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I Guess This Is Goodbye....


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Yesterday I went to see my POTS doctor. And he said that for me, not all of you here, but for me personally, its not good for me to be talking to other POTSies because of the way i am. He thinks that it will be best for me in the long run, if i try and not think about POTS and being sick, and just focus on recovery. He says that because of my personality and want for learning, that researching on POTS and talking about it with others, will only make me sicker. I am very intuned to whats going on with my body, and im very smart in the sence of knowing why things are going on, in fact he jokes that he will hire me when im older after college and i can work with him in finding a cure for POTS....which indeed i would love to do, since i want to be a doctor anyway. But anyhow, since im so interested in medical knowledge and all, he thinks that i will almost become content with being sick and not have a drive to get better, and just be ok with not having a life at my young age, which neither he or i want to happen to me!

So i guess i have to say goodbye to all of you, I just want to thank you all for welcoming me into this wonderful family, and for all your support and knowledge, i will truely miss you all! I will try and pop in everyonce in a while to get updates one everyone and let you know how im doing. Again thank you for all your help, you have truely made dealing with this illness so much easier on me, and even though i wont be able to talk to all of you as much anymore, i will still know your here, and that is a comforting feeling that reminds me that i am not alone in this. Good luck to you all, and god bless you!

~Mary~

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I kind of know what you're talking about. I only get on this website during the day. If I get on late in the evening, I get excited/nervous about the stuff I'm reading and get adrenaline circulating so it's hard to settle down to sleep.

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Oh Mary-

It's important to find a balance between living your life and getting obsessed about your illness. Your doctor can make any recommendation that he/she would like....but YOU have to decide what works for you. Maybe just check in if you have a specific question. Or, if you want to know if anyone else has experienced something. It doesn't have to be black or white. There are many shades of gray. And, maybe checking in occasionally would work better for you.

Regardless, you're a sweetie & I've enjoyed you. It's fun to have a young person's perspective since so many of us are raising young people with autonomic problems.

I wish you all the best!

Julie

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Mary~

I'm sure I speak for everyone to say that we are glad that you've found us and we wish you the best! I know from my experience that when I first got sick, I would be on here most of the day and from reading too much information would worry myself sick. We all have such different cases

and it takes time to find out just how to read your body to find the right regulation of medication and non-medicational therapies to start heading in the right direction.

Stop in from time to time to catch up and read the latest info. Best Wishes~ Nicole

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Thanks guys,

I think your right, this deffinetly doesnt need to be a black and white situation. When i have a question that i think you guys would have good answers for, i can post it and get the information needed to help me get better, and still not be thinking about being sick all the time. Thanks for all the warm wishes!

((hugs))

Mary

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Mary,

I can certainly identify with a sudden explosion in your knowledge of a condition influencing how you percieve your health situation to be. Sometimes listening / reading about others' health problems can seem to magnify your own and spending too much time focused on any one thing is not usually a good idea.

When I first joined this forum I read a lot, then I went away for many months before rediscovering the site and becoming an active member.

There are lots of members who have periods of intnese activity on the forum, then are busy with other things or are too ill to post. They are always welcomed back and we love to have updates as to how they are doing.

Perhaps some time doing other things would be helpful to you, but never forget that the forum will be here for you whenever you need us or just fancy catching up with the latest news.

Take care,

Flop

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Flop,

What you said pretty much sums up my plan, even though my doc said its not good to think about everyday....i think that is actually imposible, however i can not think about it as much, and not let it define who i am, which is perhaps the road i am heading towards.

I will still check in to see how everyone is doing, and maybe when my doctor thinks it "safe" i will post a little more....or hopefully this wont happen, but...if im not better by the time im in college, then restart again, because I know what limits need to be put on things, and how far is too far, honestly i havent reached that yet, but my doc and parents are worried and so for them i will cut back drastically as i do not want to be in a fight with them as that WILL make me sicker. But as i was saying if im still sick in college i could then start posting again more frequently, as i really think that its a big help in feeling better and NOT thinking about being sick, but these people just cant see that...

Thanks for all the support you have given me, I will try and keep in touch,

Mary

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Hi Mary,

I must say that I disagree with what your doctor says. Although I don't know your exact situation how can your doctor possibly think that a person dealing with symptoms everyday can "forget" about having an illness. I think having supporting people who understand what you are going through is key to managing, or at least for me personally that helps a great deal. I support whatever your decision is, but make sure it is your own decision not someone else's. Goodluck!

Jacquie

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I know what you mean, and for the most part i think you all are right. It really cant be my own desision since, im only 15 and my mom thinks the same as the doctor, she did before he even mentioned it. So as much as i think its wrong, i have told my mom and voiced my oppinion on how i feel and she still thinks otherwise, and i guess it all boils down to the fact that im still just a kid and i have to do what they say. But as good as my doctor and parent intensions may be, we all who deal with this know that really it does help to have these people.

I do see what he means when he says he wants me to forget about it, but how can i when im always in pain, or always haveing to take meds....which he ordered! Not that im against them they help a great deal, but its like how does HE think i will forget it when im popping pills every two hours...

I dont know and this all only happened yesterday, so i havent fully gotten my thoughts rapped around it all, but im hopeing i can find a happy medium.

Also he thinks that i should have a good social life, which is a good idea, however i have never been very social, i have always been the kid who maybe goes out with friends once a week, and im very into learning and thats what i enjoy, so when i get bored and my leg hurts i try and figure out why, but to mom and doc thats bad and then they think im overly obsessing, when really i dont care about the fact that MY leg hurts i just find it intersting, i dont care if its my leg or theirs i still find it interesting, i just know when my leg hurts.

It also may be that i am a very un-ordinary teenager, or human to be frank, and im quite difficult to "figure out", so i think when they all think, o this is bad she is way too into all of this, im really not. there is a saying about how the mother knows best, and the docs always ask her stuff and say well she is your daughter so you know her the best, um no. i dont feel like my mother, or any other person, except for one friend of mine, actually has me "figured out". So i dont feel that the doctors get to know ME, because well no one has yet really, and so what my mom says isnt really what goes on with me necisaraly.

The other hard thing is, i do trust this doc alot, because he is someone who i think actually can read me better than others, perhaps because we are in fact alot alike, but i dont know since he actually can see who i am somewhat, i will trust his judgement more than others.

Ok im done babbling on.....clearly im having trouble sleeping as right now everyone else in my fam. is sleeping....fun old POTS! haha

Well i hope i can figure something out, so that i dont have to stop messaging here, but if not, its great to have you guys on my side, and even when im not here, i still know you all are here for me if i really need you, and i want to say thank you for that, it means a great deal to me.

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Hi Mary

First of all, please never forget that your condition is yours, not others.

Having access to knowledge should never be prohibited, but there is always a positive and a negative side of everything. This means that too much is not good for you and the contrary is not good for you too.

As you are only 15 years old, it will be difficult for you to know when to stop reading and talking about it and when to enjoy life without worrying about dysautonomia. (But, as mentioned before, we can never forget our illness because it is within us and we can feel it everyday... )

Being aware of when we are getting too far and are getting too involved is even difficult for myself (and I am older than you).

With regard to the information you read about POTS, it can be positive and negative for your condition.

A knive can be useful if you want to eat meat, but can be a danger if it is used to stab someone.

You can use the information you obtain to share doubts and learn from other?s experiences. But you can also feel down if you are not able to cope with all the information and know exactly how to manage it.

I can understand both positions, your mother (& doctor) and yours.

I am sure they want to avoid that you get too involved and worry, which can worsen your health.

Even though, may I recommend something?

Try to learn the most you can about your health condition. What can benefit you and what can harm you. Then try to enjoy your life by being aware of your body?s reactions.

There is nothing more important than knowing ourselves.

You are the only one who will know if this or that can worsen your situation.

Time will give you the answer as to when to return to the forum and to surf the net to read more about POTS.

You will know when to continue.

In the meantime, take care and enjoy.

We will be here, whenever you need some help and thanks for sharing your thoughts and doubts.

You are always welcome.

Love,

Tessa

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Mary,I feel the posts before mine, say it all,so I'll just wish you the best Pat

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It's been nice chatting with you here Mary. Do stop in and "see" us every once in awhile. I can see how reading excessively and getting "too absorbed" here can make you worry and think about POTS too much. However, this is also a great place full of wonderful information and even more wonderful people. I do hope that you pace yourself, and allow yourself to come back now and again to touch base, let us know how you are doing, and ask any questions or pick up additional info. No matter what, stay positive, know you have a support system here, and good luck!

All the best!

Lauren

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I was given the same advice, by doctors at Mayo Clinic who didn't think I was really sick. They told me that my problem was simply deconditioning, because I was too weak-minded to tolerate the ordinary discomfort associated with exercise. (Okay, I used to be a martial arts student and had sailed 1000 nautical miles against the trade winds in a small boat, but I couldn't handle ordinary discomfort? Did they listen to nothing about my history?) They said I should stop thinking about being ill, and stop talking about illness, and stop having my blood pressure measured, and magically I would stop suffering. My problem was inaccurate thoughts, not dysautonomia. Just think happy thoughts, Tinker Bell, and you can fly?

Later, I went to Mt. Sinai, where they said I had a "florid" case of POTS but that I was managing it so well (because of all the stuff I learned at POTSplace) that they couldn't do anything further to improve my care.

If you are really sick, then refusing to think or talk about how sick you are doesn't do any good, in my humble opinion.

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i'm with LT on this one.

Being a teenager is all about realizing your place in the world, realizing that you're not as alone as you may feel sometimes--stop by when you need to be reminded that your symptoms aren't that weird or unique; you fit in here.

Nina

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Lthomas,

I know what you mean, however my doctors do believe i am sick, they just think that i will get better easier if im not dwelling on it, now i dont agree with them entirely on this matter, as i think these forums help and are great for a wonderful support system. But i do agree with them in the sence of, yes we are in pain all the time however its not the kind of pain taht is caused my something actually being wrong i.e. my leg isnt broken, it just is hurting because my body is goofy from the pots. So for this pain we just have to push through it and try and stay as active as posible.

They tell me that i am deconditioned too, which im not so sure about, i think my lungs and that kind of thing are, but i am still VERY strong, as i used to be a gymnast, track runner, and dancer. So i have a very strong body still, and am stronger than all my friends who are still active. So i think its a relative comparision, like to how i used to be, not to others, so you cant compare yourself to other people's, just your own. They gave me the impression that i was not very pain tolerent, when i KNOW that isnt the case as i am quite pain tollerable.

I dont really know what to say, as i think you guys are right, and my mom and the docs are wrong in saying that this is actually bad for my health, but they dont realize that im not overly obsorbed in pots and being sick, i just enjoy learning about it, as medicine is what im interested in. However, i have to do what my mom says, so i guess that means no more forums for me, for a while at leaste, when it doesnt change anything and i dont get better from not getting help and support from you all, maybe i can convince them to let me come back on a more regular basis.

Take care everyone,

Mary

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Mary,

I've been one of the folks that flop mentioned...usually very, very active on this site. This is the first time in two years I've been 'away' for an extended period for the most part. Mostly b/c of other life circumstances--not b/c I am better!

However, I was drawn so strongly to your post. I have not 'met' you yet, b/c I've not been on much lately, as I just mentioned.

BUT, I just don't think it is the doctor's place to say that you 'should not' participate in this forum. He is not a psychologist.

I cannot, absolutely cannot, imagine surviving this illness without this site. I've been able to spend some time away lately, but for the most part it has been a daily part of my life for two years now. And before that NDRF was.

I find this site invaluable for many reasons:

1. I have met incredible friends

2. The support is amazing

3. I feel less 'alone' here

4. I learn a LOT

5. I can give support to others who are going through something that maybe I have experience with so that they won't have to suffer so much

6. My doctors don't know EVERYTHING. Often DINET members have helped me problem solve things that no one else did.

7. My ANS doc actually asked me to go on DINET and see how other members were repsonding to Mestinon (as it is not a drug he uses).

8. I can always find info. on other's experiences with medical, emotional and spiritual issues that accompany being chronically ill.

There's a balance. And sometimes it's a hard one to find. I miss being here as much...a LOT....but I also love what I am doing now with my time (blogging).

DINET is still a part of my everyday life in some way--whether it's through emails with friends here, friends here who read my blog, checking in on the site to see how someone is doing, looking up how people responded to neurontin (I do a lot of searches)....etc.

I don't know....you have to decide what is the right balance for YOU. And sometimes we need times away and times when we are here more. As flop said, we come and go for various reasons and we are always welcomed back.

Whatever you decide, best on your healing journey.

Emily

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Hey Emily,

Its not just the doc, its my mom, she is really against it too, along with the rest of my family, and as much as i want to, i know that its not a good idea to go againts what she says i can and cannot do, so i guess i wont be posting for a while. Maybe, and hopefully she will figure out eventually that it really is only posative, and that its not making me sicker.

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hey girl,

you do what you need to do to get focused in dealing with POTS. it can get too easy to get wrapped up in all this, and to focus in too much on all of it, which can sometimes make you feel worse - so i know where your doc and mom are coming from. on the flip side, when it is hard to "ignore" symptoms or how you are feeling and not so easy to stuff in the back of your mind, it is nice to have people to talk to, who understand, who can relate, to what you are feeling/going through.

BALANCE is key.

I would caution you from throwing out this site altogether but I would also caution you not to be on here every day - find other things to do with your time, piano, drawing/painting, reading, something, so you can detach from reading comments/info about POTS -- living with POTS is enough already to have to deal with, let alone reading about it every day. it's good to keep in touch though, every now and then.

ultimately you still need to be respectful of your mother's wishes, not so much the doc, but your mother -- obey your mother, mother's tend to know what's best for their daughters/children -- we dont know you as well as she, and there may be very key reasons as to why she feels it is best that you arent on a site that is constantly focusing on your illness -- people handle situations and circumstances in life very differently, and in your case, it might not be wise for you mentally, physically, or emotionally to be absorbed constantly in convo's about various symptoms/struggles all the time - heck, for anyone, it's not very healthy.

it IS healthy however to recognize when you are having a rough spell with symptoms and to be able to have an outlet to properly deal with the emotions that come with dealing with illness -- whether it be here to talk to people who can relate personally, or with your mom, or psychologist, pastor, whomever -- just make sure to find a support system so that you are able to have an outlet when need be.

take care sweetheart. you're going to make an awesome doctor some day!

keep focused!

....Because POTS wont win,

-cardiactec.

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You've gotten great feedback. I didn't read through it all, but I agree with what many have said that you need to do what is best for you. I believe your physician is a little out of place to suggest that using DINET will negatively affect your health. My experience is that physicians are too often very eager to provide mental health guidance when it is not their specialization.

For me this has been a great resource at the times that I am "down" with POTS symptoms. I have a greater understanding and less anxiety about my symptoms due to DINET. And I have some great cyber friends who understand and share some of my POTS experience. I also love to be able to "give back" by providing support to others here.

Balance is important of course, and I also find that I have to take DINET-breaks.

Take care and best wishes for recovery!

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Thanks,

I feel that a huge part of making me feel better, and almost useful, when i feel so sick i cant even do stuff, is helping other people, and giving advice. I have always loved to help others, but now more than ever i have a much greater empathy for people, and some days i feel like im not even making a difference or doing anything in my life anymore, and so being able to come and give advice makes me feel better and feel like i do have place in this world, even when i am sick.

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