes more energy than just my walk.  One good thing is my shoulder isn't killing me like it does after my walk.  So, those cookies may just get made soon!

We will be formally saying good-bye to my grandma on Saturday at a private family interment.  Grandma loved baking and cooking.  I remember many, many visits to her house baking cookies or bread.  So for the luncheon after interment I am also bringing cookies, some of her favourites were yo-yo's, hermits, chocolate chip and peanut butter.   I want to bring a little something - a comfort food I guess.  I miss my grandma, lots.  

Thursday, August 12, 2010

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.  

Thursday, August 5, 2010

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.

Monday, August 2, 2010

Trial and Error

I'm trying to see what I can do or can't do, a little at a time.  I have to start somewhere, so starting with small things around the house is a good place I guess.

Things like laundry - the husband brings it to the basement for me and I can manage to put it in the washer and dryer, then fold it.  Not bad.

I manage to make dinner most of the time by myself, although I get frustrated sometimes that I'm always doing it by myself.... But it's done, we're fed.  But I leave the pots to be washed the next morning... more for the sake of my shoulder than anything.  My shoulder is so bad that making supper then doing dishes is out of the question.

Still not doing housework per say, but I do wipe down the sinks and toilet, load and unload the dishwasher.  But I will not pull out the vacuum - my shoulder won't have it.  And scrubbing the tiles or the tub I know will be a little to much to handle.

I still haven't gone for a drive yet.  My neck is still pretty tight.  I move it every day so that I can teach the muscles to move again, but I don't want to be driving and in a situation where I have to react quickly and not be able to turn my head!!

Today's test - staying up all day.  No lying down.  No nap.  Just my regular Tylonel and ibuprofen for meds.  I need to know if I can manage it.  Tomorrow will be 6 weeks post op.  And at the end of the month I have to go back to Toronto for my follow up with Dr. Gentili - that will be a 20 hour day with flights there and back.  I need to know that if I stay up all day I'm not going to suffer too much for it tomorrow.  Let's hope I don't suffer for it tomorrow!! 

Yesterday my mum wanted to go raspberry picking.  So I joined her.  But we didn't find any raspberries.  So we went for a short drive to another location.  And still no luck - lots of plants, no fruit.  One last stop and we were going to head home... we didn't find any raspberries but wholly chokecherries!! My mum was in heaven!!  So in a little over an hour we picked 2 full 2 quart baskets.  Enough to juice for between 5 and 6 cups of juice!  And we plan to go back on Saturday - lots of red berried left to ripen for the week.  Mum will make up some chokecherry jelly - yum!!  So a pretty normal activity for a summer morning - and I did get tired, but I was traipsing through the brush for berries!  And I needed a nap when I came home... after a shower!

So I'm trying to get back to normal... whatever the new normal is.