Wednesday, July 15, 2009

pray

Please pray for me, I'm having a lot of issues with pain and coping.
thank you.
I hope to be up to blogging again soon but tonight, I'm just trying to cope.

Soli Deo Gloria

Monday, June 1, 2009

invisible

This is a poem I wrote a while ago, it's from one of my days where my disability is invisible (aka no mobility aides) I was being mistreated by a staff at the train station.

you see me
but do you?
to your eyes
how do i look?
young girl with pink hair
a little dumb
flustered and shy
never giving eye contact
but do you know me
before you throw me
to the ground
and stomp on me
did you know?
I don't see like you do
did you even think
that something might
be wrong?
did you know?
I don't think like you do
I'm not stupid
just different
did you know?
I'm important in someones life
not just another useless youth
although not one person is useless
did you know?
that God loves you
and I forgive you
for your ignorance
did you know?
I cried today
because of your mistreatment
not because of physical pain
but the pain of being labeled
as stupid once again
by someone who doesn't know
that I am not invisible
only my disabilities are

Tuesday, May 26, 2009

i hath returned!

I haven't blogged in a long time, lots to do, many vacations and travels, stemming all from the need to see a specialist 6 hours away from my home. Some people may see it as a hastle to have to travel that far away for a 30 minute appointment but I got a lot of joy out of it. I visited with many friends and had a great time!
I've been thinking about how lucky I am, that God would see fit to be in this life of mine that is total shambles, totally depraved and totally sinful and use it, truly use it, for His Glory. that is my highest wish.
I have felt in the past that I do not know enough about the bible to be a proper Christian, but God is so good to have put people in my life for the betterment and encouragement of myself.
I am deeply thankful for a virtual game called Second Life, because it has truly changed me in that the people I have met and the good news that has been shared with me in a forum that I never thought possible. I have learned things from some of my friends on Second Life that I never would have thought I would be interested in!
I'm becoming a deeper person, a more educated person and it's all because of a "game"!
God is so good and He never ceases to amaze me in what he uses to get things into this thick little skull of mine.
I never thought it would be in a game though!

Thursday, April 16, 2009

hints of springishness


For most people, flowers or birds hail the first hints of spring, but for me spring is not officially here til I see the shiny paint and polished chrome of an old car like this one:

I was out for a walk today, and I saw a great beauty roll on by me.
I don't know what it is about old cars that I love so much.

Is it their durability? the fact they aren't made of thin steel and plastic. old cars are much like old people lol they are tougher, more weather resistant.

Is it the painstaking amount of time their owners or refurbishers put into them? heck ya! I think seeing the workmanship and dedication they put into their art is beautiful!

Am I attracted to the dazzling colours and sheer shiny-ness? abso-fricken-lutely

IS there a point to this blog? nope

Happy Spring!
SDG
REformed girl

Tuesday, April 7, 2009

a bad blogger I be!

Hello dear friends!
I am afraid I am not very good at this blog thing.
I think of it often, in my daily existance things come up and I think "wow I'll have to write about that on my blog" and then inevitably the moment passes or I have trouble typing.

There are times when I look at other blogs and have what I have dubbed "blogenvy" (I know! I am so original eh?) because they have a clear theme and I do not. Ihope to be putting more scripture into my blog but not in a forced way.

I am hoping to blog more faithfully in the next few months. I really do enjoy it. It just takes energy and skills which I have not possessed in a few weeks.

Here's to new beginings and more blogging!
Thanks for stopping by!

SDG
REformed girl

Tuesday, March 31, 2009

step from the darkness

a step from the darkness

captives that are free
finally going home
so much to see
the sun is bright

the doors are open
pale faces emerge
the keys are broken
find where we belong

no more fear
of echoing steps
wipe your tear
WE are free

can I learn to cook?
if I have a chance
maybe read a book
so many choices

say goodbye
to cold showers
releaving sigh
away from icy stares

say goodbye to life in prison
say goodbye to 'us' and 'them'
say goodbye to abuse
say goodbye my friends

say hello to choices
say hello to life
stepping from the darkness
into the light


Written March 31, 2009

Today is monumental.
Maybe or maybe not for you but for my friends I am honoured to support, today is a BIG day.

Today, this day right here, all the institutions(prisons) for people with developmental disabilities close their doors. FOREVER!

I have heard horror stories, so many to count and they aren't mine to tell anyway. I have been traumatized by listening to those stories, I couldn't imagine living them.

But I am feeling so thankful for this huge step in our world.

A step from the darkness into the light of community.

Monday, March 9, 2009

Ripples

"11 You have turned for me my mourning into dancing;
you have loosed my sackcloth
and clothed me with gladness,
12 that my glory may sing your praise and not be silent.
O Lord my God, I will give thanks to you forever!"
Psalm 30 11-12 ESV Bible

I just found out the news on Tuesday in the middle of a meeting at the organization I work for.

It hit me like a punch to the stomach.

One of my dear friends had passed away.

She had many accomplishments to her name.

She had been a very valuable member of her community.

She had been and dancer and had even danced in front of Pope John Paul II and millions of people at the World Youth Days.

She had been a public speaker, helping to bring many people into our organization.

She had been a friend and a sister and a great aunt!!

It's so hard to write the "had been" parts of those sentences.

Tracy was a light to many many people....and she never spoke a word but had eyes that went directly to the core of your being.

Tracy couldn't walk but she danced in front of millions with the dance troupe from Toronto called the Spirit Movers. She did more than shine when she danced, she glowed! The joy she felt was very evident and she shared it with everyone!

It was in the small moments with Tracy, not the big events, that you would catch a glimpse of her sense of humour or her sense of fun, the truly magnificent spirit that God had given her.

Tracy loved having her nails painted.

She loved chocolate.

She loved cute delivery boys.

She loved life.

When I first met Tracy, I was a little scared of her I have to admit, she had such "high needs" but when she leveled those beautiful eyes on you, or when she laughed, it put you at ease right away. Her house she lived in was seldom serious (except during prayer times) and I remember 2 of us supporting her on another persons back and having wild "horse" races up and down the hall. I'm smiling through tears just thinking of that. We were all a bit young and crazy.

I remember Tracy's reaction if you even mentioned her friend Jane Powell. Might as well hand the woman the phone and start dailing. She loved to hear Jane's voice. Jane loved to hear hers.

I remember the last time I visited, I had brought Chocolate Gelato and Sparkling Grape Juice (the kind that tastes like champagne). Tracy wasn't so sure about the Champagne but she kept trying it a few times til she knew she liked it, but she made some pretty great faces and we all laughed quite a bit, Tracy included. She was never afraid to try new things.

She was an example of living life fully, with joy and love. I will carry her example with me through my life.

I thank God for the experience of knowing this most wonderful person.

We are all but a drop in the ocean, some of us just make bigger ripples.

Tracy made HUGE ripples.


Soli Deo Gloria
REformed Girl

Monday, March 2, 2009

Disability and God by Joni



This is all I want to say today.
Thanks Bud for bringing it to my attention.
Joni (pronounced Johnny) is an amazing woman! She echoes my ideals about disability and theology.
I am speachless, really. She is amazing, to God be the glory.
Soli Deo Gloria
REformed Girl

Saturday, February 28, 2009

a day of celebration and community!

video

National Organization for Rare Diseases (NORD)
www.rarediseases.org

World Rare Disease Day website
rarediseaseday.org

Wednesday, February 25, 2009

LOVE by Cirque



this is the show we went to, "Love" by Cirque du Soleil. it was not very accessable and the people were a bit rude (I'll explain another day) but the seats were awesome and the show and music was fantastic!

Tuesday, February 24, 2009

travels and trials

Hello friends!
Sorry I have been MIA for a bit, I had an issue with my body punishing me for a few days and then I was away in sunny Las Vegas for a patient advocacy convention! now that I am back I am going to be posting more often, possibly using voice or video when my hands are not behaving.
It's funny being what feels like the only non-gambler in "Lost Wages, Nevada" there was so many other things to do! We saw lions at the MGM, a big statue of liberty at the New York New York casino, we went and saw a great Cirque du Soliel performance.
It was fabulous and the best part was reconnecting with old friends I see once a year at the convention and meeting and giving hope to the newly diagnosed.
I am blessed and very tired.
More posts on the way soon!
Soli Deo Gloria
REformed Girl

Monday, February 16, 2009

bad body/good books

It seems that my body is deciding to continue to be rediculous so I won't be posting again today.
I am an eternal optimist though, this flare has given me an opportunity to do a bit more reading so it's all good.
all the same, I hope I can post again soon dear sweet readers.
God is good , all the time.
Soli Deo Gloria
REformed girl

Please Hear What I'm Not Saying

My body has decided to not do what I want it to today so I can't post what I'd like. but a friend shared this poem with me and I will share it with you.

Even though it is a bad day, God is so so so good! His grace is sufficient and so sweet.
here's to better tomorrows!

Soli Deo Gloria
REformed girl

Please Hear What I'm Not Saying

Don't be fooled by me.
Don't be fooled by the face I wear
for I wear a mask, a thousand masks,
masks that I'm afraid to take off,
and none of them is me.

Pretending is an art that's second nature with me,
but don't be fooled,
for God's sake don't be fooled.
I give you the impression that I'm secure,
that all is sunny and unruffled with me, within as well
as without,
that confidence is my name and coolness my game,
that the water's calm and I'm in command
and that I need no one,
but don't believe me.
My surface may seem smooth but my surface is my mask,
ever-varying and ever-concealing.
Beneath lies no complacence.
Beneath lies confusion, and fear, and aloneness.
But I hide this. I don't want anybody to know it.
I panic at the thought of my weakness exposed.
That's why I frantically create a mask to hide behind,
a nonchalant sophisticated facade,
to help me pretend,
to shield me from the glance that knows.

But such a glance is precisely my salvation, my only hope,
and I know it.
That is, if it's followed by acceptance,
if it's followed by love.
It's the only thing that can liberate me from myself,
from my own self-built prison walls,
from the barriers I so painstakingly erect.
It's the only thing that will assure me
of what I can't assure myself,
that I'm really worth something.
But I don't tell you this. I don't dare to, I'm afraid to.
I'm afraid your glance will not be followed by acceptance,
will not be followed by love.
I'm afraid you'll think less of me,
that you'll laugh, and your laugh would kill me.
I'm afraid that deep-down I'm nothing
and that you will see this and reject me.

So I play my game, my desperate pretending game,
with a facade of assurance without
and a trembling child within.
So begins the glittering but empty parade of masks,
and my life becomes a front.
I idly chatter to you in the suave tones of surface talk.
I tell you everything that's really nothing,
and nothing of what's everything,
of what's crying within me.
So when I'm going through my routine
do not be fooled by what I'm saying.
Please listen carefully and try to hear what I'm not saying,
what I'd like to be able to say,
what for survival I need to say,
but what I can't say.

I don't like hiding.
I don't like playing superficial phony games.
I want to stop playing them.
I want to be genuine and spontaneous and me
but you've got to help me.
You've got to hold out your hand
even when that's the last thing I seem to want.
Only you can wipe away from my eyes
the blank stare of the breathing dead.
Only you can call me into aliveness.
Each time you're kind, and gentle, and encouraging,
each time you try to understand because you really care,
my heart begins to grow wings--
very small wings,
very feeble wings,
but wings!

With your power to touch me into feeling
you can breathe life into me.
I want you to know that.
I want you to know how important you are to me,
how you can be a creator--an honest-to-God creator--
of the person that is me
if you choose to.
You alone can break down the wall behind which I tremble,
you alone can remove my mask,
you alone can release me from my shadow-world of panic,
from my lonely prison,
if you choose to.
Please choose to.

Do not pass me by.
It will not be easy for you.
A long conviction of worthlessness builds strong walls.
The nearer you approach to me
the blinder I may strike back.
It's irrational, but despite what the books say about man
often I am irrational.
I fight against the very thing I cry out for.
But I am told that love is stronger than strong walls
and in this lies my hope.
Please try to beat down those walls
with firm hands but with gentle hands
for a child is very sensitive.

Who am I, you may wonder?
I am someone you know very well.
For I am every man you meet
and I am every woman you meet.

Charles C. Finn
September 1966

Sunday, February 15, 2009

Jesus loves you, hurry up!

1 Corinthians 13:7-8a by carmelscribe.

"4 Love is patient and kind; love does not envy or boast; it is not arrogant 5 or rude. It does not insist on its own way; it is not irritable or resentful; 6 it does not rejoice at wrongdoing, but rejoices with the truth. 7 Love bears all things, believes all things, hopes all things, endures all things." ESV study bible 1 Corinthians 13:4-7

This reading is the goal for our lives.
In my BC (before Christ) years, I do not think this would be probable or possible. never in a thousand years. If I loved it was for the love back, nothing was selfless.

When God opened my eyes..............I remember the moment, the second.
I was staring into the eyes of a man, a wonderful, strong, beautiful, loving, giving man. A man of few words and hard to understand most of the time because of his particular accent, his speech was so hard to decipher the moments he did speak.

Then one moment, out of the blue, he said,
"God loves you and wants to use you for His good purpose. Jesus is waiting, He loves you, hurry up!"

Wow!
BOOM!

It hit me. The message my friends had tried to "pound into my thick skull" for years through prayer meetings, church social outings and the like. It never fit my life. Then all of a sudden, it did!

Did I mention...

the man in question has Down's Syndrome
very few people know what a jewel of a man he is.....
very few people know that he has a profound, profound message......
very few people know or would expect God to be using him for His glory.....
very few.......

but I do..............

Soli Deo Gloria
REformed girl

Saturday, February 14, 2009

Daisies

As a little girl I'd play the game as most little girls do.

I'd sit on the lawn and pluck a perfect daisy from the ground.

he loves me, smile, thinking of a future boyfriend or having someone specific in mind, depending on the year.

he loves me not, frown, but sure that the daisy was right, he didn't love me, couldn't.

"NO ONE COULD EVER LOVE YOU!" the voice in my head would scream, sounding remarkably like my parents " your broken, disabled, ugly, stupid, hateful. no one will ever love you or want to be with you, who would want to date or marry a disabled girl, a stupid girl, a fat girl, a short girl? no-one! that's who!"

It's taken me a long time to tone down that inner voice of learned thoughts (not true thoughts), some days are still a waged battle warring in my head.

Trying to pick the perfect flower with the perfect amount of petals so the answer would always be "he loves me"

Trying to find that perfect flower is like trying to find a perfect man, completely suited to you, that is a daunting job, but not for God.

When you put away your childhood, you put away childish things, that game as well goes in a back closet of my mind but never quite forgotten.

But I have new daisies now, ones with half as many petals, every other petal is missing, the 'he loves me not' ones have mysteriously dissappeared.

Love blindsided me early one morning in December, well even before that I think.

it's not my doing.

it's not his doing.

It is a plan that only can be attributed to God. We praise Him for our relationship and give all glory to the one that made us.

I am smitten.

I am twitterpated.

I am a woman in love.

I never thought that would be me, I thought it was impossible for me. I was told it was impossible.

IMPOSSIBLE!

Nothing is impossible for God.

Soli Deo Gloria

REformed Girl

Friday, February 13, 2009

Love


This week I will try to be blogging about love :)

Not because of Valentines day, which is a completely brilliant marketing scheme and which I don't celebrate. But because of a challenge issued at one of my fav blogs called Chewing The Fat by Dave, I will blog about love and disability.

I think you shouldn't have one day in a year where you show people you love them, but try everyday to show Christ's love to everyone, everyday.

So I will start tomorrow.

blogging that is

not loving

I'll do that everyday! :)

Soli Deo Gloria!
REformed Girl

PS thank you to all my subscribers! :) I can't believe I have 10! this blog started as something I wasn't sure I would enjoy but I really do enjoy it! I enjoy your comments (hint hint) and your company!
Thanks!

Monday, February 9, 2009

Friends and their working dogs

Day 197/365 : My old friend
I am thinking and praying for my friend Wallis as she started Team Training for her Canine Companions for Independance yesterday!
She will be gaining independance with the help of a new furry companion and I couldn't be more excited about it!
I have the paperwork at home to fill out to possibly get my own dog but I have many doubts about whether or not I will be accepted.
Have a wonderful time Wallis! This is a huge blessing for you!
Soli Deo Gloria
REformed Girl



Saturday, February 7, 2009

proud frontline worker

I am a front line worker

I see it everyday

the valientcy of life

and living everyday.

I am a front line worker

the one who hears the hurts

I see the beauty

where "the others" see no worth

I am a front line worker

people say I'm special to do this

but I'm not really anything much

this is why I exist

I am a front line worker

I get paid with triumphs and smiles

when I help someone to learn independence

or help them dress with style

I am a front line worker

I get mad when people just don't get it

that the people I care for, are people

give them a little credit

WE are front line workers

WE make no decisions

that is for "the higher-ups"

WE ALL just have to live it!

This is a poem written in frustration on behalf of the many "front line" workers of people with developmental disabilities and more importantly the people themselves who have to trudge though rules and royal decrees by people in offices who don't do what we do, who don't know our clients as well and who are downright punitive at times.

Rules and decrees that smash down quality of life in favour of a life watered down for our clients.

I am disgusted. I am angry.

I am saying enough!

Soli Deo Gloria

a very angry (at the moment) REformed girl

Have you hugged a calvinist today?

I am a calvinist.

I believe in TULIP and follow the 5 Solas with every fibre of my being.

When I tell people I am a calvinist, they say, "No, you aren't! are you? you're too nice to be a Calvinist!"

I chuckle about this every time but then I wonder, in our rigidity of doctrine and Sola Scriptura, do we forget the people we are dealing with, in relationship with, living with are also people who require our kindness.

we don't have to agree on doctrine, (or lack thereof) and I am not saying one can never be rude or have a bad day, but we need to treat people nicely.

I , too, have met my fare share of unkind people who happen to be calvinists, that is why I am filled with such wonder and praise that God kept working on my heart to reveal the truth of the gospel to me, because the first peoples I have met in my life who are calvinists had nothing but distain for me as a catholic.

I am just saying lets try not to tar and feather all people of a particular group as the same. 

We are told not to stereotype people but so far what I have heard is that it is ok to stereotype calvinists, hence the statement, "you're too nice to be a Calvinist!"

so my question to you is.................................

Have you hugged a Calvinist today?

Soli Deo Gloria

REformed Girl

Thursday, February 5, 2009

tall kids and short me

I love children.
Being a little person (yes I am 4'9"1/2) kids seem to relate to me in a unique way and I love it.
When I meet up with a child that I have known for a while, my first question is "Are you taller than me yet?"
My nephew once asked me why I ask this and why I was so excited once he was taller than me (for the record I think he was 10 when he was taller than me, my almost 8 year old neice is almost there)
I always say "I am glad you are growing, both in height and in mind, you are growing into the beautiful person God has planned for you to be. I didn't grow in the regular way when I was growing up and I am very glad to see that you are. I thank God for you and your healthy growth" (or something along those lines)
occassionally I get questions about what it was like not to grow "properly" or if it makes me sad.
I am rarely sad and never about my health situation(s).
God made me this way, why would I complain?


Soli Deo Gloria

REformed Girl

Tuesday, February 3, 2009

bring on the rain

this has become one of my new favorite songs.

here are the lyrics:

I can count a million times
People asking me how I
Can praise You with all that 
I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You

Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings 
You glory And I know there'll 
be days When this life brings me pain
But if that's what it takes to 
praise You Jesus, bring the rain

I am yours regardless of the clouds that may 
loom above because you are much greater than 
my pain you who made a way for me suffering 
your destiny so tell me whats a little rain 

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings 
You glory And I know there'll 
be days When this life brings me pain
But if that's what it takes to 
praise You Jesus, bring the rain
Holy, holy, holy
Holy, holy, holy
is the lord God almighty
is the lord God almighty
I'm forever singing 

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings 
You glory And I know there'll 
be days When this life brings me pain
But if that's what it takes to 
praise You Jesus, bring the rain

everybody singing 
Holy holy holy
you are holy 
you are holy 

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings 
You glory And I know there'll 
be days When this life brings me pain
But if that's what it takes to 
praise You Jesus, bring the rain

it's become all I want to say right now.

Soli Deo Gloria

REformed Girl

Friday, January 30, 2009

plans.......

*sigh*
I am so discusted with myself and my spirit of grumbling,impatience, complaining and doubt. I have repented to our God, hoping and trusting that He will forgive me once again for my numerous numerous sins and short-givings and now I ask you my brothers and sisters to pray for me.

In my return home from my appointment my return trip did not go remotely as I had planned, my train was over an hour and a half late and I was panicked. Generally I get off the train and take a cab or city bus (which are on strike at the moment) to the intercity bus station and then I have about a half hour until my bus leaves for the small town I live in. Well that was not going to be a possibility.
Before even asking or checking in with friends I was worried.

What is it about my fickle, feeble mind that I cannot keep it into my head not to worry, that there is a PLAN to everything!! It is so frustrating to me, and the fact that annoys me the most is that I KNOW I am spiraling! I know what I am doing and while I tell myself NOT to it seems like I am being sucked in, everytime. EVERYTIME!!! 

What IS that? 

I am very thankful to God for the friends that I have and whether my trip home was delayed or not I would have returned home to love and welcoming and for that I am truly, truly thankful. 

I am so filled with gratitude that everything seemed to fit together, like they always do whether or not it is in accordance with MY plan or not.

When am I going to realize that all things come together in a perfect plan?
When will I throw my PRIDE out the window?
MY plan
MY will
MY ideas
MY timeline
ME ME ME ME

ENOUGH!
I want my life to be about HIM!
HIS plan!!
HIS Will!!
HIS timeline!!!
HIM HIM HIM!!!

I throw away my will and cling to the one that chose me.
He is so good and I praise Him.

Thank you for your continuing prayers for me. 

Soli Deo Gloria

Wednesday, January 28, 2009

disability gear

Sometimes I wish my disability was more visable.

Even as I say this it makes me curious at the irony because anyone who knows me, KNOWS that I very much dislike using my mobility aides.

I am a walking conundrum.

I want courtesey and kindness and understanding, but doesn't everyone?

shouldn't everyone be entitled to that, not just those with disabilities?

I don't ask for automatic respect, I don't want it. I don't want respect for being a person with a disability out in the world. I believe respect is earned and if it is given without truly knowing a person it can lead to putting that person on a pedestals. I do not wish to be on a pedestals ever. 

But when people are unkind to me because they do not know I am disabled and they think I am just moving lazily or that I am stupid, that is just not acceptable and it is very scaring to a person.
I had a situation in the train that has happened copious amounts of times without incident. I am cognitively impaired, meaning sometimes I have problems processing or remembering details, so I forgot my information of my reservation to go on the train. Generally it is not an issue and I usually just give them my name and they look up the information and print my ticket. 

I had a problem on Wednesday though, I had a very difficult to deal with train employee who was obviously on a bit of a power trip.

I didn't tell him I was a person with a disability, He wouldn't have cared.

I didn't tell him I had done this before without incident, He wouldn't have cared.

I let him rant on about the laziness of youth in the world today. 

I wish people would realize that the way they treat others affects them, even writing this many days later is causing me pain. 

The look of discust and the feeling of worthlessness that that man made me feel is not acceptable. NOT ACCEPTABLE!!

I know I have worth, thanks and all glory in my life is to God, but these things still bother me and it bothers me that people think it is ok to treat people that way.
Somedays I feel like wearing a sandwich board saying I may look fine and normal but if they could see inside my brain it would be an entirely different situation! 
I will be filing a complaint, I have prayed about it and I realized that that man will make others feel bad again and again because maybe no one has told him it is wrong. I pray for patience and grace to explain the situation calmly and efficiently without anger.

Thanks for reading my ramble.
Soli Deo Gloria

Tuesday, January 27, 2009

my absence- mystery solved

My dear friends, I apologize for my absence of late.
I have been away to a hospital in a large city about 6 hours away for testing, I knew it was possibly coming, my general practitioner had told me she had put my name in to see a very reputable specialist but they called me last week and asked me to come in the following day and of course I could not arrange that much time off work in such short notice so they booked me for this past Thurday, I hastily made arrangements for accomidations (I stayed with a lovely family that I know through facebook of all places! we have met several times and they are very good to me, an adoptive third or forth home)

I will not mention much about the actual testing because there is not much of anything to mention. It was long and painful and rather quite boring, One of the blessings in it is that I learned that the policy in that hospital ( which I will probably regular at least 2 or 3 times a year) is that they have a 2 count policy, they will attempt to find a vien for an IV or bloodwork 2 times and then they will call in "the reinforcements". Maybe that doesn't mean much to you but to me it is a HUGE deal. I have nutoriously small, rolling, colapsing veins. So much so that I used to have a portacath, that is a little contraption inserted under your skin that allows immediate access to a vein. I have horrible luck and my record of "sticks" is 31 times that they tried and failed and I have had IVs in very strange and random locations, like the top of my feet or head!

So I was very happy about their 2 strike policy, for me that signifies good staff. Some staff can be very prideful about it, they want to try one more time, or do not wish to admit defeat. But my nurse, LORI is her name and she was fabulous, listened when I told her where my "best vein" was and actually used it! wow! I like that woman.

So I go back in May for a follow up appointment.

You may be thinking that that is a long time away but the trip is fairly long and involved and quite exhausting so I am glad there is a few months in between.

I am sure I will be blogging about my "adventure" for the next week or two and I hope to "introduce" you (if only in a minute way) to my wonderful hosts that are huge gifts from God.

Soli Deo Gloria

Wednesday, January 14, 2009

In the spectrum of RED

Hi everyone!

Sorry I haven't written in a few days, I have been slightly occupied with other random projects. I just wanted to say I am alive and well, I just wanted to relay a funny event....

I fell on Sunday.

I'm fine! don't worry! nothing broken!

It was the way I fell that was hilarious, I was slowly making my way down the stairs (to get tinfoil for dying my hair pink if you really needed to know) and my shoe hit a wee patch of water.

Next thing you know, various parts of my body are meeting various parts of the floor, knewl post and chair lift! Of course it had to be the part of the day when my housemates are all at the foyer waiting to leave the house!! They all kindof stopped and stared and two of the people offered to start helping me up. I just layed there and flashed my meanest index finger "just wait" signal and they let me be for a moment to assess if I had broken anything.

After a full inventory of my body.......

I'm fine! don't worry! nothing broken!

My hair may be freshly pinked, but boy was my face RED!!

Soli Deo Gloria!

Thursday, January 8, 2009

Cry

Well my usual fear has been fed today as another test has come back completely normal and my doc puts another tick on her long list of reasons why she thinks I am making this up. So she reluctantly sends me down another bunny trail.

Now let me make this abundantly clear, not many things have been ruled out, nothing really has because she has done so little. I know in a way that this is not her fault but I also know she is not doing much to add to this situation positively.

So I am bummed out. I hop on skype and talk to one of my good friends, Wallis. who also happens to have a undiagnosed condition that causes her quite a bit of pain. She is so helpful, I find her statements so profound and she doesn't even really know it. (she has graciously given me permission)

Wallis - i hope you feel better, maybe a good cry?
          did that yesterday

Me- already did
Wallis -  good
 its well deserved

Acknowledging hurt is sometimes the most comforting thing you can do for a friend in distress. Telling them it's ok to rage and scream and cry because they are safe and loved and not going to be judged is one of the most beautiful ways you can comfort someone.

Many people of the bible cried, there should be no shame in tears, Jesus himself cried in deep anguish at the loss of Lazarus (John 11:28-37)

It brings to mind the song from one of my favorite singers, Holly Cole

Cry (if you want to)

Cry if you want to
I won't tell you not to.
I won't try to cheer you up,
I'll just be here If you want me.
It's no use in keeping a stiff upper lip,
You can weep, you can sleep 
You can loosen your grip.
You can frown, you can drown
And go down with the ship.
You can cry if you want to.

Don't ever apologise venting your pain,
Its something to me you don't need to explain.
I don't need to know why,
I don't think its insane.
You can cry if you want to.
The windows are closed,
The neighbours aren't home,
If its better with me than to do it alone,
I'll draw all the curtains,
And unplug the phone
You can cry if you want to.

You can stare at the ceiling, 
And tear at your hair,
Swallow your feelings,
And stagger and swear.
You can show things and throw things
and I wouldn't care.
You can cry if you want to.
I won't make fun of you.
I won't tell anyone. 
I won't analyze what you do 
Or you should have done.
I won't advise you to go and have fun.
You can cry if you want to.

Well its empty and ugly
And terribly sad.
I can't feel what you feel,
But I know it feels bad.
I know that its real 
And it makes you so mad.
You can cry.
Cry if you want to, 
I won't tell you not to.
I won't try to cheer you up.
I'll just be here if you want me to be near you.

So I'm really upset about this because it means more waiting and more pain and no answers. 

Today, this moment.......... I just need to cry.

Wednesday, January 7, 2009

quiet little ways to say I DON'T BELIEVE YOU!

I'm nervous about my docs apointment tomorrow.

I have a chronic pain condition that is not currently diagnosed yet, it keeps getting blamed on my rare condition because....well.....it's rare. But it isn't that and I have fought really hard in the past year to advocate for myself.

I have a docs apointment tomorrow.

I set it up a few weeks ago because I had tests done last month and I know my docs office is busy and wouldn't get around to it if I didn't stay on their case.

So I am nervous NOT because she may tell me I have something wrong with me that is causing me pain, I already know that. I am nervous because she may tell me that I don't have anything wrong with me, like she has done a thousand times before.

*sigh* the hardest, most thoughtless words ever said to a person in chronic pain usually aren't even uttered aloud in words but actions that portray the the thought:

I don't believe you!

it can be said quietly or LOUDLY but it is said far too often in words and actions such as these:

- I've decided to not run any more tests, you have already used up enough taxpayers money with the first 3 that came back negative. (aparently it is forgotten that I pay taxes too!)

- I don't know what is causing your pain for the past year but no I won't treat the symptom of pain without knowing the cause (and I won't find out the cause because I've decided to not run any more tests)

- I'm sure it's just a normal part of old age. HA! 

- I'd hate to be too thorough now when you seem to be doing ok, lets see if it will get worse and then we'll try and see if we can find out what it is.

- it's probably just connected to your rare illness and I'm gonna call the specialist in TImbucktoo to see if he knows anything because I don't have any idea. I mean it's not my fault I don't have any other patients like you (duh? I thought that was the definition of rare lol)

Those are just a few of the many excuses I have gotten as to why the medical profession cannot be bothered.

I may seem really angry but I am not. Being in pain has taught me a lot, it has taught me to slow down and enjoy, it has taught me to pick my battles better and give up the rest, it has taught joy and it has brought me some of the best friendships in my life.

To all my friends on Second Life, if I hadn't had such a bad year, I would have been out enjoying my life and wouldn't have met such GREAT people and gotten so much closer to the Lord without His plan and this pain. 

I am thankful for this pain.

To all my friends on Facebook, I wouldn't have spent as much time as I have, getting to know you all, getting to love some of you very much.

I am blessed by this pain.

But do I want it to stay forever? HECK NO!

But I will gladly bow down before God and give thanks for my many blessings and lessons that He has taught me through this.

I will look to God's word to set me straight on being anxious and I will not fear, but live for today.

Matthew 6:25- 34 ESV Bible


25 “Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? 26 Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? 27 And which of you by being anxious can add a single hour to his span of life? [7] 28 And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, 29 yet I tell you, even Solomon in all his glory was not arrayed like one of these. 30 But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O you of little faith? 31 Therefore do not be anxious, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the Gentiles seek after all these things, and your heavenly Father knows that you need them all. 33 But seek first the kingdom of God and his righteousness, and all these things will be added to you.

34 “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble
.



Soli Deo Gloria

Tuesday, January 6, 2009

unshameless plug for a GREAT cause!

I have a confession to make.

I really love spoons more than forks or knives.

I mean forks are sharp and pointy and knives are just bad news when you are as clumsy as me! Spoons are smooth and you can see yourself in them, you can balance them on your nose and they are really good for eating noodle soup, and I LIKE noodle soup!!

But my love for spoons really went into overload last August when a friend directed me towards "the spoon theory" at www.butyoudontlooksick.com (sometimes called bydls for short) which is an online community for people with invisible (and not so invisible) chronic illnesses. it is an amazing resource and has hundreds of ways to promote patient advocacy. It's really great to be a part of the group there.

Anyway bydls and I need your help. The owner of bydls ( a very good friend of mine who is one of my heroes) Christine is up for a few awards for her patient avocacy blogs through butyoudontlooksick.com and we need your vote!

It only takes a minute and could mean bydls.com's name could get to one more person with a chronic health condition who feels alone. (you know...like I did before I found it)

Please go here

wellsphere health awards 


( you do have to sign up for this one but it doesn't take long and you don't have to use the site afterwards if you don't want to, althought it is a pretty great site for medical blogging)

here is yet another way to promote the bydls site and Christine,  vote for butyoudontlooksick.com at the The 2008 Medical Weblog Awards Sponsored by Epocrates: Best Patient's Weblog Category 
you can vote, it's really easy and here are the steps
1) go to this site    http://medgadget.com/2008bestpatient.html
2) click the circle next to butyoudontlooksick.com's name
3) at the bottom of the list click vote
4) smile, knowing bydls is getting recognition for a job well done and that other people are learning about bydls and how to be a good advocate when you have a chronic health condition!
thanks! 

both of these posts I have made take less than a minute and you can make a difference.

Wishing you all an abundance of spoons and thank you for taking a moment out of your day to help me help a great site.

I thank God for people like Christine, who is truly an inspiration and helps so many other people. She is truely an example of a Proverbs 31: 17-20 woman.

17 She dresses herself with strength
and makes her arms strong.
18 She perceives that her merchandise is profitable.
Her lamp does not go out at night.
19 She puts her hands to the distaff,
and her hands hold the spindle.
20 She opens her hand to the poor
and reaches out her hands to the needy.

Thanks again, you made a sicky very happy!

Soli Deo Gloria

Sunday, January 4, 2009

5 random non anon things

I have been thinking a lot about God's plan for my life lately and I thought I should tell you, dear readers and friends, a little bit about me whilst still maintaining my hard kept anonimity

I choose to be anon. partially because it's a scary, scary world here on the internet and partially just because it's random and randomness is the essence of me. Also people with disabilities have so little privacy at times that sometimes I really cherish it. I mean, I've had more doctors, nurses, physiotherapists, massage therapists, psychologists, specialists know all my personal information than my family and friends do!

so more about me and God's plan for me so far? here we go!

5 random facts! 

1) I was born in Canada and I still live here working as a live in assistant for 6 people with developmental/learning disabilities

2) my parents are both atheists and really really don't like that I am a Christian, a Bible carrying 5 point Calvinist Christian. WOW that is quite a contrast now that I look at it in print Praise God, God is so good to little bad sinful me to pour His grace upon grace into my little life. I pray that I will always glorify Him in my choices, I have made many mistakes in my life and will continue to but I always own up to them, no matter how difficult it is.

3) I was born with a really rare birth defect, I am random by choice but rare by birth. I'm the girl that, at the hospital, had all the docs and medical students coming in at all hours of the day or night to talk about my case, in front of me, like I was a peice of meat on display at the butchers (maybe that is why I don't like meat lol) that is one of the reasons I guard my privacy so highly now. I still have other docs trying to sit in on appointments I have with specialists, but I turf them all out now that I am old enough to have a voice.  Psalm 139:13-16 is a very precious reminder for me to praise Him in all that I am, even in this.

13 For you formed my inward parts;
you knitted me together in my mother's womb.
14 I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.

ESV bible Psalm 139:13-16

4) I didn't really start reading the bible seriously until about 6 months ago. I have always had one since I became a Christian but they have always been borrowed,  on November 11th, 2008 I received my very first bible that was all mine, I won't lie, I bawled like a baby to have that book in my hands, God has brought me so far.

5) I have pink hair, not all of it is pink but I have a few stripes in my brown hair. I really adore bright pink. When I was in High School, quite some time ago, I was a goth, the only colour in my wardrobe was black but today I am all about bright colours. I just looked down and giggled though because today I AM wearing mostly black.

Hopefully I will continue to grow in the love and grace of the Lord.  

Soli Deo Gloria