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
Tuesday, September 21, 2010
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
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
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
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
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?
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, Anemia2. 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
ChroniclyRandom
and why are you in turmoil within me?
Hope in God; for I shall again praise him,
my salvation [12] 6 and my God.
Psalm 42:5
This was a good reminder to me in my daily readings today. I've been so worried about my mom but I know (or should know I chastise myself) that God has a plan.
I don't know whether to have tentative hope for my mother, she called both of my older siblings yesterday out of the blue, she never calls anyone! And she sounded sober.....maybe this is the catalyst she needed. I said today, I don't care if I ever talk to her again, if that is what she needs to stop slowly killing herself, then I have to be ok with that. But I really hope that is not the case because I miss her very much but want her to be well. I have to look after me right now and trust that maybe, just maybe, she is getting what she needs.
Soli Deo Gloria
REformed anon girl
ChroniclyRandom
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