Monday, October 4, 2010

my absence, October 04th, 2010

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

Friday, October 1, 2010

October 1st, 2010

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

Thursday, September 30, 2010

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

Wednesday, September 29, 2010

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

Tuesday, September 28, 2010

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 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!

Soli Deo Gloria
REformed girl

Monday, September 27, 2010

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

Sunday, September 26, 2010

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

Saturday, September 25, 2010

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

Friday, September 24, 2010

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!

Thursday, September 23, 2010

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

Wednesday, September 22, 2010

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

Tuesday, September 21, 2010

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!! 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

Monday, September 20, 2010

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

Sunday, September 12, 2010



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


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

Thursday, September 9, 2010

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?

Friday, August 20, 2010

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

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!

Monday, August 16, 2010

psalm 42 and a worrywart! (ME)

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

Sunday, August 15, 2010

diagnoses(es es essss)

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

Friday, August 13, 2010

what a mess!

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

Friday, August 6, 2010

eye candy - entitled Sparkly shoes and rainbow mobility aids

a poem-like substance

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

Friday, July 30, 2010

good newzes

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!

Thursday, July 29, 2010

to feel or not to feel

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

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......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

Wednesday, July 28, 2010


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

Sunday, July 18, 2010

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

Thursday, July 15, 2010


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 s
leep tonight!
I'm thankfu
l for good friends who are also insomniacs who kept me company last night.
I hope they s
leep tonight too!
li Deo Gloria
REformed gir

Wednesday, July 14, 2010

the reinvention of me

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 o
ld 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




li Deo Gloria

REformed anon gir

Tuesday, July 13, 2010

baby's back!

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