Hi guys,
Long time no emails. lol.
I was wondering if any of you's have gone camping with CF. And also
how yous handled any cf complications?
Thanks
kat
Dont be so sure. Marfans is heredity like marfans...BUT not in all cases. I am classed as being medical unique 2 diseases affecting one lung. But in my case CF and Marfans is not heredity as its starts off with me and ends with me. Jasmine may have the possibilty of being a marfans girl, only cos i started off the line. And both kids are CF free, though i feel that jasmine may be a carrier for the gene.
You could also be the only "marfans " girl in your family as well. :-)
im 22. of course my family doesnt have it lol. i think we just have funny features that were passed down, thats all. so the doc wont need to get an ego. not that he would anyway, doesnt seem the type. but its good that he made the observation anyway. shows hes thinking outside the square and for someone somewhere, thats a good thing. need more docs like that. i have no idea how that song goes but your version sure is weird!
Tiring aspect isnt the word for it, some days shes bouncing off the walls. lol. She has an attention span of 10 mins. 15 if i am lucky. Though she can spend hours on the comp playing her My little pony games.
Jasmine has a slightly speech problems, which we also learnt sign language, and she has a set rountine. For example when we go outside she will go to the flowers, wash her bike with the hose, climb in the dog kennel, and go into the shed. Well one day, the dog kennel was moved, and she cracked it. She was very distraught, so i had to move it back to the orignial spot. The school is helpimg me, as jasmine also has a problem with food, she doesnt try anything, and her meals consists of ham/cheese/salada on a plate or happy meal(checken nuggets)/Pop corn chicken/ 2 min noodles/ vegemite sandwiches. Last night we celebrated because she has some apple with me. 1 quarter to be exact. The school is helping me to get her to eat more and expand her taste buds. Jasmine only drinks Milk or Water. Mostly water. She used to eat vegies until the hospitial incident 2 years ago, thats when she went off food. Jasmine also takes off when out shopping. Or she run from aisle to aisle, and you gotta chase her, its a friggin nightmare esspecially when i am coughing my heart out trying to catch up with her. I get homecare and respite for jasmine about 4 hrs per fortnight.
The ausitic school in which she is in, has helped her alot, esspecially with cooking and excusions. She also has the same moods as me, now thats freaky. Its like looking at myself. lmao.
Yous can ask anything you want, as my personal webite is bout myself and also Jasmines ausitism, from when she was first dignosed. If your interested and have 10 mins to spare feel free to check it out.
Your daughter must be a blessing and a ... tireing aspect of your life. I am so sorry that she is sick with several conditions. I have encountered several autistic kids in my recent teaching at primary schools - there is so much variation in the severity. Is your daughter verbal? - I hope that is not rude of me to ask.
I didnt know you were having problems sleeping. Dont be surprised if the Dr gets you to see a numberous amount of Doctor's who specialises in Marfans, and also an echocargiogram done. The measure your arm width, look at your chest/ribs cage, go to an eye specialist and also they check out the roof of your mounth, your into a heap of FUN and boredom. lol. Not to mention another talk about your family history, and who else is tall in your family....What are you toes like? Next time your Dr brings up marfans, ask him bout Beals, as its the "sister" of Marfans, but most Dr mistaken Marfans for beals.
Hate to put a dent in "most girls are generally tall", throw that out the window, as most of the tall people i have met all have marfans. Abraham lincoln had Marfans, so he wasnt Generally tall......My 5 years old daughter already has heart problems along with her ausitism, her echo proved that, and the Dr said she will probably have Marfans and she will be 6'4.
Funny how we both have the tiredness, but is diagnosed differently, i get the 2nd part of my blood test results on Friday for thyroid - as she said that is making me tired, as well as lack of iron. And your having throat problems. I am surprised you havent gone thru heaps of blood tests. Let me know how everything goes, as i am very interested to know.
Subject: [cysticfibrosisdiscussion] my sleep clinic appointment
saw the sleep clinic today. i have a study done on sunday [how quick was that?]. this will interest you kat. the doctor kept asking me about marfans syndrome! 'are you sure you dont have it?' 'has anyone checked for it?' 'has anyone ever mentioned it?'. weird huh. he seemed to be shocked at the fact that some girls are just naturally tall lol. he said either way he is going to keep marfans in mind if and when he makes a diagnoses. anyway, he seems to think i have sleep apnea. apparently i have quite a narrow and floppy throat and that *could* be the cause of my tiredness. charming! dont ask me how im going to go to sleep with cords and machines everywhere. i plan on taking my sleeping tablets along with me. i just hope this shows up something because life as a zombie is starting to wear thin with me.
The roof of your mouth is surposed to be higher than anyones else inner mouth(High arched plate). Funny how americans how big mouths/gums/teeth, as there main health cover is dental, whereas ours isnt. Dr's are funny, i dont have any heart problems either but Marfans also has collapsed lungs, and cornea in your eyes can slip out. they told me i have Marfans, for 2 years, then they told me I didnt, because my heart was fine, then i flipped thru my medical records when my CF dr was out the room, and i asked himn about Marfans, and he said i did have it, but not as bad as my heart is fine. So one Dr is saying i havent got it, another is saying i have. I am going to organise to view my medical file - Out of freedom of information. But then there was a lady called alison, she had marfans, her heart was fine, but shes have had 7 collaspsed lungs. Confusing huh?lol
Do you toes overlap the other toe? Or are the long and not touching?
Subject: Re: [cysticfibrosisdiscussion] my sleep clinic appointment
"most of the tall people i have met all have marfans" eeep! he actually checked my mouth and said something about a high arched palate? i really dont know what that is or what its suppose to do but i read it has something to do with marfans. he kept going on about my slender face too. my whole family has little jaws. i wanted to be born with some huge american type jaw. yeah! he checked my armspan but im assuming it was fine. it was the same as my height and im pretty sure thats normal. as far as i know i dont have any heart problems and my eyes are fine apart from a being a bit shortsighted. my toes are fine? they are long though. everyone in the family has long feet and toes including aunt and grandma. i dont see this particular doctor until after the sleep study but if he wants to look into it i wont object. but im not going to bother bringing it up either because nothing will really change the fact that im tall and have funny features lol!
im 22. of course my family doesnt have it lol. i think we just have funny features that were passed down, thats all. so the doc wont need to get an ego. not that he would anyway, doesnt seem the type. but its good that he made the observation anyway. shows hes thinking outside the square and for someone somewhere, thats a good thing. need more docs like that. i have no idea how that song goes but your version sure is weird!
Your daughter must be a blessing and a ... tireing aspect of your life. I am so sorry that she is sick with several conditions. I have encountered several autistic kids in my recent teaching at primary schools - there is so much variation in the severity. Is your daughter verbal? - I hope that is not rude of me to ask.
With much admiration for you
Clare
aussiebillabong <kham2601@...> wrote:
I didnt know you were having problems sleeping. Dont be surprised if the Dr gets you to see a numberous amount of Doctor's who specialises in Marfans, and also an echocargiogram done. The measure your arm width, look at your chest/ribs cage, go to an eye specialist and also they check out the roof of your mounth, your into a heap of FUN and boredom. lol. Not to mention another talk about your family history, and who else is tall in your family....What are you toes like? Next time your Dr brings up marfans, ask him bout Beals, as its the "sister" of Marfans, but most Dr mistaken Marfans for beals.
Hate to put a dent in "most girls are generally tall", throw that out the window, as most of the tall people i have met all have marfans. Abraham lincoln had Marfans, so he wasnt Generally tall......My 5 years old daughter already has heart problems along with her ausitism, her echo proved that, and the Dr said she will probably have Marfans and she will be 6'4.
Funny how we both have the tiredness, but is diagnosed differently, i get the 2nd part of my blood test results on Friday for thyroid - as she said that is making me tired, as well as lack of iron. And your having throat problems. I am surprised you havent gone thru heaps of blood tests. Let me know how everything goes, as i am very interested to know.
Subject: [cysticfibrosisdiscussion] my sleep clinic appointment
saw the sleep clinic today. i have a study done on sunday [how quick was that?]. this will interest you kat. the doctor kept asking me about marfans syndrome! 'are you sure you dont have it?' 'has anyone checked for it?' 'has anyone ever mentioned it?'. weird huh. he seemed to be shocked at the fact that some girls are just naturally tall lol. he said either way he is going to keep marfans in mind if and when he makes a diagnoses. anyway, he seems to think i have sleep apnea. apparently i have quite a narrow and floppy throat and that *could* be the cause of my tiredness. charming! dont ask me how im going to go to sleep with cords and machines everywhere. i plan on taking my sleeping tablets along with me. i just hope this shows up something because life as a zombie is starting to wear thin with me.
Kylie - Great little anicdote lol How old are you ? now if you do have Marfans and nobody has picked it up yet (and it sounds like you whole family must have it tooo? ) then this doc is going to have a head/ego swell that will cause him difficulty getting throo doorways.
(to the tune of Girl from ipanena)
"tall n tender, young and lovely the girl with marfans goes walking..."
go well
Clare
Kylie Taylor <ktaylor@...> wrote:
"most of the tall people i have met all have marfans" eeep! he actually checked my mouth and said something about a high arched palate? i really dont know what that is or what its suppose to do but i read it has something to do with marfans. he kept going on about my slender face too. my whole family has little jaws. i wanted to be born with some huge american type jaw. yeah! he checked my armspan but im assuming it was fine. it was the same as my height and im pretty sure thats normal. as far as i know i dont have any heart problems and my eyes are fine apart from a being a bit shortsighted. my toes are fine? they are long though. everyone in the family has long feet and toes including aunt and grandma. i dont see this particular doctor until after the sleep study but if he wants to look into
it i wont object. but im not going to bother bringing it up either because nothing will really change the fact that im tall and have funny features lol!
"most of the tall people i have met all have marfans" eeep! he actually checked my mouth and said something about a high arched palate? i really dont know what that is or what its suppose to do but i read it has something to do with marfans. he kept going on about my slender face too. my whole family has little jaws. i wanted to be born with some huge american type jaw. yeah! he checked my armspan but im assuming it was fine. it was the same as my height and im pretty sure thats normal. as far as i know i dont have any heart problems and my eyes are fine apart from a being a bit shortsighted. my toes are fine? they are long though. everyone in the family has long feet and toes including aunt and grandma. i dont see this particular doctor until after the sleep study but if he wants to look into it i wont object. but im not going to bother bringing it up either because nothing will really change the fact that im tall and have funny features lol!
I didnt know you were having problems sleeping. Dont be surprised if the Dr gets you to see a numberous amount of Doctor's who specialises in Marfans, and also an echocargiogram done. The measure your arm width, look at your chest/ribs cage, go to an eye specialist and also they check out the roof of your mounth, your into a heap of FUN and boredom. lol. Not to mention another talk about your family history, and who else is tall in your family....What are you toes like? Next time your Dr brings up marfans, ask him bout Beals, as its the "sister" of Marfans, but most Dr mistaken Marfans for beals.
Hate to put a dent in "most girls are generally tall", throw that out the window, as most of the tall people i have met all have marfans. Abraham lincoln had Marfans, so he wasnt Generally tall......My 5 years old daughter already has heart problems along with her ausitism, her echo proved that, and the Dr said she will probably have Marfans and she will be 6'4.
Funny how we both have the tiredness, but is diagnosed differently, i get the 2nd part of my blood test results on Friday for thyroid - as she said that is making me tired, as well as lack of iron. And your having throat problems. I am surprised you havent gone thru heaps of blood tests. Let me know how everything goes, as i am very interested to know.
Subject: [cysticfibrosisdiscussion] my sleep clinic appointment
saw the sleep clinic today. i have a study done on sunday [how quick was that?]. this will interest you kat. the doctor kept asking me about marfans syndrome! 'are you sure you dont have it?' 'has anyone checked for it?' 'has anyone ever mentioned it?'. weird huh. he seemed to be shocked at the fact that some girls are just naturally tall lol. he said either way he is going to keep marfans in mind if and when he makes a diagnoses. anyway, he seems to think i have sleep apnea. apparently i have quite a narrow and floppy throat and that *could* be the cause of my tiredness. charming! dont ask me how im going to go to sleep with cords and machines everywhere. i plan on taking my sleeping tablets along with me. i just hope this shows up something because life as a zombie is starting to wear thin with me.
hope it goes well... answers found that sort of thing
Clare
kitakins83 <ktaylor@...> wrote:
saw the sleep clinic today. i have a study done on sunday [how quick was that?]. this will interest you kat. the doctor kept asking me about marfans syndrome! 'are you sure you dont have it?' 'has anyone checked for it?' 'has anyone ever mentioned it?'. weird huh. he seemed to be shocked at the fact that some girls are just naturally tall lol. he said either way he is going to keep marfans in mind if and when he makes a diagnoses. anyway, he seems to think i have sleep apnea. apparently i have quite a narrow and floppy throat and that *could* be the cause of my tiredness. charming! dont ask me how im going to go to sleep with cords and machines everywhere. i plan on taking my sleeping tablets along with me. i just hope this shows up something because life as a zombie is starting to wear thin with me.
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saw the sleep clinic today. i have a study done on sunday [how quick
was that?]. this will interest you kat. the doctor kept asking me
about marfans syndrome! 'are you sure you dont have it?' 'has anyone
checked for it?' 'has anyone ever mentioned it?'. weird huh. he seemed
to be shocked at the fact that some girls are just naturally tall lol.
he said either way he is going to keep marfans in mind if and when he
makes a diagnoses. anyway, he seems to think i have sleep apnea.
apparently i have quite a narrow and floppy throat and that *could* be
the cause of my tiredness. charming! dont ask me how im going to go to
sleep with cords and machines everywhere. i plan on taking my sleeping
tablets along with me. i just hope this shows up something because
life as a zombie is starting to wear thin with me.
I also find that at times, that CF is a conversation killer, then they apologise constantly. LOL @ feed me grapes. I like that one!
That comment wouldve gotten up my goat as well. I just cant get over how rude people are, and to tell you the truth its kinda affecting my attitude outside the internet. Its like saying to a person in wheelchair, c'mon Ill race ya to the corner...I cant get over that comment that lady made to you.
I have a blue handicap sticker on my car, i didnt want one, but my local doctor insisted. So i got one anyway. Do yous have one? Anyway within the first 2 weeks of me moving into a new suburb, i already got into a blue. I am the type of person where i generally keep to myself....My son, Tristan, 14 going on 45, was getting into the car at safeway, as i was parked in a handicap zone. I was already in the car. I hear tristan talking to a lady, and i looked at her and she was telling tristan off, so i got out the car, and asked her what her problem was she told me that there was nothing wrong with tristan and i shouldnt have a sticker. I told her it wasnt for tristan it was for me, then she crapped on about how i didnt need one, and there is nothing wrong with me and i was abusing the system. I walked up to her, told her looks can be deceiving and that i have CF. Now, is this a fucking problem? She turned bright red, looked down at her feet, and walked off. I was pissed off all day...and i still remember it clearly.
But you have given me a new line for when my partner wants sex - Cage that beast!! lmao.
I do like the pockets. They also look pretty long. I took a chance and brought a pair of ebay. Not keen on the picture on the legs, but i was more interested in the lenght.
Subject: Re: [cysticfibrosisdiscussion] How to tell strangers
if people want to know, or they make a wrong assumption about me i just come right out and say i have cf. usually its a conversation killer but it doesnt bother me. suprisingly the most comments im getting lately at the shops is 'so do you have the day off work' instead of the ole cough comments [although i did have a rude one the other day which i will talk about later]. this really gets on my goat. for starters not every single person works so why ask that question anyway. second, when i say 'no, i dont work', they start to go on about how easy my life must be. so of course i mention that i have cf and i dont lay out in the sun everyday having a servant feed me grapes. like i said before i dont mind saying i have cf, but its the way people get this information out of me that bothers me. some folks just say the most bizarre things.
anyway totally off topic i will talk about my rude experience the other day. i was at the shops and i walked past one of those little promotion stalls in the middle of the walkway. i coughed and the lady goes 'oh gee that doesnt sound to good'. i just smile and laugh. i get that comment all the time and its true, it doesnt sound good! lol. so i kept on walking. i had to cough again and the lady SHOUTS out 'you need to put that thing in a cage!'. at first i didnt quite know what she was on about. all i heard was thing and cage and that she was yelling at me. so i asked my brother what on earth she said. i didnt bother to go back and give her a mouthful. i figured she was just the type of loser who says inappropriate things all the time. her friends and family probably give her shit for it anyway lol. but yes, why on earth say that sort of thing to someone? i understand that she doesnt know i have cf, but why would you even say that to someone if you thought they had a cold or flu? anyway, my new catch phrase for when i cough is 'CAGE THAT BEAST!' as i slap my hand like some US country bumpkin.
heya kat. i havent bothered looking at op shops at the moment because i have my heart set on a particular brand of jeans. im just waiting for the 35" leg styles to go on sale somewhere. http://store.shopbop.com/product_images/ANTIK1-L.jpg nice pockets huh?
I love the "CAGE THAT BEAST" I can just imagine you doing that! lol
I actually think the lady was quite creative with her comment - rude, but creative.
Great stories Kylie - Iaughed alot
Clare
Kylie Taylor <ktaylor@...> wrote:
if people want to know, or they make a wrong assumption about me i just come right out and say i have cf. usually its a conversation killer but it doesnt bother me. suprisingly the most comments im getting lately at the shops is 'so do you have the day off work' instead of the ole cough comments [although i did have a rude one the other day which i will talk about later]. this really gets on my goat. for starters not every single person works so why ask that question anyway. second, when i say 'no, i dont work', they start to go on about how easy my life must be. so of course i mention that i have cf and i dont lay out in the sun everyday having a servant feed me grapes. like i said before i dont mind saying i have cf, but its the way people get this information out of me that bothers me. some folks just say the most bizarre things.
anyway totally off topic i will talk about my rude experience the other day. i was at the shops and i walked past one of those little promotion stalls in the middle of the walkway. i coughed and the lady goes 'oh gee that doesnt sound to good'. i just smile and laugh. i get that comment all the time and its true, it doesnt sound good! lol. so i kept on walking. i had to cough again and the lady SHOUTS out 'you need to put that thing in a cage!'. at first i didnt quite know what she was on about. all i heard was thing and cage and that she was yelling at me. so i asked my brother what on earth she said. i didnt bother to go back and give her a mouthful. i figured she was just the type of loser who says inappropriate things all the time. her friends and family probably give her shit for it anyway lol. but yes, why on earth say that sort of thing to someone? i understand that she doesnt know i have cf, but why would you even say that to someone if you
thought they had a cold or flu? anyway, my new catch phrase for when i cough is 'CAGE THAT BEAST!' as i slap my hand like some US country bumpkin.
heya kat. i havent bothered looking at op shops at the moment because i have my heart set on a particular brand of jeans. im just waiting for the 35" leg styles to go on sale somewhere. http://store.shopbop.com/product_images/ANTIK1-L.jpg nice pockets huh?
if people want to know, or they make a wrong assumption about me i just come right out and say i have cf. usually its a conversation killer but it doesnt bother me. suprisingly the most comments im getting lately at the shops is 'so do you have the day off work' instead of the ole cough comments [although i did have a rude one the other day which i will talk about later]. this really gets on my goat. for starters not every single person works so why ask that question anyway. second, when i say 'no, i dont work', they start to go on about how easy my life must be. so of course i mention that i have cf and i dont lay out in the sun everyday having a servant feed me grapes. like i said before i dont mind saying i have cf, but its the way people get this information out of me that bothers me. some folks just say the most bizarre things.
anyway totally off topic i will talk about my rude experience the other day. i was at the shops and i walked past one of those little promotion stalls in the middle of the walkway. i coughed and the lady goes 'oh gee that doesnt sound to good'. i just smile and laugh. i get that comment all the time and its true, it doesnt sound good! lol. so i kept on walking. i had to cough again and the lady SHOUTS out 'you need to put that thing in a cage!'. at first i didnt quite know what she was on about. all i heard was thing and cage and that she was yelling at me. so i asked my brother what on earth she said. i didnt bother to go back and give her a mouthful. i figured she was just the type of loser who says inappropriate things all the time. her friends and family probably give her shit for it anyway lol. but yes, why on earth say that sort of thing to someone? i understand that she doesnt know i have cf, but why would you even say that to someone if you thought they had a cold or flu? anyway, my new catch phrase for when i cough is 'CAGE THAT BEAST!' as i slap my hand like some US country bumpkin.
heya kat. i havent bothered looking at op shops at the moment because i have my heart set on a particular brand of jeans. im just waiting for the 35" leg styles to go on sale somewhere. http://store.shopbop.com/product_images/ANTIK1-L.jpg nice pockets huh?
probably each person has their own technique of telling strangers why the cough. I like people to continue to feel comfy with me so before I have finished I am smiling at them through my coughs... It sort of looks like a laugh / cough then ... end my coughs on a laugh and then say "actually I have a chronic respiratory condition" smile wide and raise the eyebrows and say "don't worry it is not catching" ... it is like I have made a joke about what they might have been thinking and how silly it is.
I usually see a sympathetic look come into their eyes, and they either ask more questions, or change the subject and I have an interesting converstaion with them. They really end up seeing me as a person. It helps that I find my life interesting as well and therefore talk about it with annimation. Eventually I change the subject to them. CF has made me more friends than been a barrier ( I think... ?)
Kylie - how do you do it?
Re the complementary therapies
Reiki is an energy transfer from the universe, through the practicioner, to your body/mind/emotions. Assists with general healing - I find it good to clean out emotional waste.
Bowen is a gentle manipulation of muscles such that the body continues to relax and free up movement. I find it as effective as a deep tissue massage yet it takes a 1/4 of the time and has no pain attached.
The most effective treatment I have found for depression/getting through difficult times (together with those wonderfully numing tablets from the GP when it was life threatening) is Kinesiology. I cannot describe to you how it works all i really can say is that it DOES WORK! All that shit and baggage that we stir through when we feel bad can be resolved. It is wonderful to feel emotionally light! Absolutely recomend giving it a shot. Helps on the physical stuff too.
OK i will get off my soap box now.
Clare.
aussiebillabong <kham2601@...> wrote:
Hiya Clare/Kylie
Sorry to hear you went thru a really sad stage. I hope you are on the right track now. GP knows best! :-) Whats reki and bowen?
Over the weekend i went to a bbq, and i nearly punched a guest out. I am so sick and tired of the coughing remarks, the stares, and people who avoid me thinking i have leprosy. After i finished eating i coughed, and it turned into a 5 min coughing fit, you know where your eyes water....One lady said " Have a choking fit, why dont ya'?, i couldnt asnwer her as i was coughing, when i finished i just looked at her, and told her i had CF, and been coughing for years, and no i wasnt choking. But thanks for your concern. I dont know hows yous do it. Even when you cough in a shop, and they say something like "arent you feeling well, Got the flu have you? And they sit there and wait until you respond in a sentence, which contains more than a yes or no answer.
Wow, its great to meet another CF person. Its good that yous are firm friends. :-) .
Subject: [cysticfibrosisdiscussion] health care super support structure
Hi Kat,
Good to have several health professionals - they are all good for somthing and your GP has proved that. GP s tend to be better at listening. Glad your thyroid thing was picked up finally
I told my CF specialist I was 'really very sad' and concerned for my mental health (this was two years ago now). He shrugged it off. As one of my friends said incredulously "you walked in there and said that you had a potentially fatal disease and they did nothing!!!?". I eventually found help through a GP and it was a life saver that I did!
Now I never expect one person to have all the answers and keep several people in my health support structure with many and varied skills - reki, bowen, yoga, massage, kineasiology, western medicine, physiotherapy, natural remedies, alexander technique, feldenkras, acupuncture. All have a helpful perspective for different things and each technique is complementary to the others ie they all know about all the others and do not subvert eachother's treatment. It is good.
Yes Kylie and I have met in the waiting room and at action meetings etc. I really respect her life journey and her family's journey.
Sorry to hear you went thru a really sad stage. I hope you are on the right track now. GP knows best! :-) Whats reki and bowen?
Over the weekend i went to a bbq, and i nearly punched a guest out. I am so sick and tired of the coughing remarks, the stares, and people who avoid me thinking i have leprosy. After i finished eating i coughed, and it turned into a 5 min coughing fit, you know where your eyes water....One lady said " Have a choking fit, why dont ya'?, i couldnt asnwer her as i was coughing, when i finished i just looked at her, and told her i had CF, and been coughing for years, and no i wasnt choking. But thanks for your concern. I dont know hows yous do it. Even when you cough in a shop, and they say something like "arent you feeling well, Got the flu have you? And they sit there and wait until you respond in a sentence, which contains more than a yes or no answer.
Wow, its great to meet another CF person. Its good that yous are firm friends. :-) .
Subject: [cysticfibrosisdiscussion] health care super support structure
Hi Kat,
Good to have several health professionals - they are all good for somthing and your GP has proved that. GP s tend to be better at listening. Glad your thyroid thing was picked up finally
I told my CF specialist I was 'really very sad' and concerned for my mental health (this was two years ago now). He shrugged it off. As one of my friends said incredulously "you walked in there and said that you had a potentially fatal disease and they did nothing!!!?". I eventually found help through a GP and it was a life saver that I did!
Now I never expect one person to have all the answers and keep several people in my health support structure with many and varied skills - reki, bowen, yoga, massage, kineasiology, western medicine, physiotherapy, natural remedies, alexander technique, feldenkras, acupuncture. All have a helpful perspective for different things and each technique is complementary to the others ie they all know about all the others and do not subvert eachother's treatment. It is good.
Yes Kylie and I have met in the waiting room and at action meetings etc. I really respect her life journey and her family's journey.
Good to have several health professionals - they are all good for somthing and your GP has proved that. GP s tend to be better at listening. Glad your thyroid thing was picked up finally
I told my CF specialist I was 'really very sad' and concerned for my mental health (this was two years ago now). He shrugged it off. As one of my friends said incredulously "you walked in there and said that you had a potentially fatal disease and they did nothing!!!?". I eventually found help through a GP and it was a life saver that I did!
Now I never expect one person to have all the answers and keep several people in my health support structure with many and varied skills - reki, bowen, yoga, massage, kineasiology, western medicine, physiotherapy, natural remedies, alexander technique, feldenkras, acupuncture. All have a helpful perspective for different things and each technique is complementary to the others ie they all know about all the others and do not subvert eachother's treatment. It is good.
Yes Kylie and I have met in the waiting room and at action meetings etc. I really respect her life journey and her family's journey.
Clare
aussiebillabong <kham2601@...> wrote:
Hello
I see one of the dr's at the alfred hospital, and i dont think the guys all there. I complained for 4 months telling him theres something wrong i am always tired. He shrugged it off, so i went to my local GP, and she did some tests, and discovered the thyroid thingy. To tell you the truth, id rather stick to my local GP as she doesnt shrug me off.
Have you and kylie ever met ? Since yous two see the same doctor?
I have no idea why i thought lap dancer, i guess i was being suttle when it came to guessing your job. I tripped out out your photo, someone always has a twin, and you look like my nutrionist at the alfred, a split friggin image. Same facial features, and she has short darky blondy hair. You look great though. So colourful. I guess i wouldnt have picked you for having CF. Its a great shot!
Subject: [cysticfibrosisdiscussion] Attn Kat CF chinese whispers
Hi Kat,
About all those CF things - they sound like a chinese whisper... you know the stuff that gets passed from person to person getting a little changed along the way yet still maintaining a grain of truth. ... Ask your doctor, or official support group ... if you an't got one there in vic give the WA one a call as they are very helpful. 08 9346 7333
I see my CF doctor about every 3 months - 6months, or more often if I am trying a new treatment. We have a handsome 'fill in' doctor at the moment while the usual one is on leave. I actually look forward to having an appointment with him. lol
about my job... Entertainer... Why did you think of Lap Dancer? is that the only entertainment you have in your town? lol ... great artform if done well.
I have been a professional clown for 10 years. see some pics attached. Yes my job is fun - it is the best job in the world!
Speak soon.
Clare
aussiebillabong <kham2601@...> wrote:
Hiya Clare
My next door neighbour who is 45, Di, has the 2 neices, sometimes she tells me things about CF and i am not sure whther to believe her or not. Di was the one who told me about who her neice, any, gets her lungs drained out, and its about 1 week in hospital. I looked it up on the net, and asked my dr while i was in there last week, and he said he has never heard of it, yet di's swears this is true. She also states that all CF people have/had pot bellies due to having CF - And also Dr's licking newborn babys feet, to see if their sweat is salty. I also read on the internet , which kinda freaked me out, that most people with CF can push out their bowels with CF, if this happens the dr's have to push it back it. I fell of my seat when i read that. How gross. What else is instore with CF?
Your job sounds like fun, how long have you been doing that for? You dont know what was ging thru my mind when i read "entertainer". lol. I was thinking of a lap dancer. lol. Sorry.
I have heard of the lung suck/drainage thing but not had it done...you?
Entertainer - Clown stiltwalker fire dancer fairy storyteller
Great jobs - lots of fun. Pay is good too.
I am glad you haven't had bad experiences with the mcchuck clowns- often they are untrained performers and just don't get the subtle inclinations needed. Ha ha the hierarchy of clowns.
Clare
aussiebillabong <kham2601@...> wrote:
Hiya Clare,
What kind of entertainer? I wasnt sure whether to ask or not..as it may be a tad personal. Educator as in teacher/ lecturer?
How kewl! i bet the kids get a kick out of you being a clown. Ive seen a few at mcchucks and some resturants to entertain the kids. I think its a great idea. Laughter is the best medicine!
Just quick - I am self employed as an entertainer and an educator. Some of my clients know about my CF and some don't. As a Clown Doctor (one of my contracts) it is a mixed blessing... I cannot visit kids in oncology because of the bugs i carry, but on the teen ward patients with CF seek me out and ask questions about my experience with CF. Role model stuff I guess. Also the staff seem to respect my knowledge of the 'otherside'.
Clare
aussiebillabong <kham2601@...> wrote:
Thanks.
:-)
What do you do at work? Do they know bout your CF condition?
I see one of the dr's at the alfred hospital, and i dont think the guys all there. I complained for 4 months telling him theres something wrong i am always tired. He shrugged it off, so i went to my local GP, and she did some tests, and discovered the thyroid thingy. To tell you the truth, id rather stick to my local GP as she doesnt shrug me off.
Have you and kylie ever met ? Since yous two see the same doctor?
I have no idea why i thought lap dancer, i guess i was being suttle when it came to guessing your job. I tripped out out your photo, someone always has a twin, and you look like my nutrionist at the alfred, a split friggin image. Same facial features, and she has short darky blondy hair. You look great though. So colourful. I guess i wouldnt have picked you for having CF. Its a great shot!
Subject: [cysticfibrosisdiscussion] Attn Kat CF chinese whispers
Hi Kat,
About all those CF things - they sound like a chinese whisper... you know the stuff that gets passed from person to person getting a little changed along the way yet still maintaining a grain of truth. ... Ask your doctor, or official support group ... if you an't got one there in vic give the WA one a call as they are very helpful. 08 9346 7333
I see my CF doctor about every 3 months - 6months, or more often if I am trying a new treatment. We have a handsome 'fill in' doctor at the moment while the usual one is on leave. I actually look forward to having an appointment with him. lol
about my job... Entertainer... Why did you think of Lap Dancer? is that the only entertainment you have in your town? lol ... great artform if done well.
I have been a professional clown for 10 years. see some pics attached. Yes my job is fun - it is the best job in the world!
Speak soon.
Clare
aussiebillabong <kham2601@...> wrote:
Hiya Clare
My next door neighbour who is 45, Di, has the 2 neices, sometimes she tells me things about CF and i am not sure whther to believe her or not. Di was the one who told me about who her neice, any, gets her lungs drained out, and its about 1 week in hospital. I looked it up on the net, and asked my dr while i was in there last week, and he said he has never heard of it, yet di's swears this is true. She also states that all CF people have/had pot bellies due to having CF - And also Dr's licking newborn babys feet, to see if their sweat is salty. I also read on the internet , which kinda freaked me out, that most people with CF can push out their bowels with CF, if this happens the dr's have to push it back it. I fell of my seat when i read that. How gross. What else is instore with CF?
Your job sounds like fun, how long have you been doing that for? You dont know what was ging thru my mind when i read "entertainer". lol. I was thinking of a lap dancer. lol. Sorry.
I have heard of the lung suck/drainage thing but not had it done...you?
Entertainer - Clown stiltwalker fire dancer fairy storyteller
Great jobs - lots of fun. Pay is good too.
I am glad you haven't had bad experiences with the mcchuck clowns- often they are untrained performers and just don't get the subtle inclinations needed. Ha ha the hierarchy of clowns.
Clare
aussiebillabong <kham2601@...> wrote:
Hiya Clare,
What kind of entertainer? I wasnt sure whether to ask or not..as it may be a tad personal. Educator as in teacher/ lecturer?
How kewl! i bet the kids get a kick out of you being a clown. Ive seen a few at mcchucks and some resturants to entertain the kids. I think its a great idea. Laughter is the best medicine!
Just quick - I am self employed as an entertainer and an educator. Some of my clients know about my CF and some don't. As a Clown Doctor (one of my contracts) it is a mixed blessing... I cannot visit kids in oncology because of the bugs i carry, but on the teen ward patients with CF seek me out and ask questions about my experience with CF. Role model stuff I guess. Also the staff seem to respect my knowledge of the 'otherside'.
Clare
aussiebillabong <kham2601@...> wrote:
Thanks.
:-)
What do you do at work? Do they know bout your CF condition?
Hello, this finding is similar to a thought that has been going around my head. I always wondered how pseudomonas and MRSA disappeared from my sputum while staph went ballistic!
Bacteria use your immune system to kill each other
July 22, 2005 Courtesy the Public Library of Science and World Science staff
Bacteria don’t wage a lonely, one-on-one struggle against your immune system: rather, they deviously use it as a weapon against each other, new research has found.
Millions of bacteria live within the recesses of our noses and upper respiratory tracts, waiting for a chance to infiltrate and infect.
But long before these bacteria break through our immune defenses, they must first compete against other bacterial species to colonize the mucus-lined surfaces of our noses.
Competition between two common nose bacteria involves some trickery, according to the study, slated to appear in the Sept. 30 issue of the research journal PLoS Pathogens.
“We’re looking at how bacteria use their host, and we’ve found that the presence of one species leads to the elimination of another,” said Jeffrey Weiser, coauthor of the study and professor of pediatrics and microbiology at the University of Pennsylvania, School of Medicine.
In mice, Haemophilus influenzae—a common bacterium that infects children—stimulates the immune system to send out specialized white blood cells that attack its competitor, Streptococcus pneumoniae, the researchers found. This competitor is a leading cause of pneumonia.
“It is striking that the host’s response can so completely eliminate the competitor,” said Weiser.
The findings also demonstrate how antibiotics and vaccines that target one microbe might inadvertently alter the competitive interactions among other species present.
* * *
Send instant messages to your online friends http://au.messenger.yahoo.com
I love your description of the 'permanent sigh' it is quite true. Yes great we have one physio to stay!!
Clare
Kylie Taylor <ktaylor@...> wrote:
hes ok. same as every other doctor i guess. although i did like how he didnt stuff around with trying more oral antibiotics that dont work and put me straight on iv's. i would have killed someone if they said "oh lets hold off on the iv's"! ah no discussions from mum on his handsomeness lol. but its nice to see someone who hasnt got the "ive been here WAY too long" look though. all the senior doctors have a permanent sigh on their faces. heck, i think i might have that look soon. its good to see that holly is now the proper physio. about time we had a permanent physio. i was sick of seeing so many different people.
Subject: Re: [cysticfibrosisdiscussion] attn Kylie re Dr M Wood
Well Kylie,
now you have seen Dr Michael Wood what do you think?....
I am rather pleased. I find his manner most personable and he has breathed new life into my medical regime... and therefore I feel like I have new breath!
But tell me what you thought.
And did your mum go into coniptions over how handsome Dr Michael is? my mum did lol
Clare
Send instant messages to your online friends http://au.messenger.yahoo.com
About all those CF things - they sound like a chinese whisper... you know the stuff that gets passed from person to person getting a little changed along the way yet still maintaining a grain of truth. ... Ask your doctor, or official support group ... if you an't got one there in vic give the WA one a call as they are very helpful. 08 9346 7333
I see my CF doctor about every 3 months - 6months, or more often if I am trying a new treatment. We have a handsome 'fill in' doctor at the moment while the usual one is on leave. I actually look forward to having an appointment with him. lol
about my job... Entertainer... Why did you think of Lap Dancer? is that the only entertainment you have in your town? lol ... great artform if done well.
I have been a professional clown for 10 years. see some pics attached. Yes my job is fun - it is the best job in the world!
Speak soon.
Clare
aussiebillabong <kham2601@...> wrote:
Hiya Clare
My next door neighbour who is 45, Di, has the 2 neices, sometimes she tells me things about CF and i am not sure whther to believe her or not. Di was the one who told me about who her neice, any, gets her lungs drained out, and its about 1 week in hospital. I looked it up on the net, and asked my dr while i was in there last week, and he said he has never heard of it, yet di's swears this is true. She also states that all CF people have/had pot bellies due to having CF - And also Dr's licking newborn babys feet, to see if their sweat is salty. I also read on the internet , which kinda freaked me out, that most people with CF can push out their bowels with CF, if this happens the dr's have to push it back it. I fell of my seat when i read that. How gross. What else is instore with CF?
Your job sounds like fun, how long have you been doing that for? You dont know what was ging thru my mind when i read "entertainer". lol. I was thinking of a lap dancer. lol. Sorry.
I have heard of the lung suck/drainage thing but not had it done...you?
Entertainer - Clown stiltwalker fire dancer fairy storyteller
Great jobs - lots of fun. Pay is good too.
I am glad you haven't had bad experiences with the mcchuck clowns- often they are untrained performers and just don't get the subtle inclinations needed. Ha ha the hierarchy of clowns.
Clare
aussiebillabong <kham2601@...> wrote:
Hiya Clare,
What kind of entertainer? I wasnt sure whether to ask or not..as it may be a tad personal. Educator as in teacher/ lecturer?
How kewl! i bet the kids get a kick out of you being a clown. Ive seen a few at mcchucks and some resturants to entertain the kids. I think its a great idea. Laughter is the best medicine!
Just quick - I am self employed as an entertainer and an educator. Some of my clients know about my CF and some don't. As a Clown Doctor (one of my contracts) it is a mixed blessing... I cannot visit kids in oncology because of the bugs i carry, but on the teen ward patients with CF seek me out and ask questions about my experience with CF. Role model stuff I guess. Also the staff seem to respect my knowledge of the 'otherside'.
Clare
aussiebillabong <kham2601@...> wrote:
Thanks.
:-)
What do you do at work? Do they know bout your CF condition?
hes ok. same as every other doctor i guess. although i did like how he didnt stuff around with trying more oral antibiotics that dont work and put me straight on iv's. i would have killed someone if they said "oh lets hold off on the iv's"! ah no discussions from mum on his handsomeness lol. but its nice to see someone who hasnt got the "ive been here WAY too long" look though. all the senior doctors have a permanent sigh on their faces. heck, i think i might have that look soon. its good to see that holly is now the proper physio. about time we had a permanent physio. i was sick of seeing so many different people.
Subject: Re: [cysticfibrosisdiscussion] attn Kylie re Dr M Wood
Well Kylie,
now you have seen Dr Michael Wood what do you think?....
I am rather pleased. I find his manner most personable and he has breathed new life into my medical regime... and therefore I feel like I have new breath!
But tell me what you thought.
And did your mum go into coniptions over how handsome Dr Michael is? my mum did lol
now you have seen Dr Michael Wood what do you think?....
I am rather pleased. I find his manner most personable and he has breathed new life into my medical regime... and therefore I feel like I have new breath!
But tell me what you thought.
And did your mum go into coniptions over how handsome Dr Michael is? my mum did lol
Clare
Kylie Taylor <ktaylor@...> wrote:
i havent seen him yet. im reluctant to see another doctor and spend 30 minutes telling them my life story and medical history lol. but im a bit unwell at the moment so i dont really have a choice now. just wanted to know what he is like and if he actually listens to you.
i havent seen him yet. im reluctant to see another doctor and spend 30 minutes telling them my life story and medical history lol. but im a bit unwell at the moment so i dont really have a choice now. just wanted to know what he is like and if he actually listens to you.
My next door neighbour who is 45, Di, has the 2 neices, sometimes she tells me things about CF and i am not sure whther to believe her or not. Di was the one who told me about who her neice, any, gets her lungs drained out, and its about 1 week in hospital. I looked it up on the net, and asked my dr while i was in there last week, and he said he has never heard of it, yet di's swears this is true. She also states that all CF people have/had pot bellies due to having CF - And also Dr's licking newborn babys feet, to see if their sweat is salty. I also read on the internet , which kinda freaked me out, that most people with CF can push out their bowels with CF, if this happens the dr's have to push it back it. I fell of my seat when i read that. How gross. What else is instore with CF?
Your job sounds like fun, how long have you been doing that for? You dont know what was ging thru my mind when i read "entertainer". lol. I was thinking of a lap dancer. lol. Sorry.
I have heard of the lung suck/drainage thing but not had it done...you?
Entertainer - Clown stiltwalker fire dancer fairy storyteller
Great jobs - lots of fun. Pay is good too.
I am glad you haven't had bad experiences with the mcchuck clowns- often they are untrained performers and just don't get the subtle inclinations needed. Ha ha the hierarchy of clowns.
Clare
aussiebillabong <kham2601@...> wrote:
Hiya Clare,
What kind of entertainer? I wasnt sure whether to ask or not..as it may be a tad personal. Educator as in teacher/ lecturer?
How kewl! i bet the kids get a kick out of you being a clown. Ive seen a few at mcchucks and some resturants to entertain the kids. I think its a great idea. Laughter is the best medicine!
Just quick - I am self employed as an entertainer and an educator. Some of my clients know about my CF and some don't. As a Clown Doctor (one of my contracts) it is a mixed blessing... I cannot visit kids in oncology because of the bugs i carry, but on the teen ward patients with CF seek me out and ask questions about my experience with CF. Role model stuff I guess. Also the staff seem to respect my knowledge of the 'otherside'.
Clare
aussiebillabong <kham2601@...> wrote:
Thanks.
:-)
What do you do at work? Do they know bout your CF condition?
I have heard of the lung suck/drainage thing but not had it done...you?
Entertainer - Clown stiltwalker fire dancer fairy storyteller
Great jobs - lots of fun. Pay is good too.
I am glad you haven't had bad experiences with the mcchuck clowns- often they are untrained performers and just don't get the subtle inclinations needed. Ha ha the hierarchy of clowns.
Clare
aussiebillabong <kham2601@...> wrote:
Hiya Clare,
What kind of entertainer? I wasnt sure whether to ask or not..as it may be a tad personal. Educator as in teacher/ lecturer?
How kewl! i bet the kids get a kick out of you being a clown. Ive seen a few at mcchucks and some resturants to entertain the kids. I think its a great idea. Laughter is the best medicine!
Just quick - I am self employed as an entertainer and an educator. Some of my clients know about my CF and some don't. As a Clown Doctor (one of my contracts) it is a mixed blessing... I cannot visit kids in oncology because of the bugs i carry, but on the teen ward patients with CF seek me out and ask questions about my experience with CF. Role model stuff I guess. Also the staff seem to respect my knowledge of the 'otherside'.
Clare
aussiebillabong <kham2601@...> wrote:
Thanks.
:-)
What do you do at work? Do they know bout your CF condition?
What kind of entertainer? I wasnt sure whether to ask or not..as it may be a tad personal. Educator as in teacher/ lecturer?
How kewl! i bet the kids get a kick out of you being a clown. Ive seen a few at mcchucks and some resturants to entertain the kids. I think its a great idea. Laughter is the best medicine!
Just quick - I am self employed as an entertainer and an educator. Some of my clients know about my CF and some don't. As a Clown Doctor (one of my contracts) it is a mixed blessing... I cannot visit kids in oncology because of the bugs i carry, but on the teen ward patients with CF seek me out and ask questions about my experience with CF. Role model stuff I guess. Also the staff seem to respect my knowledge of the 'otherside'.
Clare
aussiebillabong <kham2601@...> wrote:
Thanks.
:-)
What do you do at work? Do they know bout your CF condition?
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) then this doc is going to have a head/ego swell that will cause him difficulty getting throo doorways.
