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!