Evie

Thanks Melissa Yeh we have to have insurance and my australian uni provides insurance so i can use thiers or if i dont think that covers me well enough i can go and seek out my own. I will have to look into the nitty gritty to make sure it covers things like hospital and ambulance. In some ways its good that i have to think about this stuff (other students tend to not worry about it but if something happend to them they would have wished they did) and other times i get really jealous of the people who dont have to think about every big step so much. Im trying to get my dad to get as much visiting work in the US as he can while im over there so they can vist me. I have never lived out of home before due to not being able to work to pay for it. Thats one of the reasons i am doing the exchange because i want to prove to myself i can be independent. Im really nervous about it. I will be bugging you all for hints for coping with "being on your own for the first time" when the time comes Jacquie i will have to get you to tell me all the good cheap places to go/eat hehe. You can be my insider I am brushing up on my US history next semester to prepare. Unfortunately it does not involve learning about the Boston Tea Party so i will have to do some Boston research on my own.

Oh wow ANSWERS! thats so wonderful Ernie Let us know how your next vist goes!

Oh thanks, I will bug you for details in a few months time. I will try and avoid going to specialists as I can see them in australia for much less money but its always nice to know that they are near if i do need them. Do pcp's tend to be familiar with OI in Boston?

I am young too and i dont wear them for that reason. (well not that reason alone) Of course if i thought it would make a huge difference i would wear them. We could always wear long pants to hide them? Its just so hot in sydney in summer that i think id faint from heat. Gah you cant win can yu heh. Are they expensive? Jacquie maybe we should try them just to see if it helps, every little thing counts doesnt it. Does it help if you just wear them at night? Sorry im not too crash hot on understanding the medical NCS stuff so i cant be any help to you there.

Good luck with the ER. I hope they are able to help aliviate your pain Let us know how it goes...

Oh what a pain! Sorry to hear he refused. Are you able to go to the dr who diagnosed you? If he is the dr who diagnosed you then it seems strange he cant (or wont) fill out the form.

congratulations on being taken seriously! its so wonderful when you get support and validation from a doc. I hope he is able to help you *hugs right back*

Thanks so much for the comments jacquie To tell you the truth i am really dissapointed on missing out on Texas (i was loosing sleep over it) and these comments about Boston and BC are making me feel so much better! I realise that could sound strange as i have heard BC is harder to get into than UT (well if you are from the US i mean). Now im just working on making myself all excited about Boston and you guys are helping me alot I better not need a hospital over there or i will send my parents broke! (ok i wont really but it will still be a expensive exercise for them). I am getting insurance i will have to check that it covers that sort of stuff.

Thank you for the PM. The angels were lovely I just got back from a Green Day concert. It was good fun. I had seats as i dont like standing for a long time but then everyone stood up eeek! lucky for me i was near a concreate wall so i could squeeze between people and sit down while still having a good view. It was a fun concert. Yeh its really hard juggeling sleep/study/friends. I hope they have understanding friends, that makes the would of difference. I have to turn down offers to do things sometimes and i worry people will just stop asking (as they sometimes do). Thanks for the advice on the beds! I will have to look into it when i get over there. I am studying History. I have not decided my minor yet, i think it will be womens studies, politics or philosophy. However at boston i will most likely do mostly sociology (aparantly sociology is fairly easy to pass as long as you back up your ideas). Sometimes in history i have ideas but the formal evidence can be lacking.

Good luck! I hope they help My dr was offering them to me a few years ago. Let us know how they go for you

Thanks Sally Are your daughters able to raise thier beds? I realise that different dorms would be fitted out differently, i was worried some beds may be bolted to the floor. I will have to put on weight to get padding for the snow! eeek. I am not use to cold, well at least not in the past 10 years. I have looked up lots of details and will confirm details later down the track when its certain i am going there (will take a few months longer for them to confirm). I have stated on my exchange paperwork that i have a chronic condition, in my interview they were worried I wouldnt handle it so i dont want to make a fuss about it just yet. I personally think i have the right to try exchange just like all the 'normal' people. I just wish we could know when our POTS would flare up. I dont want to pass up this opportunity as there is a very good chance i will be fine. Its still scary though isnt it. Im glad your daughters are handeling being away from home with health troubles well

hi I went on a cruise and was fine. I mean i was not healthier than usual but i was not worse. There were episodes of feeling sea sick but i think that may be more of a personal thing than a POTS thing. I admit when i was 15 i went on another cruise and i fainted and the drs gave me a needle of some sort so i could stand up strait again. However, that was well before i got sick so i think thats just my body being freaky due to the heat. Good luck!

I just say i have orthostatic Intolerance or dysautonomia ... when i told the family about POTS they kept making jokes saying i was Potty. (Potty means crazy in UK and Aus .. im not sure if the term is used in that way in the US) I agree with Emily that its much better than name Chronic fatigue syndrome. You can see people switching off and making many assumptions when you even mention the name. Well not everyone, just a fair few.

This post makes me feel so much better! thanks My university let me know yesterday that i have been nominated to Boston college. If they accept me for exchange (aparantly its very rare that they reject us and 99% get accepted .. yet it may be more likely for me because of my lack of full time study on my record which will be a requirement to gain a visa). I was freaking out as i thought id get into texas and i thought boston would be highly competitive so i didnt expect to be going there. It seems all the aussie students want to go to texas as it has such a party image and is consider easy for classwork, i think it may have been more competitive than berkeley! lol Now im just worried about the workload. Is it common for people to fail in the US? I have never failed a class and i suppose i would have aprox a A to B average (we grade in percentages so its a bit hard to translate). However i have been doing part time and am doing three subjects next semester. At boston i will have to do 4 subjects. Luckily the grades will get translated as pass/fail so i just need to pass. I was just wondering if students get their work in do they usually pass? I guess it may vary alot college to college so i may be asking a silly question.

Hi Ernie, Wow thats a large secret and must be a huge worry for you. I dont really know what to say other than im really sorry that this is the case for you and you are very brave to face it. I think alot of us have "time bombs" ticking in our bodies but we are not aware of them thank goodness (obviously its nice to be able to prevent things, i just am talking about the emotional stress that would come with knowing that they are ticking). Do they really have to do those tests? If the drs really think there is that much of a risk then is there another way to proceed? Thank you for sharing with us. It must be so tough to have to face this. Thinking of you and sending big hugs postive thoughts your way... xoxo

Yes i get them too. I had some yesterday actually. They are really horrible. Its so sudden and such a violent pain that i tend to scream out loud which can scare people around me and be a bit embarrasing. I also sometimes see flashing lights with them too. I have seen a neurologist and its migrane related he says (which is POTS related). Good luck with your vist to the neuro! its best to get these things checked out

Its so good to hear that things have picked up for you! I hope things continue to improve and im glad florinef is helping Gosh 6:30? wonderwomen! hehe

Yes i have found a few beers can make me feel better. When i first got sick i could not tolerate alcohol as my liver was quite toxic, now its alot better. Its a bit hit and miss though as sometimes i will feel so much better from drinking and other times i will feel worse. I have put it down to the fact that my mucles relax so i am able to move and rest much more easily and also the vitamin B in beer may help my body for some reason. Maybe its just aussie beer! hehe

*cyber hug* At least see saws goes back up! Hope it picks up for you soon

Welcome Suzanne! Yay a fellow sydney sider

Hi Carmen, I am really sorry you are going through such a rough time. It must be a horrible emotional experience. You are right that the sun will rise again tomorrow (i can pretty much guarantee it!). However it still a tough situation for you both. I am sending huge positive vibes your way! xox

Hi Kim, Ive been wondering the same thing about some of my experiences. I just got my wisdom teeth out under local so was not sure if my reaction was OI related or a anxiety attack due to the fear of the drills and what not. Its so nice to know whats the cause is so we can know how to deal with it. I have asked my drs and they tend to say that illness and anxiety are interrelated. At first we have to train our mind that we are sick and to be super diligent about what we eat/do while also looking out for any stimulus that may trigger an event. However sometimes being so diligent causes us to overload on the worry. All in all the fact is that you feel bad and it doesnt make it more or less legitimate if its caused by anxiety or OI (i realise you have not said you feel that way, i just mentioned it as many people do sometimes percieve anxiety that way). Maybe you could continue treating it the OI symptoms while at the same time seeking help for anxiety? I am learning breathing/meditation techniques at the moment through a psychiatrist and a hypnotist. I have found that Hypnotism is great! I was sceptical at first but have found i can reach such relaxed states while being hypnotised that it helps regernerate my body and mind. Its like sleeping while awake but you are still in control. Of course practitioners may vary. Keep in mind the side effects of medication, im glad you have had good experiences and dont think this is the case I wish i had the answers for you. I can only give advice based on my experience. Have you got a dr you trust to not jump on the anxiety bandwagon strait away? I had CFS and i found driving really tiring and i didnt feel safe behind the wheel. Do you find similar things give you the same feeling or is it just when alone? good luck! i hope you find some answers to know how to tackle the situtation.... trying to work out whats going on in our bodies can be a full time job sometimes

What a Jerk! I have come across some not so nice teachers. When my blood pressure was really low a few years back i tried to move my exams as i could not think strait at the time. It was a business college so was supposed to be setting us up for the workforce. One lecturer said to me "You will just have to learn how to manage your time better as in the workforce you cant shift deadlines". Basically meaning too bad if you are sick, deal with it. Lucky for me the head of school was really supportive as were the other teachers. I did cry, i am hopeless at keeping the tears at bay. So good on chrissy for being able to supress them! At university i have only had supportive lecturers thank goodness. One of my tutors did tell me that there that my problems were not bad and there was a more ill person in our tutorial. I then explained to her i may faint randomly and she was like, oh really? She was not trying to be mean i dont think, i think it may have been more ignorence. The other boy in the class was in a wheelchair and had aids helping him, i am unsure what he was afflicted with though. Good luck chrissy! Is it a compulsary subject? If worst case senario you did not pass would you have to suffer the jerk again? I have had to repeat subjects before, i realise its a horrible thing to do when it is due to illness not lazyness.

Well ive tried it all ... i have tried to take it easy on a good day (the bad days still happend) and i have over done it on a good day and the bad days still happen. So dont get cranky at yourself for overdoing it, thats my advice Apart from that just do what your body wants and take it easy. I am glad you had a good day! Have you got any tablets to help you sleep when you are wired? I am on a minimal dose of an anti depressent (thats apparantly not too good at treating depression) and it helps when my mind wont shut down to sleep. On the dinner department, its really tireing being next to people you dont know and as you say making polite chit chat. I suppose if you are feeling really rotton it rules it out anyway (you dont want to be fainting at the dinner table ... ive done that before ... very embarassing). However sometimes i have found getting out can help get my mind off my body if i am able to stand and focus. Good luck with working out if you feel up for it! You are obviously the only one who knows your own body and has the best guess at its limits. Hope you feel better soon

I could send a photo so i could be there in spirit? lol Thats a wonderful idea! I hope you guys are able to make it happen... if people dont mind you could put photos up online of the event for all of us international or non ohio folk