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Jenn - Good luck on your trip to Mayo


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Jenn,

I know you and Steph have been talking on another thread about your trip to Mayo. I just wanted to start another thread to wish you luck and give you my cheering on and support.

I am looking forward to hearing about your trip and your expereince. My doctor has just sent my records and a request to Dr. Low and I'm hoping he will see me too. Don't know how long it takes to hear, but I hope your experience is good and that you will be willing to share it with us. Too bad we can't arrange a group visit :)

Best Wishes,

~Roselover

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Thank you so much Roselover! I will absolutely let you guys know what happens.

I'm a little stressed right now b/c I am going into a POTS flare and am nervous that I will not feel well enough to go.... The anxiety of worrying about that is not helping today :)

I wish we could all do a group visit too! I think that may be overload for Dr Low though! LOL

Thank you again and I will be sure to let everyone know all the details.

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Jenn,

My husband says that if we arranged a group visit we could have banquet with big pictures of Dr. Low on each table. Hee hee.

I totally understand about your concern for your POTS flare!!! Are you traveling far? Try to keep yourself as calm as possible so not to accentuate it further. I know, hard to do. I had the same challenge with a trip I had to take just recently and I didn't do so well. My stress just made my symptoms worse. Like Steph said, remember that it is good for them to see all your symptoms.

Please know you are in my thoughts and prayers,

Roselover

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Thank you Ernie for your good thoughts..wouldnt it be nice if we could all caravan down together??!!

Roselover I like your Idea about Dr Low centerpeices!! LOL

I'm flying from CT.... Not too far but far enough..... Flying is tough when I am feeling ok, but I dont know how it would be in a flare..... I'm going to try and stay calm about it all and take it as it comes.

I appreciate you guys so much!

Your support means more than I can say in words.....

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Roselover - I forgot to add in my last post about getting into Mayo: I was put on a waiting list ..but we called every week for a month and really pursued it and pushed for an appt..... I found that if you are more aggresive about the need to get in they will listen more. Of course not mean aggresive, just in their face more than other patients so they remember you.

I know Dr Low's secretary is very nice and she was very helpful to me.

I dont think I would have gotten the appt ( or definetly not as soon as I did) had I not kept on them....

Just wanted to put that out there for you.

I hope you are able to get an appt soon..

Good Night B)

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Jenn,

Yup, sometimes 'the squeaky wheel gets the grease' in these kind of situations. (oh, corina are you reading???). It's a bummer, and I know it's not in our nature to be so assertive sometimes, but it is the only way to get the attention.

Anyway, if you are checking in one more time before your trip...take us all with you in your heart and know we are haloding you up, k? I hope that you have a worthwhile trip and safe, relatively POTSless flight...

Update us when you can...when will you be back??? We'll miss you while you are gone! B) Look out, you'll go through 'DINET withdrawal' :) he-he. I HAVE to log on here most days and when our internet went out I thought I would go nuts!

Okay, rambling, but really need to go to bed. I was hoping I might catch you before your trip.

Emily

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Guest tearose

Have a good trip Jenn!

I don't think the tests themselves wore me out. It is the schedule of back to back doctor chats and tests that you pack into one day that is tiresome... but push! This IS the time to pack a lot into your day. Just do Mayo and rest.

Ask tons of questions. Request a copy of your records. You are going through a lot to get there so do not leave any question unasked!!! Push, push, push. There is no better place, in my experience, to find much needed information!

Please get in touch with me if I can offer you any other peace of mind or support!!!

warmest regards, safe journey dear,

tearose

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Thank you so much everyone!!

I am in a major POTS hole right now and you guys just really boosted me B)

I havent been in the hole for about 2 months...good timing huh? I am praying and hoping that I will be able to make it there by Wed...right now it seems impossible, but I am going to TRY not to stress. I have been waiting for this appt for so long I cant imagine having to cancel it.

Emily - I do miss DINET when I dont have time to check in! You have all become a special part of my life and give me strength :)

Mom4 - Thank you! I have to get my mind together so that I can get my list done.

Tearose - Thank you as well!! I am not sure how I will handle the back to back visits.... But I feel better knwoing the tests are not a greuling as I am thinking.

I think the hardest part will be if I have to fast.....

I will update all of you.....

Have a great weekend :)

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