Sept 30th, 2010

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

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

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

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)

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!

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!

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!

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!

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!

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!

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!

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

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

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

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?