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

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

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

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!

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.

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

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

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