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Stupid Pots Ruins Everything


puppylove

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I got to the beach on Saturday. I love the beach. I think about our trip throughout the whole year because I feel better and I'm happy when I'm at the beach. I think it's the salt, vitamin D, lots of exercise etc. I haven't felt good this week. And today I'm doubled up and extremley nauseous in my room at the beach house. It's so not fair. I'm 16 years old I should be able to enjoy things, especially being at my favorite place in the world, but I don't. And I'm scared because before I left for vacation my doctor said he thinks I have a blockage in me because my legs retain so much fluid/ are so puffy. What's a blockage? What does that mean? Is that even POTS related?

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Where i suffered with terrible sickness before DX i had a gastric emptying scan, I also had a small bowel manomentry, which is not very nice to have done but its a wire essentially that runs down your throat to your tummy and intestines to check they are contracting and the movement is working ok. You see you can have a stomach that empties with in normal time limits, but the problem could be when you digest in the small bowel. Any number of things like this can make you very sick. Where exactly is he talking about a blockage? They thought my small bowel could have a blockage and the tests i had ruled this out.

Im sorry you are not able to enjoy being in your most favourite place, its mine too and i wished i lived near the sea for the exact same reasons as you. Can someone not give you what we call a "piggy back" in the UK, I dont know if you know what i am talking about here!!! or carry you to the beach?

Can you get a big umbrella, sit under it with a cold glass of water just for five minutes and alteast get some sea air in you? You might feel just a bit better and forget about what that Dr said to you.

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I am so sorry that is horrible and very unfair in fact this whole illness is unfair for everyone it take so much of your life away!!! I also love the beach and I went there once at the end of my worst flare and I felt so good then the next time I went I was so sick and spent the whole time in the room. I know how you feel and I am so sorry!!!

I hope you feel better and can enjoy even an hour.

Hugs to you

Pam

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Pots really can ruin everything. I know-how you feel and it totally stinks bc there isn't an easy answer. We can only do the best with what we have.

One thing I try to do is have a plan for the bad days. Things I know I like and can do without much trouble, like a movie I've wanted to watch. Or something like that to cheer me up.

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I think it's so ok to allow ourselves to be pissed. This robs us of our time, careers, money, friendships just to name a few, and replaces those with loss, Dr appts, debt, disappointment and one of my biggest obstacles - fear. I definitely allow myself to have frustrations....I read the forums and really feel so sad for all the other people like you Puppylove who are struggling far worse than I am right now. I just hold onto belief so hard. And you're young so the odds are with you. I and I guess if nothing else at least the smell of the salt air or the look of a beach town might make you smile. When I feel crappy I like to be home. But the strength that us POT's people possess is to try and find some positive. Hopefully you'll see a great sunset/sunrise or maybe a super hot guy - hehe.

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The title of this makes me smile :)

And I agree!!!! STUPID POTS RUINS EVERYTHIING!! I had one of those days, too, today-- it's actually been that sort of week for me. I totally commiserate, and I'm sorry this is happening to you. And to all of us.

I think it is healthy to recognize when we are feeling upset, angry, sad, frustrated, depleted, guilty, misunderstood, etc., and to accept that feeling and really let ourselves feel it. If I try to make the best of every situation all the time and paste on my happy face smile and pretend it's ok, I get even more resentful and down. If I allow myself to mope and brood a bit, I usually feel better the next day. We go through a lot, and we deal with a lot, and we are still here, and fighting, and waiting it out, and doing everything we can go get better and enjoy each day as much as possible.

Hope tomorrow is better for you :)

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Thanks everyone, you all understand me so well. :) Today really sucked but tonight is a little better. I went out to the beach for a little bit. Tomrrow is our last full day so fingers crossed it will be a good one. About the blockage he just said my legs are really puffy and retaining water, so it could be a blockage. I don't know what else would cause that? Relax86- I actually did see a really hot guy!! :D

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I'm so sorry to hear this!!! The hot weather/sun doesn't seem to do good things for POTS. Blockage makes me think clots - please keep an eye on that and if you feel any pain go get seen immediately in my opinion. Do you have redness and pain anywhere, and is it both legs? If its both legs without redness and pain it is probably not a clot http://www.medicinenet.com/blood_clots/page5.htm#what_are_the_symptoms_of_blood_clots.

Hoping things get better and you enjoy the beach a bit!! xoxo

Claire

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