I will start with the posts before launching onto my week. (BTW, what do you guys think of the new pretty layout? Tell me if you want anything to change).
Cheyanne: I related when everyone else was sick and you just thought your Gastroparesis was acting up. I think I've done the same in the past.
You asked what is the highest you know your heartrate has been? I don't know where Mum put my medical folder so I can't let at stress tests, halter monitors and stuff. I have seen it on my hospital charts in the 240s though, when I have been really unwell and they have done posturals. 240s is just ridicolous.
Hannah: what is your favourite i'm sick but need to get out of the house activity? Playing the backyard with the dogs. :) does the backyard count as being out of the house?
My question: Do you have a scale you rate days on?
I try to keep track of how many A (normal person) B (slightly strange but really good) C (typical day) D (Bad POTS day) E (ARGH! I HATE MY LIFE! I CAN"T WALK! MY LIFE IS OVER). I haven't had a E day in ages, I am bouncing between Bs and Cs at the moment which is okay.
My week is that on Wednesday I went downtown with my friends (I only have two periods on Wednesday). They had all you can eat pancakes and I just had a milkshake. We went via the toyshop and the library. Extension English was good that day!
Thursday, can't remember really what I did. On Friday my Dad was my casual teacher for double biology and I counted 3794 grains of rice with my friend. I hate you Dad! Kidding but I am not letting you live that down.
Saturday, my friend was having a sleep over because one of my friends is leaving school to do a course in hospality. So there was a going away party. I managed to go for a few hours but it was hard.
Sunday, I helped clean out the garage a bit and did some homework. The usual.
Yesterday, I went to school, then I went via my friend's house and saw all her puppies they are gorgeous. I love dogs. :) Then I went to the gym, where I worked out and got fit.
Today, I went to the library after school then hung out with my friends (one who was on her lunch break).
Tomorrow is Wednesday again so I only have two periods, I will probably go to my friend's house and swim his pool with some of my other friends. And we will probs get milkshakes. I love milkshakes haha.
Wait I almost forgot, last Friday I managed to do an obstacle course in Drama BLINDFOLDED. I was being helped by my teacher and my friend but I still managed to do it. I only sorta tripped once.
LOGAN! YOU BETTER POST TOMORROW! (btw my brother saw the video of you putting the tube down your throat and thought it was a magic trick. lol.)
Showing posts with label dysautonomia. Show all posts
Showing posts with label dysautonomia. Show all posts
Tuesday, February 7, 2012
Monday, January 23, 2012
Almost 200 posts!
Yes guys! Actually this will be the 168th post on the blog but we are getting close right? That is so cool.
So I am going to start with the posts then I will talk about my week, (well type not talk, haha).
Logan: Where are you girl? If you don't post tomorrow I will spam your inbox. Kidding, but I will send you a message and I hope you are okay. I know you were throwing up yesterday.
Cheyenne: You're driving? Wait, aren't you only 15? In Australia, you can't drive until you are 16, when you can apply for your Ls (learners permit) then at seventeen you can get your red ps (red permit), green ps, then your blacks (full license). Did you have any issue getting your permit? My doctors I don't think will ever let me drive.
You asked about gluten, and no I am not gluten free but I try and avoid white rice and bread.
Miranda: I am glad your homeschool review went well. You asked about what we do for joint pain and stiffness. I don't get that so I am not much help. Have you tried yoga though?
Hannah: Australia zoo is one of the zillion reasons you should get your but out to Australia! Haha, come to my house and we can have vegemite and tim tams. Hehe! Aussie Aussie Aussie Oi Oi Oi. I am sorry you overdid it cleaning by the way.
Michelle K: My Aussie Pal! First of all, even though I think you are crazy for going back to work, I hope it goes well for you! And I'm glad you have found someone, he sounds like a nice guy. You asked about abdominal pain and yes I do get that, especially after I eat Chinese food.
Erin: I just want to say that American healthcare sounds CRAZY! 25 dollars a day. I am so glad I'm Aussie. You asked about colds and I suck on eucalyptus lollies and take honey, I also brush my teeth all the time.
My week has been good, I overdid it a bit during the weekend but oh well. My Grandma was here, so I hung out with her a bit. We also went school shopping and I got all my supplies, I even have a new uniform (seniors get a new uniform at my school).
On the weekend, I helped my friend with my drama project (for her HSC) and it was a lot of walking, standing, running. Two of my friends stayed over on Saturday and we watched Music and Lyrics (which is a great film). Sunday night I was so tired I went to sleep at like 7!
This is the last week of school holidays. So my question this week is how do you stop yourself from overdoing it?
At the moment I do a to do list everyday with all the stuff I want to accomplish and stop when I do all those things, even things like "wash your hair" is on the list. I can only put so many tasks on the page. Haha.
I hope everyone has a good week. And I will let you know next week how I am going back at school.
So I am going to start with the posts then I will talk about my week, (well type not talk, haha).
Logan: Where are you girl? If you don't post tomorrow I will spam your inbox. Kidding, but I will send you a message and I hope you are okay. I know you were throwing up yesterday.
Cheyenne: You're driving? Wait, aren't you only 15? In Australia, you can't drive until you are 16, when you can apply for your Ls (learners permit) then at seventeen you can get your red ps (red permit), green ps, then your blacks (full license). Did you have any issue getting your permit? My doctors I don't think will ever let me drive.
You asked about gluten, and no I am not gluten free but I try and avoid white rice and bread.
Miranda: I am glad your homeschool review went well. You asked about what we do for joint pain and stiffness. I don't get that so I am not much help. Have you tried yoga though?
Hannah: Australia zoo is one of the zillion reasons you should get your but out to Australia! Haha, come to my house and we can have vegemite and tim tams. Hehe! Aussie Aussie Aussie Oi Oi Oi. I am sorry you overdid it cleaning by the way.
Michelle K: My Aussie Pal! First of all, even though I think you are crazy for going back to work, I hope it goes well for you! And I'm glad you have found someone, he sounds like a nice guy. You asked about abdominal pain and yes I do get that, especially after I eat Chinese food.
Erin: I just want to say that American healthcare sounds CRAZY! 25 dollars a day. I am so glad I'm Aussie. You asked about colds and I suck on eucalyptus lollies and take honey, I also brush my teeth all the time.
My week has been good, I overdid it a bit during the weekend but oh well. My Grandma was here, so I hung out with her a bit. We also went school shopping and I got all my supplies, I even have a new uniform (seniors get a new uniform at my school).
On the weekend, I helped my friend with my drama project (for her HSC) and it was a lot of walking, standing, running. Two of my friends stayed over on Saturday and we watched Music and Lyrics (which is a great film). Sunday night I was so tired I went to sleep at like 7!
This is the last week of school holidays. So my question this week is how do you stop yourself from overdoing it?
At the moment I do a to do list everyday with all the stuff I want to accomplish and stop when I do all those things, even things like "wash your hair" is on the list. I can only put so many tasks on the page. Haha.
I hope everyone has a good week. And I will let you know next week how I am going back at school.
Saturday, September 3, 2011
Super Saturday
I Nearly forgot to post.Okay anyways Dysautonomia week is like two weeks away but I'm super determined to do something for it like organizing a bake sale to raise money
so i go to walmart and ask them if we can have a bake sale there. there like talk to manager
so we do then there like it has to be in writing typed. so we give it to them then we call up later and there like usually you have to call months in advance but maybe we will luck out
they said to call back on Tuesday and they will give us an answer. Ugh don't they see that this is actually a worthy cause ? its not like were gonna sell stuff for profit
its going to research for dysautonomia. well if we get a yes it will be held in Maryland on September 17th hopefully at carol island walmart .Even if we can't have it there we will find somewhere else
plus i already bought cake mix so im not backing down ! I intend to be stubborn about this its time we bring some awareness to pots and dysautonomia I also thought of an Idea we could all wear blue shirts and post it as are profile pic during awareness week maybe even put pots on are heads something cool
people don't understand because we don't let them we don't explain because usually people don't have time to listen but this time is gonna be ours dysautonomia has a voice and were it
omg that sounded super deep lol okay on to questions
Hannah's Question: How much water a day do you try to drink? Or, if you really cannot drink a whole lot, what would be or is your goal?
I probably should drink more but i usually only drink a half a Gatorade.
which is pretty bad because your supposed to like drink a liter or something like that
Tana's :What is your favorite food to eat when you are feeling sick, but know you have to eat something?
First i have to say welcome back Tana I was wondering where you went.
I would have to say I like the little off brand goldfish crackers I think there called whales lol
apparently I'm the first September post so happy September :)
I guess my question is how are you gonna celebrate awareness week ?
as i mentioned earlier I'm planning on bake sale
so i go to walmart and ask them if we can have a bake sale there. there like talk to manager
so we do then there like it has to be in writing typed. so we give it to them then we call up later and there like usually you have to call months in advance but maybe we will luck out
they said to call back on Tuesday and they will give us an answer. Ugh don't they see that this is actually a worthy cause ? its not like were gonna sell stuff for profit
its going to research for dysautonomia. well if we get a yes it will be held in Maryland on September 17th hopefully at carol island walmart .Even if we can't have it there we will find somewhere else
plus i already bought cake mix so im not backing down ! I intend to be stubborn about this its time we bring some awareness to pots and dysautonomia I also thought of an Idea we could all wear blue shirts and post it as are profile pic during awareness week maybe even put pots on are heads something cool
people don't understand because we don't let them we don't explain because usually people don't have time to listen but this time is gonna be ours dysautonomia has a voice and were it
omg that sounded super deep lol okay on to questions
Hannah's Question: How much water a day do you try to drink? Or, if you really cannot drink a whole lot, what would be or is your goal?
I probably should drink more but i usually only drink a half a Gatorade.
which is pretty bad because your supposed to like drink a liter or something like that
Tana's :What is your favorite food to eat when you are feeling sick, but know you have to eat something?
First i have to say welcome back Tana I was wondering where you went.
I would have to say I like the little off brand goldfish crackers I think there called whales lol
apparently I'm the first September post so happy September :)
I guess my question is how are you gonna celebrate awareness week ?
as i mentioned earlier I'm planning on bake sale
Sunday, July 10, 2011
Hold on, baby you're loosing it
This week has been crap.
There is no nicer way to phrase it then crap.
So I am going to start with my week.
On Monday, I did schoolwork and then when over to a friend's place to get help in Maths. I was pushing myself but I wasn't going to admit that.
Tuesday I did schoolwork in the morning and then in the afternoon I crashed really hard. I went to watch Angus, thongs and perfect snogging but even that seemed too hard for me so I went to sleep and didn't eat anything for dinner.
Wednesday, ah the wonderful joys of Wednesday. Worst. Pots. Day. Ever. As you guys know I spent Wednesday night in the ER. I got to the point at home, where I couldn't speak, or even crawl. So Mum drove me in and they put me straight in via the ambulance entry in a wheelchair.
The doctor I saw was really good. He didn't know of Pots but he did some quick research and decided to give me an IV and also check my salt/potassium levels.
I got three litres overnight and managed to walk out of the hospital Thursday morning where I slept all day.
The next bit I will be lazy and copy and paste from my blog...
We left at 3am Friday to drive to Sydney and we had some time to kill before we got there so we went for a drive around Sydney Habour and around the bridge and opera house. I don't have pictures sorry! The iPod was flat.
Then we went shopping and I'll post a seperate post about that experience.
It was pretty unproductive actually, I don't understand why they got me down there in my opinion.
Both my parents were in the room, as well as my professer, his registar and my social worker.
We talked about pacing and how I shouldn't overdo it. Haha, comes from the people who made me overdo it against my own will during my last admission.
I got posturals done, weight and height. My weight has gone up a bit after my recent weight loss and my height is 174cm I think.
I blacked out a few times going to the next room where they did all that stuff. When I got back my breathing was all over the place and my heart was pounding. I was dizzy as and everything was shaking.
The appointment ended and my
social worker and professer left. His registar was filling out some forms for us.
When we went to leave, I stood up and collasped into my chair, blacking out. Dad tried to help me up but I just crashed into him hard and fainted. Tried again, ditto.
The registar came back to return the forms and the OT came and got me a chair.
They sent me home like that.
They sent me home unable to walk, stand or speak one sentence.
Anyway car ride home, bad earthquake vertigo had to crawl into my Aunty's house where we stayed. I threw up four times. Then went to sleep.
Then I came home Saturday. Yesterday, I can't remember what I did. And today is still shit as. I have fainted like everyday this week and my tremors and vertigo have been so bad. School goes back on Tuesday so I hope I can return. I go back to hospital for a two week admission on August 1st.
This post is turning out to be...long. Sorry guys.
Trixie is doing well and is getting along with my labrador. Just thought I'd mention that.
So now, finally! let's get on to the questions shall we?
Logei asked: does nutrition have a big impact on your symptoms?
Yes. It does. I find whenever I eat crap (chocolate, junk food, excetra) I feel so bad and tachy and everything.
Erin asked: Any weight loss or gain since pots?
Since starting on my SSRI I have lost five kilos in a few short weeks.
Hannah: Any natural remedies for headaches?
Water? Sorry I don't get headaches. True fact about me: I will only get a headache when I am about to throw up. :) it's useful when nausea is a symptom but if i have a headache its like pass me that bucket!
My question is: are you a fainter/if so give me some advice!
Yeah I haven't been a fainter since Wednesday.
And haha I have a funny fainting story. Okay I was talking to my Dad in the hallway and I go to faint so I go to grab hold of him around the neck except I miss-punching him in the face! I regain consciencness to ah! you bitch! haha it was really funny. It was revenge for when he was zapping me in my wheelchair on Friday causing me to spill a bottle of water on myself.
Well I am going to go because this post is way too long and I am sorry for that.
Rhianne
There is no nicer way to phrase it then crap.
So I am going to start with my week.
On Monday, I did schoolwork and then when over to a friend's place to get help in Maths. I was pushing myself but I wasn't going to admit that.
Tuesday I did schoolwork in the morning and then in the afternoon I crashed really hard. I went to watch Angus, thongs and perfect snogging but even that seemed too hard for me so I went to sleep and didn't eat anything for dinner.
Wednesday, ah the wonderful joys of Wednesday. Worst. Pots. Day. Ever. As you guys know I spent Wednesday night in the ER. I got to the point at home, where I couldn't speak, or even crawl. So Mum drove me in and they put me straight in via the ambulance entry in a wheelchair.
The doctor I saw was really good. He didn't know of Pots but he did some quick research and decided to give me an IV and also check my salt/potassium levels.
I got three litres overnight and managed to walk out of the hospital Thursday morning where I slept all day.
The next bit I will be lazy and copy and paste from my blog...
We left at 3am Friday to drive to Sydney and we had some time to kill before we got there so we went for a drive around Sydney Habour and around the bridge and opera house. I don't have pictures sorry! The iPod was flat.
Then we went shopping and I'll post a seperate post about that experience.
It was pretty unproductive actually, I don't understand why they got me down there in my opinion.
Both my parents were in the room, as well as my professer, his registar and my social worker.
We talked about pacing and how I shouldn't overdo it. Haha, comes from the people who made me overdo it against my own will during my last admission.
I got posturals done, weight and height. My weight has gone up a bit after my recent weight loss and my height is 174cm I think.
I blacked out a few times going to the next room where they did all that stuff. When I got back my breathing was all over the place and my heart was pounding. I was dizzy as and everything was shaking.
The appointment ended and my
social worker and professer left. His registar was filling out some forms for us.
When we went to leave, I stood up and collasped into my chair, blacking out. Dad tried to help me up but I just crashed into him hard and fainted. Tried again, ditto.
The registar came back to return the forms and the OT came and got me a chair.
They sent me home like that.
They sent me home unable to walk, stand or speak one sentence.
Anyway car ride home, bad earthquake vertigo had to crawl into my Aunty's house where we stayed. I threw up four times. Then went to sleep.
Then I came home Saturday. Yesterday, I can't remember what I did. And today is still shit as. I have fainted like everyday this week and my tremors and vertigo have been so bad. School goes back on Tuesday so I hope I can return. I go back to hospital for a two week admission on August 1st.
This post is turning out to be...long. Sorry guys.
Trixie is doing well and is getting along with my labrador. Just thought I'd mention that.
So now, finally! let's get on to the questions shall we?
Logei asked: does nutrition have a big impact on your symptoms?
Yes. It does. I find whenever I eat crap (chocolate, junk food, excetra) I feel so bad and tachy and everything.
Erin asked: Any weight loss or gain since pots?
Since starting on my SSRI I have lost five kilos in a few short weeks.
Hannah: Any natural remedies for headaches?
Water? Sorry I don't get headaches. True fact about me: I will only get a headache when I am about to throw up. :) it's useful when nausea is a symptom but if i have a headache its like pass me that bucket!
My question is: are you a fainter/if so give me some advice!
Yeah I haven't been a fainter since Wednesday.
And haha I have a funny fainting story. Okay I was talking to my Dad in the hallway and I go to faint so I go to grab hold of him around the neck except I miss-punching him in the face! I regain consciencness to ah! you bitch! haha it was really funny. It was revenge for when he was zapping me in my wheelchair on Friday causing me to spill a bottle of water on myself.
Well I am going to go because this post is way too long and I am sorry for that.
Rhianne
Monday, June 27, 2011
Make you happy
I think I will start with the questions:
Logei: are you scared of clowns?
I wouldn't say I was scared of them but they are way freaky. I have a fear of elevators and mice.
Erin: Good to see you on the blog! You did a great job. You asked: do you use a shower chair?
Yes I do. Well it's more like a step stool actually.
What do you guys want to do when you grow up/graduate? And how do you think dysautonomia will affect your choice?
Well I want to be a novelist but seeing that is a pipe dream, journalism or script writing. I don't think I will have pots forever and even if I do, they are desk jobs.
And Miranda, I hope things work out better soon I am thinking of you.
Francessa didn't have a question (I probably forgot to tell her to ask one). You were a great sub though! :)
My question is: does anything cause/help with tremors?
I have had them a lot recently. I scared my English class when I went on Wednesday with what resembled an epileptic fit.
So onto my week:
Well early last week we had a lot of stuff for subject. There was a night information session on Wednesday and I did pretty well pots wise.
I picked:
Drama
Biology
Modern history
Society and Culture
Maths
Advanced English
This is the first year you get to pick all your subjects so it is pretty exciting. My pots has been good too so I have managed to do a lot.
And yeeeeee, it's my birthday tomorrow. I will be fifteen.
So this has been a good week. The best in months so I am really really happy.
And I have upped my school days to 4 a week and am returning to my maths class (well returned I went today).
Life is great.
-Rhianne
Logei: are you scared of clowns?
I wouldn't say I was scared of them but they are way freaky. I have a fear of elevators and mice.
Erin: Good to see you on the blog! You did a great job. You asked: do you use a shower chair?
Yes I do. Well it's more like a step stool actually.
What do you guys want to do when you grow up/graduate? And how do you think dysautonomia will affect your choice?
Well I want to be a novelist but seeing that is a pipe dream, journalism or script writing. I don't think I will have pots forever and even if I do, they are desk jobs.
And Miranda, I hope things work out better soon I am thinking of you.
Francessa didn't have a question (I probably forgot to tell her to ask one). You were a great sub though! :)
My question is: does anything cause/help with tremors?
I have had them a lot recently. I scared my English class when I went on Wednesday with what resembled an epileptic fit.
So onto my week:
Well early last week we had a lot of stuff for subject. There was a night information session on Wednesday and I did pretty well pots wise.
I picked:
Drama
Biology
Modern history
Society and Culture
Maths
Advanced English
This is the first year you get to pick all your subjects so it is pretty exciting. My pots has been good too so I have managed to do a lot.
And yeeeeee, it's my birthday tomorrow. I will be fifteen.
So this has been a good week. The best in months so I am really really happy.
And I have upped my school days to 4 a week and am returning to my maths class (well returned I went today).
Life is great.
-Rhianne
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