Wednesday, November 16, 2011

Flare squared

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 Gloria REformed girlflares

Sunday, October 9, 2011

RIP Alexa Simmons, real friend.

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

Monday, October 3, 2011

Modest Monday

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

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


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

Wednesday, April 13, 2011

'nuff said

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

Monday, April 4, 2011

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


Irritable bowel syndrome
Muscle spasms
Lack of appetite
Incessant pain


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

Sunday, April 3, 2011

Is help a four letter word?

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

Saturday, March 26, 2011

Things that bug me when I'm out and about

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.

Friday, March 25, 2011

Lupus love

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



Love y'all!
Soli Deo Gloria
REformed girl

Monday, March 21, 2011

Fighting flame

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

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

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

Tuesday, March 8, 2011

I told you I was bad at this blogging thing!

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!