Chronicals of a chronically random girl

Flare squared

2011-11-16T18:44:00.001-05:00

This is the third day of a particulary bad flare and I'm finding it hard to cope and hold on to hope. Last night I was having the worst Thunderclap headache attacks (kindof like clusters but usually are singular) and today I was/am afraid to move too much incase they come back.I just got up to make an omelette and now I'm exhausted again. I don't know how I can survive many more days like this. At least when I lived with other people , I'd occasionally see another person. I don't know where I'm going with this, I just find it's sometimes good to get things out into the world, sometimes it makes things better to write them out.How do you deal with a flare when you are stuck in bed with way too much and fatigue?I guess one thing that is good is that I have a lot of time to pray.Soli Deo GloriaREformed girlflares

RIP Alexa Simmons, real friend.

2011-10-09T19:49:00.001-04:00

I have been blindsided by the death of a very good friend. Now some might not consider Alexa to be my "real" friend as I knew her only on the Internet but I feel her loss just as much as if she lived down the street from me. She was an amazing light in this world, she was so very positive even when her situation seemed impossibly difficult. Alexei had a rare illness called Ehlers-Danlos syndrome. There needs to be more research into EDS so that beautiful, wonderful, joyful, sarcastic, love to laugh girls that are only aged 22 don't die. PERIOD!
Alexa Simmons you will be missed by many many many friends and family members who will keep a little piece of you in their hearts for the rest of their lives, allowing you to live on through each of us since you were taken so young.
God must have needed you, but it's hard to accept that and not ask why.
Soli Deo Gloria
reformed girl

Modest Monday

2011-10-03T14:35:00.003-04:00

I thought on this modest Monday, as I'm trying to get back into the swing of blogging,that I would explain to you why I choose to wear modest clothes. Why I choose modesty.
I feel better when I'm covered. End of statement. when I see people having to pull up shirts that are riding low or pants that are riding low for that matter, I feel comfortable in what I wear. Having sensory issues means that I wear a lot of dresses, skirts, jumpers which make me feel more feminine but which mostly I wear because I hate pants.
A second good reason why I choose to wear modest clothes is because I believe it's my responsibility to my brothers in Christ that I not tempt them into lustful thoughts. I don't claim to be any great beauty! I am definitely not! But I feel like it's my duty to protect the minds and hearts of my brothers and hope that they would do the same for me.
I feel good when I'm covered. You can still wear pretty clothes and have pretty things and be modest. Putting a tank top under a low cut shirt or making sure that your undergarments don't show are little things that I choose to do to make modern clothes more modest.
I'm sure that there are other reasons, which I will talk live on another modest Monday! Thanks for letting me back into the blogging world and I hope to continue blogging.
Soli Deo Gloria
REformed Girl

moving, moving , moving

2011-10-03T13:32:00.003-04:00

I've been moving around a lot. I don't mean physically, bodily moving around. I mean physically 1000 boxes, rental vans moving around.
at the beginning of May, I made the hard decisions that I needed to move and that I needed to move away from the town I had been living in for the past 10 years because for me, living there and not being able to work, was starting to make me really feel like I didn't have any worth. Plus my best friend at the time was mad at me, I'm not really sure why still but I think it worked out for the best. God was working in my life.
I found a new place, it seemed to be perfect, it was a basement apartment that was very low ceiling and it was set up perfectly for a little person like myself. The landlord even put the shelves on top of each other instead of overt top of the counter so that I could reach all the cupboard space. It was within walking distance of the grocery store, the pharmacy, my new dentist and my new church. I thought things were perfect. Well I had been looking for this place I had been trying to get into my Aunt's building, but there had been no vacancies. Unfortunately, I'm sure you picked it up by all the past tense, the apartment wasn't as perfect as I thought it was. There was flooding, one of the two postmarks sized windows had to be covered at all times so I had very little light, and there were several types of mold and a white crystalline from fungus in the closet. The first time it flooded was because I had moved the plywood off of the second window because I did not know why it was there. The landlord tried to tell me he did not know that there was going to be a flooding issue and that it hadn't flooded in the spring but I find that hard to believe because how else would he'd known to have blocked the window. He promised to fix it, but nothing is getting done.
At a doctor's appointment, I had mentioned that there was mold in my environment, and my doctor told me I should not live in an environment like that with my compromised immune system and the fact that I only have one and a half long capacity instead of the average two. So I called my landlord and gave my notice. It was very hard for me to do that because I don't like feeling like I'm letting people down.
I was away for two weeks and when I came back the apartment had flooded again even with the board being left on the window! My mattress is ruined but hopefully the landlord is taken care of that! He promised that he would now I'm just having to be patient and wait for him to get back to me.
The good news in all this kerfuffle is that I put in an application to my Aunt's buildingand got a beautiful bachelor's apartment on the ninth floor. I guess you can say I'm on cloud nine. If I weren't so exhausted! I am slowly unpacking and hope to have my first visitors this weekend as it is Canadian Thanksgiving.
In God's timing, things worked out perfectly, I believe he gave me this experience so that I can trust in him more deeply that He will take care of me and all my needs and I pray that I can be a blessing to someone in this building.
so this Thanksgiving I'm thankful to be in the house that doesn't leak! And I think my cats are too!
Happy Thanksgiving! What are you thankful for?
Soli Deo Gloria
REformed Girl

freedom

2011-10-03T13:19:00.003-04:00

I've recently been on a journey. On a journey with a good friend of mine, a person I call my sister whom I've known for a very long time. I have been helping her with an exciting journey although I times it has been scary, seemed like it was never going to end, tence, and frightening.
My friend has an illness named Crohn's disease, Crohn's is an autoimmune condition where your body essentially attacks your intestines/colon causing embarrassing symptoms like excess gas and diarrhea. My friend was essentially trapped in her bathroom, and she couldn't go out, couldn't do any errands or things that most people take for granted that you're going to be able to do. Having a chronic illness myself I can understand how she feels but I feel I've had more freedom than she has had.
But that has all changed.
I recently went and spent two weeks in hospital with my friend, slept at her side. It was a strange occurrence to be in the hospital but not IN the hospital. I was glad I could offer comfort, distraction and entertainment in equal portions. I was stalwartly waiting with herfor her to be free.
My friend had surgery on September 17 aafter every other option to treat the Crohn's had failed. During the surgery I helped take to her stuffed animal named Ginger and cried quite a few tears and prayed quite a few prayers that she would come through the surgery and be offered the freedom that we hoped would happen from this surgery.
When you're chronically ill, sometimes it's fun to name your mobility aids, wheelchair, catheter, ileostomy or colostomy bag.
Meet Rebecca, she is my friend's new partner in crime, partner in freedom. Rebecca and her purse ( my friend"s ileostomy) are beginning to offer my friend freedom.
It's hard to put into words how this freedom affects me, how it affects my heart, how it affects how we'll be able to be together, and all the things it affects in her life. Rebecca brought hope. Rebecca brought freedom. Rebecca brought a new sense of one's self of one's body and ownership of that body.
I am on a journey. We are on a journey. Hopefully it's a long one filled with hope and freedom from bondage. My heart is light when I think of how much this is changing my best friend's life and how brave she is, and how wonderful she is, and how strong she is. She is my inspiration, my partner in crime, the person who knows me better than I know myself, my worst enemy *smiles* and my best ally.
I love U. sissy, thank you for letting me be a part of your freedom and thank you for letting me write about it here to share your freedom with others.
Soli Deo Gloria
REformed girl

'nuff said

2011-04-13T16:56:00.003-04:00

Hello Friends!
I nhave been away on holiday, visiting friends, its been very busy but I hope to be able to post more details in the coming week. I just felt like I should share this verse for some reason and I sincerely hope that this verse will be soothing balm to the hurting heart of a person with chronic or dabilitating illness. We have all been there. Reach out! You aren't alone. We're not alone.

In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, 7 so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. 8 Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, 9 obtaining the outcome of your faith, the salvation of your souls. 1Peter 1:6-9 ESV STUDY BIBLE.

'nuff said.
In Christ's love,
REformed girl

Fibro...a pain in the...EVERYWHERE!

2011-04-04T18:20:00.002-04:00

FIBROMYALGIA

Fog
Irritable bowel syndrome
Balance
Restlessness
Oppressive
Muscle spasms
Yawning
Agitation
Lack of appetite
Grieving
Incessant pain
Anxiety

Sincere
Understanding
Resourceful
Valiant
Inspirational
Versatile
Outstanding
Remarkable

For all the fierce fibro fighters!
Soli Deo Gloria
REformed Girl

Is help a four letter word?

2011-04-03T20:46:00.004-04:00

This is my entry for the PFAM blog Carnival that is hosted this time by the good folks at Possibilism. The subject is "Is help a four letter word?" which is a really good thought provoking topic that I've thought about for several days. This mess below is what I came up with! Sorry if it's a little choppy! I'm having a wicked bad week with cognitive functioning.

asking for help.

I have a hard time asking for help, in previous years I found this task inconceivably hard. My parents have raised me since birth to act, behave and look like a "normal" person. I wasn't given an IEP (individualized education plan) for my vision or learning disabilities, it was not discussed. I was raised to be secretive and ashamed of having a chronic illness or disability. I do not blame my parents, they did the best they could with the limited educational/financial/spiritual resources they had. they raised me to be fiercely independent, to climb on things to reach since I was so short. If it took me 45 minutes to make my bed, that was ok because I was doing it myself. If my siblings BEGGED to help me with it so that we could all go onto bigger and better things like swimming or shopping. The answer was always no, that I had to do it myself because my brother and sister weren't going to move in with me when I was older to do it for me. it was independence at all costs.

no wonder why I feel so stricken to have to ask for help. It's like all my families conditioning, all their expectations of me is being let down because I have failed at being a completely independent woman.

I love to help people, it's my joy to help others and I feel like that is a major reason why God created me. It fills me with such joy. It makes me sad that I can't do as much helping as I used to be able to.

When I was lamenting to a wise friend of mine about how nice it would be to be able to ask and receive help but that I couldn't bring myself to do it.

She said I was robbing someone of the chance to be a blessing to me.

At first when she said it, I got very defensive but the more I thought and prayed about it, I knew she was right. I was preventing someone from having that same feeling by helping me.

Someone once said I was "God with skin on" when I helped them and that phrase has stuck in my head ever since. We are the hands and feet of God and everything we do should be for the Glory of God.

here is a poem about the subject of being the hands and feet of Christ...

a prayer of St.Teresa of Avila
Christ has no body now but yours,
No hands, no feet, on earth but yours.
Your are the eyes through which He looks
Compassion on this world
Yours are the feet
With which He walks to do good.
Your are the hands
With which He blesses all the world
Yours are the hands, yours are the feet.
Yours are the eyes, you are His body.
Christ has no body now but yours,
No hands, no feet on earth but yours
Yours are the eyes, through which He Looks
compassion on the world.
Christ has no body now on earth but yours.

So my dear brothers and sisters with chronic illness/pain, when you need help, please do not feel ashamed or embarrassed. You are allowing God to bless you and show His love to you.

SO is help a four letter word? yep, you bet! but LOVE is also...

Soli Deo Gloria
REformed girl

Things that bug me when I'm out and about

2011-03-26T14:53:00.002-04:00

I just thought I'd vent for a moment to myself and any poor human who comes across this, about how people (strangers) treat me when I'm out and about. Like a lot of spoonies, I don't leave my house as much as I did before I got sick. I tend to compile a list of things I have to do and make a battle plan like I'm invading France of what order of stores to go in, what can be at the bottom of the list incase I run out of steam, where to stop and rest, bathroom & snack breaks. When people are being annoying it can turn my proud moment of being out into a dreaded day of social torture.

Here are some examples:
-when people cross the street so they don't have to walk by you (especially when using a mobility aide!
- when random people ask "what's wrong with you?" gruffly as if it is their right to have full disclosure of my medical needs! I do not mind when people ask questions when they are respectful.
-telling your kids not to stare when you have been staring harder then they have
-grabbing your children from my path when I'm like 8 feet away! Like I would "sully" your child with my gimptastic germs and make them into a gimp too!!! I wonder how you act around gay people!! *eyeroll* I generally don't make a habit of running into people, especially children but I may be tempted by you, watch it!
-when people are patronizing because of my height (which is a massive 4'11"!!) or using me as a leaning post because I'm below your elbow, apart from being incredibly annoying, it hurts so much that I think really evil thoughts of you at that moment.
- I don't mind people reaching up on shelves to get me something and I have no problems with asking people passing by for a hand, but you my super zealous friend, who follows after me down every aisle to be helpful,( honestly it's creepy not helpful) and practically (as well as occasionally for real) knock me over in your exuberance to help. I really appreciate it but I can talk and ask for help if I need it. Also to that person, please don't get offended when you offer to help and I say no, im gonna use the professional breakup letdown, it's not you, it's me! Sometimes I just want to reclaim some independence I have lost, or know I CAN do it. So much gets taken out of my hands with this illness, sometimes I just need the control of doing it myself.
- staring when I get up because you didn't know I was disabled (I'm sorry! I must have left my neon "HEY! I'M A DISABLED CHICK WITH A CHRONIC ILLNESS" in my other jeans!!
-being told I'm too young/pretty/nice/creative to have an illness will not make it go away.
- I actually had someone ask if my crutches were real or just a fashion statement.....seriously? 'nuf said!
Whew I feel better! I always try to remember that people just want to help or they haven't met anyone with a disability in their life.

Lupus love

2011-03-25T23:24:00.003-04:00

This is my lupus poem for all my Lupie friends. I don't have lupus but I know many awesome peeps who do!

Lovable
Unbeatable
Phenomenal
United
Sisters

Fearless
Indestructible
Gentle
Helpful
Tough
Educated
Rare

Love y'all!
Soli Deo Gloria
REformed girl

Fighting flame

2011-03-21T01:08:00.001-04:00

I just wrote this poem tonight, it kinda raw but I thought I'd post it and if it helps one person then I will be very happy.

Like hungry flames
pain laps at my soul
Not to be tamed
Inextinguishable

I lay curled and alone
In my silent hell
Answers unknown
Torture I can't quell

There is such anger
Never there before
Sadness will linger
My willpower's tore

I don't know how many
Tears I have cried
Pleaded for any
Treatments I'd try

Pain gets worse
When you are alone
Stuck with this curse
With my cries and moans

I'm not who I used to be
And I never will be again
It's so crushing to see
The loss of a friend

I miss the old me
I smiled, I laughed
The ability to be carefree
And not feel so trapped

The pain is a bully
Scaring friends away
Who don't understand fully
That I have to stay

I have no choice
I cannot leave
I have no voice
And no reprieve

I can't think through pain
And feel so stupid
Acting insane
Looking so vapid

It's like a dense fog
Has captured my essence
Mired in a bog
Permanent convalescents

The good thing about a fire
Is it dies itself out
But not on this pyre
It's not it's route

It sears and burns
Licking ravenously
For freedom I yearn
From blazing ceaselessly

How will I go on
What will I do
Most friends are gone
Any boyfriends are too

Who would want this
To live in this inferno
To jump into the abyss
To burn eternal

If I had the decision
To stay here or run
From a caregiver's mission
Or having some fun

I wouldn't choose me
So I don't blame them
I'd follow the lead
Of self saving men

Maybe some day
I'll figure this out
There may be a way
My mind's cluttered with doubt

If we find a way
To conquer this flame
We'll have a lot to say
And never be the same.

Now I curl inward
And wait for sleep
Pray to the Lord
Its my only release

In dreams I can move
Outside of the flames
Grace to prove
And thoughts of fame

I can flit and fly
And dance quiet sweetly
In the alabaster sky
Looping tightly

I feel so free
In dreams like these
I feel like me
No monster to appease

But my eyes flutter open
I'm back again
To the land of hoping
For an end to pain

Like hungry flames
pain laps at my soul
Not to be tamed
Inextinguishable

Written by me on march 20th 2011 from 11pm-1am

I told you I was bad at this blogging thing!

2011-03-08T21:35:00.003-05:00

hello friends!
I'm sorry that I've failed epically about writing my blog but I'm hoping to get back into it.
According to my day plan it's TECHY TUESDAY!! So I'm to share about a website I like or a gadget I love or want to try out.
Today I'd like to talk about my iPad! I really really REALLY like my iPad!! The things I find useful about it is that the keyboard on the touchscreen requires very little pressure which is good when my hands are sore. There are some awesome health apps (applications) that I use:
mymedical is a medical archiving app where you can store everything from current and past medications, test results, manage scheduling for docs appts, document allergies and unsuccessful meds

pillboxie which is for meds and gives you an alarm to remind you to take your meds, normally I don't need this because I'm used to taking meds since I've been taking many of them since I was 12 (20 years ago, man I feel old!) but I am really really REALLY bad at taking my nighty injection (which is weird since I've taken it from age 4-16 and then 28 to now so you'd think I'd remember) so it's been a great reminder. it's very easy to use and was developed by a RN.

Relaxing Ambiance lite is a free app that has relaxing music but the function I like best is there is a mixer soundboard where you can create your own version of ambient music, my fav combo is thunderstorm, rain and wind chimes and it has a timer so my ipad isn't running all night.

As far as games go I have lots of drawing apps, two fav music apps are smule magic piano which lets you play piano with people from around the world or just by yourself and Soundrop which is a cool app where this ball drops and you create lines and when the ball hits the lines it makes different notes, ok that one is hard to explain but I think if you look there is a free version to try called Soundrop lite.

I love my kindle app because I love reading and I love that you can make the font very large and make it white writing on black which is really helpful with my learning disability.

I also enjoy listening to audiobooks on my iPad and have downloaded a few movies when they were on sale for $4.99 like Annie and RENT.

So that's my techy tuesday, I know there are more benefits of my iPad but I can't think of anymore at this time!! Brainfooooog! I need a lighthouse! If I think of anymore I will put them in the comments!
God bless you!
ChroniclyRandom

my absence, October 04th, 2010

2010-10-04T17:09:00.003-04:00

Sorry I've not been posting, my housemate and one of my best friends was getting ready for major surgery today and I was spending the weekend with her. She just got out of surgery, she was in from 9am to 4pm and is now in her room. Hearing her voice was the best gift ever!
Praise God, You are so very good! Thank you for guiding her to very talented and patient, hard working doctors, Thank You for the skills you have given them!
I've been bawling and worried and emotional and going on 1/2 hour sleep last night, so it's safe to say I'm a bit unworried about daily posting, I will, however, try to post backlogs now that the crisis is over.
Please continue to pray that she does well and that the staff are filled with compassion, grace, care and strength. Give her comfort Lord, I just cannot praise You enough!
Soli Deo Gloria
REformed girl

October 1st, 2010

2010-10-01T22:30:00.003-04:00

Fiesta Chicken (or Tofu)
1 teaspoon olive oil
2 boneless skinless chicken breast (or firm cubed tofu, or you could use steak)cubed
1 green or red pepper, diced
3 green onions, chopped
1 can of tomato soup and 1 can water (you can use canned diced tomatoes if tomato soup has gluten in it and you are GF)
1 cup salsa (I like mild Pace brand salsa)
1 can corn
cooked rice
shredded old white cheddar (or other cheese) to taste

1) saute chicken, peppers and onions in olive oil in a large skillet until cooked
2) add salsa and tomato soup with water and canned corn, simmer for 10 minutes
3) put some rice in a shallow bowl, add fiesta chicken on top
4) add as much or as little cheese on top as you'd like!
5) enjoy the party in your mouth! FIESTA!!

Happy eating!
God you are so good to nourish our souls and give us strength, joy and love. Thank you so much much for our farmers and our food!
Soli Deo Gloria
REformed Girl

Sept 30th, 2010

2010-09-30T15:57:00.003-04:00

Hello dear readers,
First of all, I'd like to ask you once again to pray with me, my friend Christopher is moving today, I hope that his move goes well and everything goes smoothly, I hope God gives him and his former roomate grace as they say goodbye. I pray that the family who is welcoming Christopher is warm, gracious and welcoming!

Thankful Thursday!
It just occurred to me that I don't have to write everything I'm thankful for, that would take a very long time to write, and for you to read!!
- I'm thankful for modern medical science, for the meds who keep me going, or mostly going!! lol
- for being a creative person, having a creative outlet

This is a creative pic of my meds that I take in a week, using my two things I'm thankful about together today! :)

What are you thankful for?
Have a thankful day!
Soli Deo Gloria
REformed Girl

Sept 29th, 2010

2010-09-29T22:07:00.002-04:00

today's post for "weakling Wednesday" is going to be a short one as I am stressed up to my EYEBALLS!
- I am being audited by the federal government because of my medical claims in the past year because this is the first year I have claimed my medical expenses. I just didn't know I could up til last year. so all my time is currently towards that, getting letters and documents from doctors, and they (the government) only gives you a MONTH to send in your receipts! Do they NOT know that doctors NEVER work that quickly. I wrote the letters for my General Practitioner as I have been asking for a letter to claim the patient conventions I do to since last spring!
- I have a docs appt tomorrow and my OT is coming with me, she (the OT) doesn't understand that I feel like crap most of the time and she's been harping on me to "get out of the house" more often, easier said than frikken done! I look fine therefore I must feel fine, I wish it worked like that! *sigh* she wants me to go back to work as a volunteer but I know that is codewords for "we wanna send your butt back to work since you've been off for almost a year" but nothing has changed since last year. I still have WILDLY unregulated sleep schedules, pain and fatigue. If I could go back to work, I would! I'd gladly trade this stoopid body and jump back in. My heart hurts, I miss it so much!
- my housemate is having surgery (to remove a throat tumour)on Monday in the city near here, but it's far enough away that I will probably have to stay home and won't know how she is doing. I'm beyond anxious about it!! I'd rather have surgeries than watch someone else! please pray for her, the doc and me and her daughter!

ok back to work on taxes!!
Soli Deo Gloria
REformed girl

Techy Tuesday, Sept 28/10

2010-09-28T19:30:00.002-04:00

dearest friends,
I'm not feeling so great today so I'll just leave this nugget of wisdom with you! lol! This website www.vat19.com never fails to make me giggle. Happy Shopping!

Soli Deo Gloria
REformed girl

ways to help challenge

2010-09-28T01:33:00.004-04:00

I have a blog post I am going to write about how I feel about big faceless businesses profiting from breast cancer awareness month by selling their wares and donating minimal profits.
What I would like is an idea of ways we can support our sisters (and brothers)who have or had breast cancer, please add yours in the comments and I'll put them in the blog post!

I have a few in mind
- donate to local breast cancer group
- make a meal or several frozen meals to take over
- hug a survivor and tell them how important they are
- volunteer to drive patients to their appointments
- send a card, knowing people care, helps

I also would like you all to comment on some of the most wacked out Pinktober products you've seen! I bought MUSHROOMS the other day in a pink container with ribbons on it, kinda rediculous! they didn't taste any better!

so help me add the lists (ways to help and wacky products) and I'll write the completed blogpost address in the end of the comments when I am finished writing said article, probably next week or two since I want as many people to participate as possible!

Thanks
Soli Deo Gloria
REformed girl

Modest Monday (sept 27th, 2010)

2010-09-27T10:00:00.001-04:00

Welcome to modest monday September the 27th of 2010!
First of all I'd like to explain what my version of modesty is because it seems like everyone's view on this subject is different. If I know I'm going to be in mixed company (boys and girls) then I tend to dress a bit more conservatively. If I am at home, I don't really have any modesty rules, as long as I'm planning to stay in the house, I wear what is comfortable, especially in hot weather. When going out I follow these simple guidelines:
- Skirts, dresses, pants and shorts all reach my knee or longer, I have one skirt that is a bit shorter but I wear legging capris with it. I generally wear bicycle shorts or capri tights underneath dresses and skirts because you never know when you are going to get "Marilyn Monroe"d by the wind
- If in mixed company or going to church, shirts need to have sleeves. Not be lowcut/revealing, elsewear I feel comfortable wearing wide strapped tank tops.
- Shirts are thankfully longer styles these days but I don't wear anything that can reveal my midrif (hee hee it's full of wholes from my injections so no one wants to see it anyway!)
- If I can't breathe, I don't wear it! I hate tight clothing!!
So this red dress is a new one I got from a store called Dynamite, it's made of super comfortable jogging suit type material but has a nice shape to it. I don't mind things that show a bit of my form as long as it's not too tight. I really like this dress and I'm glad I bought it, it's a bit more expensive then I would normally buy, it was $42. I always look for a new dress for Christmas time and I think I've found it early!!
The neck is called a cowl neck, I like it much better than turtlenecks!
Have a great monday!!
Soli Deo Gloria
REformed girl

Welcome to the first Sacred Sunday!

2010-09-26T17:52:00.002-04:00

Hi dearest friends and readers,
Welcome to the very first Sacred Sunday of my blog! Today I'm just going to put up a verse for you to read and think about, it's a popular one that many of you will know. Over the next few Sundays I will be doing something kindof unique with this bible verse, it's something we used to do at my old church. Breaking apart the parable and making a story about what it was like from the point of view of several different people within the story.

I would also ask my dear brothers and sisters who pray if you would pray for some of the following with me, if you can only spare a moment and pick one, that would be great, I know many of you have busy schedules!
I would like help to pray for the following:
- for my many lovely friends who have chronic illness and pain, that God would give them Grace to sustain them, strength to fortify them, joy, peace and love as their backbone
- for my friend Christopher who is moving house under stressful and unique circumstances, that God would give him patience, strength and help him to find a new church family.
- for Christopher's friend Tim who is very ill at the moment and ask that God be also with his wife and 4 children
- for all the refugees of the world who are displaced and without a home, that God would help them find joy in the rubble and help to lighten the load of burden they are carrying
- for strength of will to follow God's path, even where it may separate from my own path

here is the story of the Prodigal Son Luke 15: 11-31 ESV study bible

The Parable of the Prodigal Son

11 And he said, “There was a man who had two sons. 12 And the younger of them said to his father, ‘Father, give me the share of property that is coming to me.’ And he divided his property between them. 13 Not many days later, the younger son gathered all he had and took a journey into a far country, and there he squandered his property in reckless living. 14 And when he had spent everything, a severe famine arose in that country, and he began to be in need. 15 So he went and hired himself out to [2] one of the citizens of that country, who sent him into his fields to feed pigs. 16 And he was longing to be fed with the pods that the pigs ate, and no one gave him anything.

17 “But when he came to himself, he said, ‘How many of my father's hired servants have more than enough bread, but I perish here with hunger! 18 I will arise and go to my father, and I will say to him, “Father, I have sinned against heaven and before you. 19 I am no longer worthy to be called your son. Treat me as one of your hired servants.”’ 20 And he arose and came to his father. But while he was still a long way off, his father saw him and felt compassion, and ran and embraced him and kissed him. 21 And the son said to him, ‘Father, I have sinned against heaven and before you. I am no longer worthy to be called your son.’ [3] 22 But the father said to his servants, [4] ‘Bring quickly the best robe, and put it on him, and put a ring on his hand, and shoes on his feet. 23 And bring the fattened calf and kill it, and let us eat and celebrate. 24 For this my son was dead, and is alive again; he was lost, and is found.’ And they began to celebrate.

25 “Now his older son was in the field, and as he came and drew near to the house, he heard music and dancing. 26 And he called one of the servants and asked what these things meant. 27 And he said to him, ‘Your brother has come, and your father has killed the fattened calf, because he has received him back safe and sound.’ 28 But he was angry and refused to go in. His father came out and entreated him, 29 but he answered his father, ‘Look, these many years I have served you, and I never disobeyed your command, yet you never gave me a young goat, that I might celebrate with my friends. 30 But when this son of yours came, who has devoured your property with prostitutes, you killed the fattened calf for him!’ 31 And he said to him, ‘Son, you are always with me, and all that is mine is yours. 32 It was fitting to celebrate and be glad, for this your brother was dead, and is alive; he was lost, and is found.’”

Thanks be to God!
Soli Deo Gloria
REformed girl

Welcome to the first sinful Saturday!

2010-09-25T18:59:00.000-04:00

Well so today is Sinful Saturday, a day where I speak about something I need to change in my life or that I don't like about the world. It's easy for me to start by nitpicking about the world. It's easier to not admit my brokenness and imperfections but how will that help me to grow?

I know I'm not perfect, far from it, have been reminded of it daily from myself or others. I grew up being told I was a burden, a nothing, it's hard to not let those thoughts stick.
So the thing I would like to confess is that I swear, not a lot but more than I need to. IT's unladylike, uncouth and brass. In some situations there is no other word that will work like letting out the F bomb but I'm gonna try to do it less.
Do you still consider it swearing if you use another word? like one of my favorites is bullpoopie
Now please don't get me wrong, I am doing this personally for myself and don't expect or request that anyone else stop swearing, this is a no judgement zone!
Thank you for listening.
Soli Deo Gloria
REformed girl

Welcome to the first Foodie Friday!

2010-09-24T10:00:00.001-04:00

I love spinach!! I love veggies! I don't really have to force myself to eat it but when I read Tiffany and Lupus' blog then it just made it that much more enticing! So here is my favorite salad!!

2 cups baby Spinach
(TIP: if you buy the plastic containers of spinach where water tends to condensate on the container and make your spinach go bad, just put a folded papertowel or cotton cloth in on the top and wipe down the sides when the water builds up)
1 teaspoon (or more to taste) honeydijon salad dressing (I use president's choice but I think craft makes one too)
2 green onions, sliced
4-5 medium mushrooms (or canned if you prefer), washed and sliced
1 chicken breast (you can substitute or add real bacon bits instead)
1/2 teaspoon of olive (or other) oil

1) saute the onions and mushrooms in the oil in a medium frying pan
2) grill (or fry) the chicken breast until cooked (I like to use my George Foreman grill) diced
3) mix the spinach and the dressing and put it in a shallow bowl, add the sauted veggies and chicken on top and enjoy!

Happy Eating!!
Soli Deo Gloria
REformed Girl

WARNING: If you have an anti-coagulating disorder and/or take coumadin or warfarin, please talk to your doc before eating any veggies with Vitamin K!

Welcome to the first Thankful Thursday!

2010-09-23T22:14:00.002-04:00

hello dearest readers!
Did you think I forgot? Today was a bit of an off kilter kind of day, I slept through my alarm and missed a meeting this morning, I didn't wake up til noon so my meds were WAY off all day and I can't get out of bed until I've had my meds in my system for 1 hour so I didn't get out of bed til one and so it kindof threw me off. but anyway...TODAY is THANKFUL thursday!!
I'm thankful for:
- new hair styles and wearing makeup just because I feel like it, even though I'm not going anywhere
- family and friends, especially my interwebs friends who support me so well even though they don't know me in "real life"
- being stuck in my kitten's cute rays
- GLee!
- I'm excited for a BIG production for Christmas called 4 tickets to Christmas where we get to dress up in period costumes from the early 1900s!!
- updating my blog, feeling really accomplished about it, I hope I'll be able to keep it up!
- comfy clothes
- pretty things
- cool breezes playing over my face in the night when I'm in bed

12 Put on then, as God's chosen ones, holy and beloved, compassionate hearts, kindness, humility, meekness, and patience, 13 bearing with one another and, if one has a complaint against another, forgiving each other; as the Lord has forgiven you, so you also must forgive. 14 And above all these put on love, which binds everything together in perfect harmony. 15 And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful. 16 Let the word of Christ dwell in you richly, teaching and admonishing one another in all wisdom, singing psalms and hymns and spiritual songs, with thankfulness in your hearts to God. 17 And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him. Colossians 3:12-17

What are you thankful for?

Soli Deo Gloria
REformed Girl

Welcome to the first Weakling Wednesday!

2010-09-22T17:44:00.002-04:00

I know none of us are weaklings but we need to have a place to talk about things that have happened in the past week. I hope that you will join me by posting in the comments, I really do hate to complain but sometimes I think it's ok if there are supportive people around who "Get it", that's one of the reasons this blog is anon so I can feel free without worrying about retribution from "friends" and family that aren't as supportive.
ok here goes!
* I'm being audited by the federal government because of what I claimed on my medical expenses last year which means I have to get letters from two docs and I have to do it all in less than 30 days.
* I feel like my threshold for pain keeps lowering, bad days are leaving me in tears, wearing down my resistance, I am taking more pain meds than ever before with less effect.
* I'm nervous about my docs appt at the end of the month, my OT is coming with me but she's trying to get me to go back to work, part time volunteering and I didn't expect that. my life has no pattern, I cannot predict from one day to the next how the next day is going to be
* I have a whole bunch of phone calls to make but I usually remember to make them after the businesses have closed for the day
* the big cahoona from my work wants to meet with me to talk about in what ways I can be involved with work people while being on medical leave, most of the people on medical leave from my profession are on medical leave because they are burnt out and stressed, I am not those things, I love what I do and WANT to be involved, I'm just at the mercy of my body when it comes to planning things. and if I DON'T listen to my body then I pay BIG TIME
*I'm very tired and have to go to choir practice and I KNOW I'm gonna get upset if the choir mistress gives me a hard time for missing Sunday, I just couldn't move Sunday morning! Sometimes I wonder whether it would be better for me to quit but I really do enjoy it and some weeks it's my only outings on Wed night for practice and (most) Sundays for church.

That's all I have to say at the moment :)
What about you?

Soli Deo Gloria (to God alone be the Glory)
REformed girl

Welcome to the first technical Tuesday!

2010-09-21T17:36:00.003-04:00

Ok I have to, have to, have to share my all time favorite chronic illness website! I know many of you will know it but I have to write it because there might be someone who doesn't know about it yet!
www.butyoudontlooksick.com! Please take a moment to read the "spoon theory" which was one young lady's (her name is Christine Miserandino Donato) way of explaining to her healthy friend what it is like to live day-in day-out with a chronic illness.
There are also forums at the website that is a community where people can "meet" other people with the same or similiar conditions, it's really great to reach out to my other rare disease friends!
Have a great Tuesday and see ya tomorrow!
God bless you and keep you
REformed girl

more structure and more blogging! here i come!

2010-09-20T19:46:00.001-04:00

Dearest readers

Now is the time. This girl is getting a little less a random, and a little more structured. Now that I have my voice dictation program on my new computer I have no reason not to blog every day. I've recently been inspired by a fragile Annie's blog which you can find by clicking here. She has different topics for every day of the week and I really like that idea.

So here goes, here's my new list of topics, and I'm imagining that all also have some randomness thrown in here or there for good measure. After all my name is chronically random!

I've decided that Monday's topic will be either modesty Monday or media Monday depending on my mood. For modesty Monday I will review one of my outfits and why I choose to wear modest clothing. On media Monday as the I will show you a song or a clip or a video of something that makes me smile or think.

Tuesday will be technical Tuesdays, I will either share at Tech Tip, a website that I love, which includes organizations and causes that I believe strongly in.

Wednesday's I have decided it will be weakling Wednesdays, this is where I (and hopefully you!) Will be able to rant about things that have annoyed us during the week, pet peeves and the like. We all need to have a safe place where we can talk about things that bother us. It's not really weakling Wednesday, none of us are weaklings!

To counteract Wednesday's topic I've decided that Thursday's topic will be called thankful Thursdays, this is where I (and hopefully you!) We'll talk about what we're thankful for, what we've enjoyed reading the week and things that make life better.

Friday, will be foodie Friday since I love to cook and share recipes! I have a wide variety of meals that I enjoy cooking, different styles and I'll always give ways that you can make cooking easier and save those spoons!

I'm far from perfect so I've decided that Saturday will be a day to confess things I don't like about myself or things that I don't like about the world, I like to call it sinful Saturday.

Sunday of course is a day of rest, but on that day I would like to share with you some of my favorite quotes from wise people, some quotes from the Bible and quotes from religious people.

So that is the plan, I will of course add my own random style and will probably add rants and stuff along the way!
I hope you enjoy this blog and my new structure! I'm really excited about it!!

Hoping you are well,
REformed anon girl

Butterfly

2010-09-12T23:05:00.004-04:00

Butterfly

Pretty ballerina
Dance around the room
Dazzling smile of joy
Safe in your cocoon

Nothing can hurt you
When you are in your dance
Pretty little butterfly
Not going to take a chance

You live a safe life, my child
Not what I intended
Where is your fire?
How soon it ended…

Pretty butterfly
All without a song
Someone's clipped your wings
You feel you don't belong

Dance dance my lovely
Ever whirling colour
Mask your brokeness
Show only power

You live a safe life, my child
Not what I intended
Where is your trust?
How soon it ended…

The powerful will fall
In their castles and city
Your brokenness made whole
Is how you'll show pity

Pretty butterfly
Do a little dance
Unfold your wings
Now's the time for chance

See the butterfly
Dance in the street
Dance to the little ones
Who have nothing to eat

Smart butterfly
Learning from the poor
Using suffering and love
To guide to heaven's door

Oh butterfly
See what you miss
When you think of selfish gain
You find, I will persist

Sell everything you own
Come and follow me
Words that changed the butterfly
Spoken by the man from Gallillee

You live a safe life my child
Not what I intended
Where is your servant heart?
How soon it ended…

Pretty butterfly
Caught in a wind
Wonder where you'll go
Please trade in your sin

I love you butterfly
You've always been mine
I created the dance
I created time

You live a full life, my child
Just what I intended
I see your fire
Only I will end it

On that day I end it
On the day you die
Come live with me forever
My beloved butterfly

uninvited

2010-09-12T22:30:00.002-04:00

I was very devistated about things that have been happening in my life with my employer, you see I have been on medical leave for almost a year (not exactly) and feel very much the "congrats! you are a worthless non conritbuting member of society! let me get you your 400 lbs of stupid forms to fill out where the designated place to write on the form is so small only Tinkerbell herself would write teeny enough.
Ok, I work for a particilar organization that is a really beautiful mandates missions and all there Eutopian ideas that they forget the "little guys". It's a high paced environment and we oft have people on temporary medical leave of absence to retreat and reacharge. When someone has that need, because we are used to giving so much of themselves that it is totally acceptable and after the person's welcomed back with open arms and very touchy-feeling support. I think that is great but my organization needs to get better at dealing which someone who has chronic physical limitations from chronic illness, you would think, that because we live so deeply together, that THEY SUCK AT IT!!

I go to every community event even though it may cost me the spoons for the next few days but seeing the joy of the people with disabilities i support, to hang out with new friends and assistants and get to know the new people in my community.

|I do hope that they get better at doing all this because although I may be the first assistant on medical leave that are not due to stress, they need to do better at treating me with respect.

This weekend my whole community when on our annual retreat, I was not asked to come, not invited, negatory, I haven't miss this retreat in 11 years. I was crushed! and worst of all, they just automatically voluntold my roomate (who works with the same lovely but #$$# up organization) to tell me I can't go. I couldn't go because I might be a liability because I'm sick, that's total and utter bollocks! The kicker was I wasn't allowed to go but one of the assistant's Gay Boyfriend was allowed to go.
I love the retreat because our whole community gets together, has fun, talent shows, small groups and it's a really great time to get to know others that you don't see very often.

Here is my feeling:
I was welcomed into a family, a family that promotes diversity, accountability and hopes to help people learn and be wise though the teachings of the people we support

I got sick, still running full speed. I tried really hard to keep up and do what I needed to do, even though it caused me so much tears and pain to do some of the simplest tasks like folding laundry.

I'm sick, I need to leave as much as I don't want to! I'm not quiting! I'm not dissatisfied with what I do, my body is physically not letting me! I want to scream because people always assume that you go on sick leave for mental stress. mine is just because my health is falling around me, crumbling like when a sandcaste meets the tide.

I am essentially kicked out of my community, barred, uninvited, abandoned, over something I have absolutly no control over!

Someone at the office said I need to call them to chat, what did I do now?! I'm not even working but I'm always in shit. yay for stress, it's really gonna be even greater for my health.

People can be so mean sometimes, unfeeling, I think others should experience so they will know how better to treat someone with an invisible illness/disability.

Praying things get sorted out and I can get less angry and people stop disinviting me!
God Bless you all!
REformed Anon Girl

the Thursday Thwarting

2010-09-09T11:49:00.002-04:00

I am sooooo beyond frustrated at the moment!!
So this morning after my needles (there were 2, it was epic) in my eyeball I go downstairs to our friendly neighbourhood bloodlab to see the vampyres.

Frustration #1: There were a bazillion people who had been waiting a bazillion years to have their bloodwork, there were 2 lab techs but only one was drawing blood (hee hee drawing makes me envision them with crayolas and sketchpads sitting crosslegged on the floor at their victims feet saying "I'm going to draw your blood now, where's my red?") and the other was doing paperwork, which I understand, but there were big gaps of time where she could have been taking blood too!

Frustration #2: They got all the papers mixed up so some people who had just got there got to go ahead of people who had been waiting more than an hour! I just doing think that is fair. I do think that if someone has a fear of needles (like the one younger girl in there obviously did because she was pale and sweaty and looked like she wanted to run screaming away from the room!) that they shouldn't be made to wait so that their anxiety reaches a level that is hard to come down from.
Sidenote: I have friends who take Growth Hormone injections daily who are afraid of getting labs done, one big 6'6" guy has to lay down! it's much different having someone else in control of the needle when you are used to it being you!

Frustration #3: I know my body, that isn't my frustration, I know how it works, which veins are good and which veins merely have their makeup on so they look presentable but are really weak little things that'll cave at the drop of a hat! (they are the Paris Hilton of veins) My favorite tech is there but of course I get "new girl", lets just say I don't warm up well to "new girls" in the lab. I tell the tech, the vein you want is the one right under this freckle here, joking about how x marks the spot and whatnot. I say the one on the outside left looks promising but it'll collapse faster than you can say "boo". Which one does she pick? OUTSIDE LEFT!
aw hell......I wait, she gets some blood going and sycophantically (yes I DID just make up that word) says "see? it's working...nothing to worry about dear" which makes me want to shove her crayolas up her....ahem....anyway. 1/2 way into the first and teeniest vial it starts to sputter....sputter....sputter. grrr!

Why. do. medical. people. not. listen. and. seem. to. think. they. know. my. body. better. than. I. do?

I'm angry, we finally got the blood but I'm angry that people don't listen. I'm angry because they never listen. I'm angry because she had to route around and now I'm gonna have a gihugic bruise on my arm. I'm angry that because I look young, that people can disregard what I say and think they can do whatever the hell they want with my body!

My record number of sticks in one sitting is 26, they finally put it in the top of my head, I was 7. It was totally traumatizing, that is why I KNOW which veins to use! JUST LISTEN TO ME PEOPLE!

What's your record?

30 Things About My Invisible Illness You May Not Know for ii10!

2010-08-20T20:48:00.006-04:00

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Septo Optic Dysplasia with congenital Panhypopituitarism, high functioning Autism (now called Asperger's) Fibromyalgia, Neuropathy, Trigeminal Neuralgia, Anemia
2. I was diagnosed with it in the year: 1982, chronic pain conditions since 2009, anemia one month ago
3. But I had symptoms since: birth, chronic pain since 3 years ago,
4. The biggest adjustment I’ve had to make is: I'm fortunate that I've grown up this way so it's pretty normal for me, it's hard to pace myself when I'm used to doing as much as I want to do
5. Most people assume: that I'm using crutches because I sprained something
6. The hardest part about mornings are: the whole thing!! I'm very stiff and sore and have a hard time getting out of bed but need to because I have to have breakfast to take my morning meds by 8am
7. My favorite medical TV show is: Mystery Diagnosis/House (I don't really watch much TV)
8. A gadget I couldn’t live without is: my Eeepc and iPod touch, perfect when I'm having a day where I'm stuck in bed
9. The hardest part about nights are: trying to sleep with pain which always seems worse when there is nothing to occupy my mind
10. Each day I take 20 pills & vitamins. 1 injection and biweekly patches (No comments, please)
11. Regarding alternative treatments I: will try anything a few times, I have tried cranio-sacral osteopathy, acupuncture, massage (yay), chiro for the chronic pain. I cannot do alternative treatments for the pituitary issues as that would endanger my life.
12. If I had to choose between an invisible illness or visible I would choose: I use crutches so mine is visible at the moment. I don't really mind, sometimes people get confused when I'm using them one day and not another, my arms are affected too so somedays using the crutches is more painful than helpful, I tend to not go far from home on those days!
13. Regarding working and career: I've been on medical leave from a job I love very much, being a live in caregiver for 6 awesome people with developmental disabilities. If I can't return to work I will volunteer when possible! I just wish it was settled instead of being in limbo!
14. People would be surprised to know: I'm stubbornly independent
15. The hardest thing to accept about my new reality has been: asking for and receiving help
16. Something I never thought I could do with my illness that I did was: travel alone!
17. The commercials about my illness: drive me insane, the fibro one makes me wanna throw things at my TV! there are no commercials about my rare illness
18. Something I really miss doing since I was diagnosed is: washing my hair without pain
19. It was really hard to have to give up: working
20. A new hobby I have taken up since my diagnosis is: sewing
21. If I could have one day of feeling normal again I would: normal what's that? never been normal, sounds boring!
22. My illness has taught me: to rely on God, to reach out to others, to be patient
23. Want to know a secret? One thing people say that gets under my skin is: you're too young to be disabled!
24. But I love it when people: compliment my crutch artwork
25. My favorite motto, scripture, quote that gets me through tough times is: "3 More than that, we rejoice in our sufferings, knowing that suffering produces endurance, 4 and endurance produces character, and character produces hope, 5 and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us." Romans 5:3-5
26. When someone is diagnosed I’d like to tell them: they aren't alone
27. Something that has surprised me about living with an illness is: life goes on, fun times can be had!
28. The nicest thing someone did for me when I wasn’t feeling well was: brought me chocolate and a "greatest grandma" balloon while I was in the hospital! hee hee hee got a lot of looks and second takes from nurses lol
29. I’m involved with Invisible Illness Week because: it's good to be connected and not feel alone
30. The fact that you read this list makes me feel: honoured and empowered, thank you!

psalm 42 and a worrywart! (ME)

2010-08-16T20:48:00.002-04:00

Why are you cast down, O my soul,
and why are you in turmoil within me?
Hope in God; for I shall again praise him,
my salvation [12] 6 and my God.
Psalm 42:5

This was a good reminder to me in my daily readings today. I've been so worried about my mom but I know (or should know I chastise myself) that God has a plan.
I don't know whether to have tentative hope for my mother, she called both of my older siblings yesterday out of the blue, she never calls anyone! And she sounded sober.....maybe this is the catalyst she needed. I said today, I don't care if I ever talk to her again, if that is what she needs to stop slowly killing herself, then I have to be ok with that. But I really hope that is not the case because I miss her very much but want her to be well. I have to look after me right now and trust that maybe, just maybe, she is getting what she needs.

Soli Deo Gloria
REformed anon girl
ChroniclyRandom

diagnoses(es es essss)

2010-08-15T14:23:00.006-04:00

I know a lot of my new spoonie friends on twitter have been curious about my diagnoses(es es es lol) and I haven't talked about it before, one component is because what I have is rare, that if you know me through other modes of social networking that you will be able to figure out who I am and I really value my privacy and safety of being anon on this blog. I don't mind so much that people know who I am but that this link could get into the hands of my family or people that I don't necessarily want to read or can't handle my honesty. So if this post helps you unravel the mystery of my identity, feel free to tell me but keep it to yourself otherwise. :) thanks! I know I'm weird about this but I want to be able to write what I want to without people I care about getting mad at me for being honest.
here goes! Welcome to the wonderful wacky unregulated world of ME!

Ok first of all I was born a medical zebra, my parents and docs didn't figure out my stripes until I was around 4. I was born with a brain birth defect that is very rare. Basically in utero things got a little sketchy when my brain was developing and some things didn't develop and somethings developed in the wrong spot! oops! It's called Septo Optic Dysplasia (sometimes known as Optic nerve hypoplasia or De Morsier's syndrome depending on where you live, just to make things a bit more confusing eh? lol) and basically it affected 3 things in the development of my brain.

1) my right optic nerve is severed and growing through my pituitary (see 3) which means I am blind in my right eye. That eye turns inward (called strabismis) and I had it corrected when I was 4 and now that it's turning in again I get botox injections in my eyeball 4x a year as opposed to major surgery. It's a vain thing but I'm a girl and it makes me feel better about myself and my appearance.
2) my septum pelucidum (the midline of your brain in lamens terms) has a hole in it, they aren't quite sure what the SP does exactly but it helps the right and left brain talk to each other and is probably why I was diagnosed with High Functioning Autism (now I'm being told they don't call it that anymore, it's Asperger's syndrome) and I have learning disabilities (mild dyslexia and moderate dyscalculia) which means sometimes letters are backwards for me, if I get really tired I read books upside down!! it's a fun parlour trick and I love to read!! I am super bad at basic maths, I am thankful for calculators which I use often, for some reason I love triganomitry (sp?) and other maths that are more complex.
3) my pituitary (which is in the base of your brain encased in bone because it's the master gland of all your hormones and glands) doesn't work because of the silly optic nerve running through it. So I have to replace all my hormones synthetically, which is not only expensive but annoying too! All my glands work but they don't recieve signals from my pituitary to turn off and on.

things I have to replace because my pit doesn't work:
-->I've replaced my growth hormone (made by the pit) since I was 4 by injection and I still take it today as it is important for many more functions (muscle mass, blood lipid balance, psychological wellbeing, mental acuteness, cognitive function etc etc) than just linear growth. When I first started taking GH it was from the pituitaries of cadavers before the biosynthetic was made available, so technically I am an organ recipient and therefore can't give blood.
Lack of GH also causes low muscle tone so sometimes it looks as if my head is on sideways because my head gets too heavy for my neck! lol
--> I have Addison's disease because my pit doesn't produce ACTH (adrenocorticotropic hormone) so my adrenals don't work. I take steroids (prednisone or cortisone) 3 times a day to mimic what my adrenals would put out on their own. When I get sick I have to double or triple my dose because that is what your body would do on its own. You need corticosteroids to regulate your blood pressure and bloodsugars. If I get sick, I get sick very quickly and severely, even with just a common cold. I have injectable meds to get me to the hospital if I can't keep my meds down. I'm generally hospitalized for IV fluids and steroids if I am vomiting, so I avoid barfing at all costs!!
--> I have hypothyroidism because my pit doesn't produce TSH (Thyroid Stimulating Hormone) your thyroid regulates your metabolism and when my med levels are off makes me fatigued, makes my skin dry and my hair fall out.
--> I don't make any female hormones (FSH- Follicle stim hormone and LH Leutinising Hormone) so I take meds for that too, I also take these meds because my bones are crap from longterm steroid use and you need them to properly absorb calcium and vitamin D

My hypothalamus doesn't work very well most of the time either, it's kindof weird, sometimes it works, sometimes not so much!
-->I get easily cold or hot and can't regulate my body temp, but I don't sweat so I often can potentially overheat if I am not careful, sometimes I run fevers that are aweful because I essentially have to have an icebath to cool myself down.
-->I go for stretches of time where I am not hungry or I am ravenously hungry. I have no thirst receptor, so I have to make sure I drink enough fluids.
--> I can go for days without sleeping, it's horrible but I just can't sleep but now thanks to my awesome new doc I am on twice the maximum dose of sleepmeds which actually makes me sleep and I can get up and function, though not too early in the morning! If I know I have to get up early I go to bed and take my meds early or I just skip a night. I really do feel better now that I'm getting sleep at night.

SEIZURES- I don't have grandmal seizures anymore (praise God) and haven't had one in 15 years. I do have petitmal and absence seizures but they aren't a big deal at all. Flashing light will trigger a seizure or chain of seizures for me. I also have myoclonic jerks or sleepstarts where I almost get to sleep and my whole body tenses up like I've just been startled really badly. Can you say TRES annoying!

HEIGHT- I am a little person, I'm under 4'10" and love being little. I think it's easier for a girl to be an LP than a guy to be one.

AUTISM- I was diagnosed with High Functioning Autism which is now generally called Asperger's Syndrome. I have a hard time with certain textures both in clothes and in food which can easily be avoided. I don't like loud noises and will often wear earplugs to the movies because the volume is too high. I don't have many of the social issues my other friends with AS have, I think that I've just learned tips and tricks and cope. I rarely will look people in the eye but generally you can't tell because I pretend to! hee hee fooled you! I looked at your nose or forehead instead! :)

ALOPECIA - No one knows why but I have something called cyclical alopecia where my hair falls out (worse than when my thyroid meds are too low) and I get bald spots. Normally because of this I keep my hair fairly short because I never know when it's gonna happen and pulling out handfuls of your hair is disconcerting , to say the least! but I'm in a good patch! My hair is super long for me because my brother asked me to grow it for his wedding last year and so I did. I had a really bad case of my hair falling out just before the wedding and I was so upset!! My brother then said the sweetest thing "I don't care if you come bald! as long as your there!" but the hairdressers did a great job and you couldn't even tell I had 2 bald spots about the size of a twoonie!

As if all that fun-ness and chronic awesomeness wasn't enough, I have chronic pain issues. when I was younger the docs just said it was growing pains, when I stopped growing and still had them they called it Idiopathic Chronic Pain Syndrome. Now I believe that it was juvenile fibromyalgia all along. I would just have pain a few times a week, it would start with a sharp pain in my ankle and then it would move to my ankle and knee and then til my whole leg was affected. Advil sometimes helped, so did rubbing my legs together like a cricket or having a scalding bath.

3 years ago I broke my hand very badly and that started a domino affect of chronic pain which is where I'm at today. So far I've been diagnosed with 3 chronic pain issues:
--> Trigeminal Neuralgia which is a pinched nerve in the side of my face, for most people it presents as sharp debilitating pain, but since most of my body is atypical mine only presents that way occaisionally, mostly it comes in the form of feeling like a fish hook has been implanted on the left side of my brain and someone is yanking it up every so often, I get very dizzy and have been known to fall over, which is generally bad for people with osteoperosis! lol
--> Neuropathy which is nerve pain, mostly it feels like my feet are being dipped in boiling hot battery acid, sounds fun eh?
--> and last but not least fibromyalgia which is the biggest bugger of all, what they think happens is people with fibro, after and infection/illness or injury (such as my case) that the persons pain receptors in their brain go haywire and end up telling the person they are in pain constantly when they are physically not. SO I am on a combo of Antidepressants to try to stop this pain but they aren't working yet, not found the right cocktail.

It's very hard to get a diagnosis for anything when you have a rare illness/pituitary problems because docs will try to automatically lump your symptoms into what diagnoseses that you already have, but the blessing in having panhypopitarism (the fancy word for a useless pituitary) is that you get to know your body VERY intimately and you know when something is wrong. I can often tell if my med levels are off, just by how I'm feeling, whether my hair is faling out, if I'm fatigued etc etc.

So there you have it! The blessing in this is I believe chronic illness has made me a more persistant, compassionate, caring person and some of the friends I've made because of chronic illness are some of the nicest, most generous, couragous blessings I've ever met.
Thank you God!

Soli Deo Gloria
REformed anon girl

what a mess!

2010-08-13T20:05:00.002-04:00

My mom is an alcoholic, she always has been, she quit once for 2 months and I didn't recognise this awake alive person before me, my mum and I have always been beyond close, I've seen her at her worst when my father first left and my older sibs were gone to school. She's a functional drunk, she gets up, goes to work, and her father was an alcoholic before her. *sigh* so somehow that's made it ok.
I feel like the world's worst daughter but she was so drunk last night, I was trying to get her to go to bed because I knew she would try to have a cigarette while she was half asleep and I've always been afraid of her burning herself (which she has) the couch (which she has) or the house down. She got really beligerant with me. One of the things that has frustrated me to no end is that when my sister or brother are around, my mum tries to keep her drinking to a minimum, but they have families, I don't have a family or a spouse to impress so she doesn't even attempt to be somewhat sober when I come to visit, I feel like a second class citizen in my own family. I don't matter enough.

So last night I wrote her a note when I went to bed and left today before she got home from work saying that I wouldn't be able to visit anymore for a while as I can't watch her slowly kill herself. I was supposed to go this weekend when my sis and nephew and neice were going down to visit mum but I emailed my sis and just explained what had happened and she was super supportive.

I've never fought with my mom, I've always put up with her sh*t, over and over and over again no matter how much she abuses me verbally. I feel so bad for just leaving her a note, I'm so anxious about how she is doing with it, I feel bad for my pa (my stepdad) because he'll probably get the brunt of her wrath. We had a chat this morning because I was crying when I came downstairs (I didn't know he was home) and he started crying when I said that I wasn't going to come visit for a while. I feel so bad. I feel so anxious because I don;t know what is happening. I feel like a rotten person.

But the more I stress, the sicker I get and I'm already dealing with so much, I really didn't need this on top of everything else! I really hope that it might be the catalyst for her to get some help but I'm realistic enough to know it probably won't.

Please pray for me, pray for my mum, pray for my pa, pray for my sis who's gonna be stuck in the middle (I hope not!)

I love my mum, I just don't always like her very much.

Soli Deo Gloria
REformed anon girl
ChroniclyRandom

2010-08-06T12:20:00.001-04:00

eye candy - entitled Sparkly shoes and rainbow mobility aids

a poem-like substance

2010-08-06T11:38:00.002-04:00

I wrote this poem last night, when I write most of my poetry when I am unable to sleep because of pain and well, just being me. Hope you enjoy! it is Untitled as all my poems are. here goes!

In dreams.....
Pretty little girl
White dress seems to glow
Against verdant meadows
Brown eyes like a doe

head back laughing
She skips and dances
Eyes so sparkling
With the world's chances

She's so beautiful
Like a swirling butterfly
She sings like a bird
Up to the blue sky

She can do anything
Limitless possibility
So very strong
No such fragility

In reality.....

Pretty little girl
Blue hospital gown
Pale against bleached sheets
Brown eyes cast down

Head back in rest
She secretly dreams
Of where she's free
Instead of ripping at the seems

She's so beautiful
Bravely she fights
Not afraid of anything
Except the lonely nights

She needs help with everything
Struggling with possibility
Of a future stuck and mired
In limitless fragility

As she wins this time
She earns another try
Lips upturn in a smile
Another chance to fly

This has taught her
Love and passion
Enchanting butterfly
Soaring with compassion

Sickness touched her life
Now she helps others
Her companions in arms
Sisters and brothers

Helping to build
A shelter, a community
Where everyone fights together
We help each other be free

Look at the butterflies
See how the dance
A rainbow of colour
Brought together by chance

good newzes

2010-07-30T12:08:00.003-04:00

I had a good day on Wednesday! I was still in pain but I didn't use my crutches because my arms where more sore than my legs and it would have hurt more to walk with them then without (hence the need to beg my doc for a scooter or electric chair because my arms can't push a manual chair)

I also have good news about my financial security, thank you to all of you who have been praying! I'll recap for any new friends, I used to work a full time job when I first got chronic 24/7 pain for a bout 2 years but I found that the fatique from not sleeping, the fatigue from working and the pain were just too much and I had to swallow my pride and admit defeat and go on medical leave.'ve been on medical leave since last fall and haven't had an income since March! Thankfully I am blessed that I had some money saved up so that I didn't go too far into debt. I just got approved for my long term disability through my work. I am hoping that maybe if I find a specialist that knows anything that I may be able to go back to work. I'm in a bit of a hard spot though, I can't work full time healthwise and I can't work part time and pay for my meds!! arg! fun times!! I have faith that it'll get all worked out!

I got to go out last night to my favorite store FABRICLAND and the girl there told me how to make a super cheap dressform! yay! I need to start working on my sister's wedding dress that I am making!!

I also got to chat with one of my friends on facebook last night too! It's awesome how much we have in common and how we could just prattle from one comment to the next! The conversation was great! :)

Sorry this is just a rambling post! I just wanted to let everyone know I'm alive and well and in a much better space!

Soli Deo Gloria
REformed annon girl

PS o hai to all my new twitter friends!! :) welcome to my little corner of randomness!

to feel or not to feel

2010-07-29T05:11:00.003-04:00

I am hoping that by writing this out maybe I can let it go.

I met a really great guy Dec 2008 and we started dating online as he was in Virginia and I am in Canada, we had the same belief system, we had so much in common, we were head over heals in love, we spoke about marriage, I'd never felt this way about any other man. He knew about all my health issues and said it would be an honour to "take care of me" and he promised to do just that. I was so happy!

He left for a mission's trip, I wished I could go with him, I talked about how great that would be to experience, to serve but with my health and lack of an immune system, it would most likely mean serious illness or death for me.

When he was on his missions trip, we still managed to talk everyday in video chat even though it either meant he would have to stay up late or I would have to. We were both willingly sacrificing and everything was going great....or so I thought.

Shortly before he was supposed to come back to North America he said he'd been thinking and had decided we shouldn't date anymore because he didn't want to work with people with disabilities (which is my vocation) and that he was planning to go back to South Africa again after he came home for a month or two to renew his work visa. For one thing, I told him I have never heard of couples HAVING to have the same profession. And he never went back to South Africa, although it was a convenient excuse.

He dumped me, after saying he loved me, after promising he'd take care of me, after me always being comepletely transparent about my health needs, because I'm sick. This man who claims to be such a great mature Christian can't even tell me the real reason he dumped me, so I know that is it.

I thought I'd finally found someone to love me, I've always been broken, I thought I found someone who admired the cracks that let the light shine in but apparently I was very very wrong and so what I'm faced with is that I've never been easy to love and I don't think I ever will find someone who can love me. I think he's ruined me because I was so stupid to trust him. I don't understand why I'm still so broken about this. it's been a year, I should be over it, but I'm not. Because I believed him.....lesson learned. My hearts been superglued so many times I don't even carry it around with me somedays, it's easier not to feel.

I don't know if I feel any better but I'm gonna click on submit anyway.
Soli Deo Gloria
REformed girl

fruit and despair

2010-07-29T03:03:00.002-04:00

It's 3am as I write this propped up on pillows in the bed that I'm currently waging war against. I've been trying to sleep for 4 hours, I've managed 40 minutes.
So here I sit, eating tender juicy peach slices that just yesterday were bought from the grocers as seriously hard lumps like rocks that were masquerading as peaches. It's amazing what one day will do to a peach, it that not true of people too? I have had the pleasure to mentor and see many young people grow into stronger, gentler, calmer, more humble versions of the anxious, overrought, gonna-fix-everyone people that they came as when just joining our community and just beginning to support people with developmental disabilities. They were unripened peaches when they came and they transformed into delightful fruit to nourish others in their journey of life. What a wonderous gift that I have been witness too!!
So I sit here, like a queen surrounded by pillows eating ripe peaches.....the thoughts that come unbiden into ones head in the ugly hours of an unrestful night seem to bruise the fragile peach skin of my psyche. Ugly thoughts that I seem to have to swat away and away like so many fruitflies.....sometimes swatting sucessfully, other times settling into remorse and dispair.

Will I ever be better?
Will I be able to return to the job I love to do?
How will I pay for my meds?
I'm too fat!
How can I loose weight without exercising because I can't really exercise healthwise?
Should I even worry about my weight? Who cares anyway? I have no one to impress!
I have no one.....no one......why am I still here? Why don't I put everyone else out of their misery of having to see me suffer (though I try hard to put on a happy face) instead of being so selfish? Wouldn't it be easier for everyone if I was dead? Do I really have a purpose? Can anyone truly love me? Are all the people who said with their actions and words that I'm unlovable, loathesome, detestable, unwanted right? Can I really have a life when at least a few of my days a week I'm bedridden or can't leave my house due to pain? Do I keep up the facade of being normal until I crack? What is the point? Should I keep fighting when all my doctors have put me in the box of being a "rarity" from birth and therefore already bruised fruit?

Should I keep this bruised fruit, hoping that some peice of it will be good enough to eat?

Then hope hits me for a brief moment in my despair, in my lament about how bad my fruit is, there is always the pit, plant a new tree, work on a new plan with God, for God and try not to forget it came from bruised fruit.

I'm feeling very bruised tonight. I'm just so alone, even surrounded by others, I have good friends but good friends don't cut it when you've always been told that's all you'll be to anyone.

no one wants me, no one wants the bruised fruit.
God help me.

Soli Deo Gloria
REformed girl

Twitter

2010-07-28T14:56:00.003-04:00

I thought I'd join the newest craze so I got myself a shiny new Twitter account, for those of you who so desire to read the random musings of my ooh so random mind, feel free to click on to the link to the right!!
WARNING: for those of you who know my real true identity, please keep it to yourself whilst responding to this blog so my secrecy is intacked! thanks so much!

I will blog more soon, as I have a brand new little Eeepc laptop which is lighter and weighs a lot less than a traditional laptop so therefore is much less painful for me!! yay!!

May God bless you all!
REformed girl

2010-07-18T21:28:00.002-04:00

Hi friends,
I'm currently on vacation visiting my brother and his family. He and his wife just had a baby boy June 24. My brother also has a 5 year old from a previous relationship who is visiting this week too (normally he lives with his mommy) as well.
I'm back on narcotics as pain relief, I don't like this situation much but I was very thankful for them yesterday when we went to the waterpark and I spent 2 hours splashing around with the kids (the 5 year old nephew who is my brother's son and my nephew who is 13 and niece who is 10 who are my sister's kids) and not worrying about being in too much pain, even with the activity my pain was only at a 4 or 5 instead of it's usual 8 out of 10. I have payed for it a bit today but it was fun once again being the "fun aunt" I used to be before my health declined.

So I'm at my brother's and I have to say it's pretty awesome being able to play chutes and ladders all day with a 5 year old and being able to hold a brand new baby too!
Happy Sunday!
Soli Deo Gloria
REformed girl

sleep

2010-07-15T21:02:00.002-04:00

oh my!! last night I didn't sleep! not one moment!! not even with my usually useful sleep meds. I only got 3 hours the night before so I got up this morning at 7am and did a load of laundry and once I had put it outside on the line (we don't have a dryer, nor do we want one) I went to bed til one o'clock this afternoon.
I hope I sleep tonight!
I'm thankful for good friends who are also insomniacs who kept me company last night.
I hope they sleep tonight too!
Goodnight!
Soli Deo Gloria
REformed girl

the reinvention of me

2010-07-14T22:53:00.003-04:00

So it's been really hard for me the past few months, I had to stop working in October due to my health and my profession (as an assistant who cares for and supports 6 people with developmental disabilities in a live in capacity, kind of what I would assume is similar to a housewife but with pay, reportedly not a well-paying job for the amount of work required but something I can throw my heart into as I have no family of my own) was my life and my everything. I have been pleasantly surprised with just how much the people I work with (both the clients and the staff) have become my family of sorts. I have remained a close and respected member of the household, I visit often but I miss them all terribly and the loss of my identity has remained like a steady toothache (or maybe I should compare it, more appropriately, to my chronic pain which is always with me) so that I find myself reinvented.

So what am I?

A Christian, a sister, a daughter, a friend, an enemy, an old woman, a lover, an artist, a strong woman, a weak person, extraordinary, a person who is disabled, not neurotypical, a craftsperson, a child, a smile, a ?, ordinary

beautiful

broken

His.

Soli Deo Gloria

REformed anon girl

baby's back!

2010-07-13T22:47:00.002-04:00

just wanting to let y'all know in cyberland that I'm back!

a few weeks ago I lost an entire week because of a medication reaction but during my brief lucid moments, I remembered and thought fondly of this blog and decided it was time to get back on this horse. I can't possibly update you as to what has gone on in the past few months/year but I'll do what I can to fill in some gaps tomorrow and for the coming weeks.

Thanks for your continued prayers, my fine friends.
Soli Deo Gloria
REformed anon girl in pain

pray

2009-07-15T00:05:00.001-04:00

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

invisible

2009-06-01T18:32:00.001-04:00

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

i hath returned!

2009-05-26T14:35:00.001-04:00

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!

hints of springishness

2009-04-16T00:21:00.003-04:00

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

a bad blogger I be!

2009-04-07T12:29:00.002-04:00

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

step from the darkness

2009-03-31T12:55:00.003-04:00

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.

I luv Spurgeon!

2009-03-24T19:06:00.000-04:00

Ripples

2009-03-09T12:06:00.004-04:00

"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

Disability and God by Joni

2009-03-02T18:22:00.003-05:00

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

a day of celebration and community!

2009-02-28T15:47:00.004-05:00

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

World Rare Disease Day website
rarediseaseday.org

LOVE by Cirque

2009-02-25T03:36:00.000-05:00

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!

travels and trials

2009-02-24T14:24:00.002-05:00

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

bad body/good books

2009-02-16T22:16:00.002-05:00

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

2009-02-16T00:04:00.002-05:00

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

Jesus loves you, hurry up!

2009-02-15T00:00:00.000-05:00

"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

Daisies

2009-02-14T00:00:00.001-05:00

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

Love

2009-02-13T12:14:00.004-05:00

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!

Friends and their working dogs

2009-02-09T03:05:00.006-05:00

proud frontline worker

2009-02-07T12:47:00.005-05:00

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?

2009-02-07T12:29:00.002-05:00

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

tall kids and short me

2009-02-05T22:09:00.000-05:00

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

bring on the rain

2009-02-03T10:38:00.002-05:00

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

plans.......

2009-01-30T18:04:00.002-05:00

*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

2009-01-28T01:00:00.001-05:00

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

2009-01-27T08:52:00.002-05:00

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

2009-01-14T22:00:00.000-05:00

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

2009-01-08T12:42:00.004-05:00

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!

2009-01-07T20:02:00.001-05:00

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!

2009-01-06T19:46:00.006-05:00

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

2009-01-04T23:18:00.000-05:00

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

Goodbye 2008

2008-12-31T04:07:00.002-05:00

so it is time again to bid farewell to another year gone.

People are stocking their bars, and planning their resolutions as we speak.

New Years is a time to begin again and start fresh on a clean slate. It's a time when, at least here, there is white pure snow on the ground to symbolize our fresh start.

New Years is also a time for countdowns and so here is mine from the year 2008 in random order and random thought process, from my own random life and the world...... because....well....I'm RANDOM!

I always start with the bad news because it reminds me that I end up happy :)

5 bad things of 2008 according to moi

- the Lakeland "revival" - I am personally so glad it's over, I mean that much heresy in one state should be illegal even in our crazy world. well that and I got tired of people telling me to go there to get healed, did you ever notice that people are happy to tell you where to go get healed but they don't give you the money to do it. So I am supposed to combine the "miracle" of extra cash to throw around with the "miracle" of hedonistic prayer "revivals"...........oh I am getting so sick just thinking about it.......I think my lunch just made a revival.

- the brutal murder of Brent Martin, a man with a developmental disability who was killed in the UK by three teens who just wanted to "practise" and show off their newly learned boxing skills. I'd like to "practise" shooting them out of a cannon.

- my chronic pain got worse and ....well.....chronic. I learned much about the uncaring, unprofessional, unintellegent medical profession and their incompetencies

- Robert Latimer, a man who killed his daughter who had Cerebral Palsy was released from jail after only serving partial sentencing for the 1993 crime, I wonder if he would have recieved so short a sentence if he had murdered a "normal" child...oh and the wonderful icing on the cake is that he now lives in my province!! too close! too close! run away Robby, buh and bye!

- my dear sweet friend Bernie passed away in the spring, she was as much a mystery in life as her death was. I miss you Bernie Balogna

5 good things of 2008 according to moi

- people are still having babies with downs syndrome, at the beginning of this year all signs pointed to an annihilation of people with Downs through genetically creating designer babies, but it didn't happen and that signifies hope for me that somehow, somewhere, people are getting the message that life is precious and so is difference.

- I started to read the bible more fervently and actually bought my very first study bible!! wow I feel so growned up!!

- I won a contest, for a video I entered, at a chronic illness community website that I belong to and I was in several radio shows speaking about the important topic of patient advocacy

- the disability world came together to support protests about the horrible language and degredation of people with developmental disabilities in the movie tropic thunder, it was a huge movement and it was very exciting to see so many mobilized.

- I spoke at a national convention in Chicago in July and I was even payed to be there! It was very exciting for me to speak with other parents who have little children diagnosed with the same thing I have.

All together it has been a great year and I can see many ways that the Father is drawing me closer to Him. God is good!

It is my sincere hope that your new year is filled with joy, happiness and a little hardship to help you appreciate the good times that much more.

Soli Deo Gloria.

Censored

2008-12-29T13:45:00.003-05:00

I hate being censored.

I find a lot of people with disabilities are censored.

I find a lot of wemen in pain are censored, told it's hysteria.

I am a generally positive person but occassionally when life gets the best of me and I can't take it anymore, I say how I am feeling.

A problem arose this week when my status in the social networking site called facebook said " _____ is in a lot of pain tonight :("

one of my friends (I will not say who, she is a friend I met on the internet and maybe doesn't know me very well) sent me a message saying I could complain about ANYTHING other than disability or pain related. I know she was just trying to help me be positive but sometimes people need to be allowed to feel bad. sometimes people just need to be able to cry and have someone hold their hand, whether physically or cyberly.

So the next time that someone tells you they are feeling bad, even if they have been feeling bad for a long time, just trust them and sympathise and ask if there is anything that you can do for them.

We all know the message of Job and how harsh his friends and wife were.

don't be like them

I am sure I will have more to say about this but that is all I wanna say at the moment.

Soli Deo Gloria

Regret

2008-12-27T16:34:00.003-05:00

"Bitterness and regret are habitual disabilities that reinforce themselves, they take moments and twist them into horrible shapes, they take expectations and form them into threats, they feed on fear and feast on terror."

This is from a favorite blog that I read called Chewing the Fat by David Hingsburger that I wanted to share.

I have been facing some of my own regrets myself this week and although they were not made by anyone but me, it is very disabling to not be able to move out of fear of more regrets.

SO I am disabled in more ways than one, but at least this one I can do something about.

I intend to pray and read my bible and grow as a person from this week and it's upsets (again made by me) and to see all the beautiful things that are around me.

There are so many great things happening in my life, I am dating a wonderful guy that I totally do not deserve. I can only say that it was God that brought us together and nothing that we did or deserve! Praise God!

I had 2 hours pain free on Christmas day as well, that was a beautiful present. You know how you get a gift that is really precious and maybe down the road it breaks or gets misplaced or stolen, you still have the memory of it and that is how I feel about my good moments, they are treasures from God.

I have such good and understanding friends and I am a very thankful girl, I try to be always and I hope it shows.

Soli Deo Gloria

Christmas is alive!

2008-12-26T15:11:00.003-05:00

I meant to write this earlier and didn't.

I wasn't going to because Christmas is "over" (well not really in my opinion)

but then I keep thinking about it, so maybe it is my push to write it. Sometimes I need a big push but God is faithful.

Seasons Greetings, Happy Holidays, Merry Festivus, Happy day-off-work.

Sometimes I think Christmas is not alive in our secular world, it is alive in my heart and in the hearts of many of our lives but not "out there".

but maybe I am wrong..........

In the past week leading up to Christmas, I have seen signs in major stores saying "Merry Christmas", I have heard cashiers say "Merry Christmas" as I leave. I have heard "Merry Christmas" from other shoppers if I happen to bump into them or vice versa (I am not very graceful walking at times) even radio announcers have been heard to say "Merry Christmas".

not Seasons Greetings, Happy Holidays, Merry Festivus, Happy day-off-work.

Christmas is alive in my town. Is it in yours?

Soli Deo Gloria

Unexpected blessings

2008-12-26T15:02:00.003-05:00

I got a wonderful unexpected gift yesterday.

As many of you will know, I have chronic pain, well yesterday I was going around the corner in my town from my friends house to my own because I had forgotten something.

As a person with chronic pain, I can sometimes semi-tune out my pain, it's still there but it isn't the forefront of my mind, but it's always there and I always feel it.

Yesterday I was going back to my home to get a Christmas music CD I wanted to share, then as I got to my door I noticed my gift.

I had no pain.

NONE!

WOW! Praise God for that wonderful Christmas gift!! I was pain free for almost 2 hours, I dunno why, but I don't need to know. It was not an anonamous gift.

I think the memory of those 2 hours of unrestricted movement and playing with my friend's children will stay with me for sometime.

I am not upset to be in pain again as you might think. With a small break, I can endure and perservere, as long as God is by my side, I will never fear.

I hope you had a blessed and wonderful Christmas time with friends and family.

Merry Christmas!

Soli Deo Gloria

Merry CHRISTmas!

2008-12-25T03:02:00.002-05:00

Merry Christmas! I hope the wonder of the infant saviour's birth fills you with joy!

I have been taking a blog holiday but hope to be back posting daily soon.

Warmest wishes to you and your family.

Soli Deo Gloria

2008-12-19T08:38:00.003-05:00

I will be away this weekend.

I didn't want any of my friends who read this blog to worry that I was laying in a ditch somewhere! :)

Just a quick note:

I am astounded by the grace upon grace that is pouring into my life from God. Yes, I am still sick. Yes, I am still disabled. I have just been experiencing something that could only be planned by God.

I will try to write while I am away and maybe I will be able to post multiple entries upon my return.

Have a blessed weekend!

Soli Deo Gloria

2008-12-17T13:41:00.002-05:00

"Walking with a friend in the dark is better than walking alone in the light."
- Helen Keller

I am just feeling thankful for good friends. I had really messed up with a friend of mine this week and in the midst of my talking to him about it, he sent this quote to me. I feel blessed and joyful to feel forgiveness and love from people.

I haven't always experienced love in my life and it seems a bit foreign to me, but I am learning.

God loves me so much to send me so many good friends who help and strengthen and put up with me!

I am indeed a joyful girl today. I am thankful you are here with me, reading my words. They aren't much and they sure are random but I am hoping that you get something out of it.

Please pray for me as I am waiting for test results and have to go for another test tonight. I am not afraid because I know nothing will happen to me that God doesn't allow, but I feel a bit worried all the same.

Soli Deo Gloria

bookworm questions

2008-12-16T16:44:00.002-05:00

Please answer this if you have time, if you don't have time I feel really bad for you.

Aside from the bible, what is the most influencial book you have read and why?

What is your favorite book you have read just for fun/enjoyment?

I think one of mine is the book I am reading right now called "surprised by suffering" because it uses biblical means to explain that God uses suffering for His Glory.

My fav for fun is anything Anne of Green Gables or anything by Guy Gavriel Kay.

Soli Deo Gloria

Joy revisited

2008-12-15T01:52:00.000-05:00

ok ok I get it! I am listening!! This was in my church bulletin on Sunday:

"Joy is a condition of the heart. It flows deeper than happiness and can be present even when life seems too hard to handle. In my spiritual practice of deep intentional breathing, joy is often what I sink into when I feel scattered or pulled in too many directions. It is the place where "heaven and nature sing", as in our hymn "Joy to the World."

Joy can be the wind dancing over our faces while we share a toboggan ride, or a quiet walk in the woods with only the trees speaking and our hearts celebrating all of creation. Never underestimate the strength of deep, God-gifted joy."

So obviously that was not enough of a shove in the right direction that I then got to see and experience profound joy.

There is a man who goes to my church. I know him very well and he is great to be around. Today I watched him have an epiphany of sorts I think. He has a developmental disability and sometimes he uses a wheelchair but yesterday he was walking, which was very nice to see.

So he was sitting near me and the church was really full, so great to see a full church! Now this particular man does not speak often but has the loudest, most infectious laugh in the world.

You could tell he loved church.

You could tell he loved people.

You could tell he loved God.

So at one point he was looking at the front cover of the bulletin, where there was a lovely picture of two children on a toboggan, and then he looked at mine and then he had this quizical look on his face for a moment and then he grabbed my paper, looked again at his and mine, put them one on top of each other, then pulled them apart again. Looked at me and looked at the papers again,

Then he said "SAME!" and laughed.

He grabbed the paper from the gentlemen beside him. Same process, look at them side by side, together and apart, look at the person.

Then he said "SAME!" and laughed.

He stole the paper from a new family in front of him. The kids were a bit frieghtened for a minute, then he laughed. All was well again.

Then he said "SAME!" and laughed.

Think he did it with several people around us always with the identical result.

"SAME!" laugh.

A very joyful man made even more joyful. And I have to say I agree with him in his statement or at least what I percieve of his statement.

Indeed, BELONGING makes us JOYFUL.

Soli Deo Gloria

Welcome to RAG's cooking show!

2008-12-14T14:17:00.000-05:00

I don't live with my family but I live with a bunch of really nice people.

On Sundays we have a meal together and today is my turn to cook.

I'm Canadian and something that is a really big treat for most of the people in my household is to have a roast of venison or deer. I don't eat it myself but I don't mind cooking it and I thought I would share the recipie with you. All the measurements are guesses! I don't measure anything!

It also takes about 3 days to make, though it is totally not hard, I made up the recipie myself!

Mystery-girl's orange glazed venison

1 cup orange marmelade

1/2 c hickory (or favorite semi-spicy) BBQ sauce

1/4 c vegetable or olive oil

1 c white vinegar

2 T montreal steak spice or similiar spice mix

1 t of garlic powder or 1 clove minced

1/4 c soya sauce

fresh cracked pepper and sea salt to taste.

1) I take my roast out and thaw for 24 hours in a brine of 1/2 c sea salt and water to cover it, leave it out during the day and refridgerate at night

2) mix all the ingerdients together and let sit overnight for another night as well, not mixed with the salt water!

3) put Venison (or other roast) in a crockpot or dutch oven pour the sauce on top and refridgerate overnight

4) cook on low all day, basting occassionally if you are around :)

as you can see from the picture, the orange rind in the marmelade coats the top and makes a glaze.

I don't eat the venison but the sauce is also good on Tofu or chicken.

Well, I did warn you this blog was random but I doubt you expected cooking tips too lol.

Soli Deo Gloria!

an unintentional poem-like substance

2008-12-13T08:19:00.000-05:00

I'm blogging to tell you I am not blogging today (unless the desire to, hits me like a mac truck later)

I have chronic pain.

Every moment.

Every day.

Sometimes it is a little less.

Sometimes it is a little worse.

But it is always there.

Last night was a bad one.

But today will be good, Lord willing.

I choose to have a good day.

We have the choice.

But if God chooses for it to be a bad day to teach me something.

So be it.

I will bow and follow, my King and Lord into the valley because I know I am not alone.

I will go where He leads.

Because He loves me.

So I am blogging to tell you I am not blogging.

But I think I just blogged.

Soli Deo Gloria

Joy and wierdness!

2008-12-12T12:30:00.000-05:00

I know I already blogged once today but I'm gonna do it again.

Something wierd happened last night, I mean really wierd.

My friend asked me if I was joyful, I thought he meant was I happy, which I wasn't as I had massive waves of pain knocking me over at the moment, so I said no.

Turns out he meant the biblical meaning, joyful in the Lord, in my circumstances, which I am. I am thankful God has given me so much, great friends, faith (even if it occasionally waivers the foundation is built on a rock solid basis), and is teaching me great lessons thru my illnesses. I am joyful in what God has done for me. and grateful. and totally undeserving of His grace upon grace that He pours on my head.

Then I went to read one of my favorite disability blogs, called Chewing the Fat, by David Hingsburger and he was also talking about Joy.

ok God, I'm listening! I will be more outwardly and inwardly joyful!

Thank you!

Soli Deo Gloria

Books are scary!

2008-12-11T00:30:00.000-05:00

I was in a major department store the other night and the funniest thing happened to me.

I had been perusing the book section when a shiny and soft red book with embossed ivy and beautiful golden scrolled letters caught my eye.

Now this is probably a great time to digress and tell you that I really enjoy books, big ones, small ones, fiction, real life, drama, nonsensical (remind me to tell you sometime about a book I have called My thesis of Bullshit hee hee) and especially fantasy. I have loved books for as long as I remember, they are safe, they allow me to be swallowed up from whatever real-life drama I may have been facing, they are friends and challengers.

My favorite book is my ESV Study bible, it is beautiful, but after that it is fair game. I almost simultainiously drooled and jumped for joy when a friend of mine, noticing that I was reading Reformed Theology by R.C. Sproul, offered to lend me his complete collection of Spurgeon sermons! OH HAPPY DAY!

Anyway, back to the story at hand.

This book was beautiful (ok ok I am a marketers dream!) and as I picked it up I noticed the title The Purpose of Christmas and thought oh yay, a book about the REAL meaning of Christmas without the comercialism, socialism and every other 'ism' that can possibly come with a secular Christmas.

Then the inevitable happened, I read who the author is....

and dropped the book, jumped back in horror and eeeked in a high pitched voice!

I swear people ran at me from all directions!! I think they thought I had a fit or something! ha ha ha!

Well that is what happens when I pick up a Rick Warren book!

I assured everyone, including my friends, that I was indeed ok, just really disliked the author. The rest of the trip was uneventful, I think my friends were glad I avoided the Osteen section! They giggled and teased me all the way home, but it was nice.

I guess it could be said that I have a "purpose driven" dislike of Rick Warren, I'll stick to my ESV thanks!

Soli Deo Gloria

ZOOOOM! a non-biblically based rant

2008-12-11T00:21:00.000-05:00

Pretend you are walking down the street, another person is walking towards you and they have their head down, now imagine you are having a bad day, maybe your boss yelled at you, your child fought with you this morning, you have a friend who is ill or you are trying to come up with a way to get everything on your long list done. The person approaching you looks up, does a kind of half smile,half grimace and blurts out

"HI! how are you?"

you start to say "I'm fi........"

ZOOOOM!

In a heartbeat that person is gone and never really cared how you are! I think we should all try and be conscious of what greetings we use and try not to use "how are you?" unless you really mean it.

I have been experiencing some horrible pain days and today I had to go out and do some errands on my work break and about 5 people passed me and said "hihowareyou?" as they zoomed by, I just find it incredibly frustrating! I did manage not to scream at them though, so YAY! (oh and I usually answer that question in public with something random, like "PURPLE!" it tells me who is really listening! hee hee)

But then again, I am also guilty of telling people I am "fine" when I am not, which I KNOW people who really know me and really are wondering how I am doing, find incredibly frustrating for them. I'm sorry.

All I can say is this, if I have to admit everyday how crappy or in pain I might be feeling, I feel like I have less time to praise God and it's more about me, me, me. People praying and worrying about me is really sweet but I don't want my life to be about me, me, me! I want my life, my existance, my ALL to be about God and His will for me.

On a side note:

I just picked up Surprised by Suffering by R.C. Sproul today from my library and I am already enamoured with it! I am sure that it will result in many bloggings.

Soli Deo Gloria!

healings and weakness

2008-12-10T11:26:00.001-05:00

I touched on it briefly yesterday but today I'd like to talk about it in more depth, although I am sure it will pop up again, here and there.

This is my view of healing. I have a lot of friends who desperately wish for me to be healed of my illnesses, disabilities or pain and they are quite often frustrated at my "I'm the same as yesterday" or "I'm alright" answer to their question "How are you?"

I have some really great, wonderful friends praying for my healing and trusting in the sovereignty of God.

But then there are the others, people who approach me to say to me "I have prayed long and hard about your healing, how are you feeling today?" and seem quite taken aback that I do not just jump up and do a backflip. Then sometimes they are angry and say things like "well I have done what I can do, now it is up to you to build up your faith enough to be healed"

Let me assure you that although my faith waivers and shakes at times, it is on a strong foundation of Christ, that is getting stronger everyday by God's grace alone.

I do not need to go to the Benny Hinns or Todd Bentlys of the world, I do not need to go to worldly men for my healing, let me make it quite clear, I would rejoice in being healed but I depend on God's sovereignty and grace to decide that for me. I do believe that people can be healed, I do believe that God works wonderously in this life, but He does it.

My healing or my disability have never been up to me and I will continue to leave them in God's hands. I am happy with my life and who I am and while I would make good use of pain-free days(what is that notion?), I make good use of my days where pain is my companion as well. I love God and want to follow His will and be content in His path for me.

Paul, one of Jesus' apostles, was bothered by an ailment, whether physical or spiritual that he talks about in 2 Corinthians 12:7-10

7 So to keep me from becoming conceited because of the surpassing greatness of the revelations, a thorn was given me in the flesh, a messenger of Satan to harass me, to keep me from becoming conceited. 8 Three times I pleaded with the Lord about this, that it should leave me. 9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 10 For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.

So Paul prayed and asked God to remove the thorn three times and then he honoured God's will for him by being content. I wish the same, not to say I am anything like Paul in my faith, I have prayed many times for my healing and now I wish not to nag the Lord :) there are so many wonderful things to pray about in praise or horrible things to petition God's mercy in.

"Power is made perfect in weekness"

This is a radical concept now, to say there is power in weakness in a society that praises the smartest, fastest, bravest and most beautiful. But indeed some of the most powerful people I know or admire in terms of spiritual riches or gifts of the spirit are people that are broken and weak. If our world had a day where it payed attention, I mean REALLY noticed the "weak" (the disabled, the mentally ill, the persecuted, the jailed, the homeless, the young, the old) we would be so so so much richer.

I hope this makes sense even a tiny bit to you, if you have managed to read this far into my ramblings, pat yourself on the back!

Soli Deo Gloria.

Endurance, Character and Hope from the Word

2008-12-09T18:11:00.000-05:00

3 More than that, we rejoice in our sufferings, knowing that suffering produces endurance, 4 and endurance produces character, and character produces hope, 5 and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us. ESV bible Romans 5:3-5

This is one of my favorite quotes in the bible, one of many. As a Christian who happens to be disabled, this gives me so much to say when people from the "emergent church-type movement" ask me why I am not healed yet.
This verse clearly shows me that sometimes God gives us hardships to fortify us for upcoming obsticals. I can endure my problems easier since I rely on the hope that my life and actions and endurance glorify God.
Anyone who knows me, knows I realy dislike being called an inspiration, but I can tell you that any inspiration you may see in me is only from God and for His glory.

Endurance, Character, Hope.

I have talked to many people, without disabilities, who say if they were in my shoes they would most likely be in despair. These are three powerful words but hope is my favorite by far.

I have endurance because I have a fighting spirit that has come from God. My will to perservere in the face of adversity is shear stubbornness and will power to not only survive but THRIVE!

The American Heritage® Dictionary defines Character as
-The combination of qualities or features that distinguishes one…
most of my friends would say I have a polar opposite character as in, I am all over the map! I can be quite serious and introspective but anyone who has heard my laugh know that it is exercised very often.

Hope
"How can you be so hopeful when you are in pain all the time?" is a question I get incredibly often and my question is how can I not? For me to "be in the deapths of dispair" (as Anne Shirley would say) would not do anything for my pain and probably make it worse! When I am running low on hope I have incredible friends who will lend me some of theirs.

Thank you for reading my ramblings :)
May God bless you!