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Mayo clinic in five days!!!


DawnA
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Hi everyone! Time flies, I can not believe that I am going to Mayo in only five days...I leave next Wed. My husband was going to go with me, but I decided that I wanted him to stay home with the kids. So I am taking a greyhound bus, the trip is around seven hours. i am a little nervous, because I have been feeling poorly and my brain fog gets bad. Also there are a lot of shady people at the bus station. The seats recline, so if I have a pillow and a blanket I will be fine. Wish me luck.

Dawn A

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Guest tearose

Hey Dawn, loads of luck! I hope the seat next to you is empty and the bus trip smooth!

I actually enjoyed being alone in my trips to Mayo. I liked to go back to my room and rest, watch movies, read...maybe you will find the time alone rejuvenating and it will allow you to focus on your tests and what questions you have.

Will you have access to the internet while there?

I don't know where you are staying but if you have the energy, there is a small manageable mall attached to one of the Mayo tunnels. Oh, are you going to Minnesota? That is what I am referring to.

Are you able to just pack and go or are you doing meal planning for the hubby and family?

Good luck as you get ready to go, tearose

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Thanks Nina, Ernie and tearose. I am kind of looking forward to my trip to MYO by myself. I always wanted to go on a trip alone, but I was planning on something other than Mayo. I am packing up and leaving...no meals for hubby and the kids. I have not been up to making very many meals. When I feel well I love to cook and make extras for the freezer. Well we have used up all of the freezer meals. SO I guess my family will live on sandwiches and pizza. They will be fine.

I do not think I will be up there very long. If he wants me to see another specialist and I have to wait a while, I will come home and go back when I have to. I am hoping to be referred to Dr John Schoeffner in Atlanta, georgia for a fresh muscle biopsy. I had a frozen one done which was abnormal, but did not yield enough information. Off to bed I go. I am tired after getting out today.

Dawn A

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Hi Dawn,

You are very courageous to make the trip alone but once you get to Mayo, you are in good hands. I described it like going to the medical version of DisneyWorld....lines, but incredibly nice, patient friendly people to help you through the ropes. I hope that you will be able to get some answers.

Safe journey!

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Dawn,

I too think that you are very brave to go alone...I would like to get more courage to do that sort of thing. Right now I really count on my mom to be there when I crash on trips! I have a ways to go to travel alone I think.

Hats off to you for doing this. I hope too that you get answers for you and your family. Please keep us posted and let us know what you learn.

And, I think it is wonderful to have time just for you, as well as time for Dad and kids to bond without Mom there.

I hope you can get comfy with your pillow and blanket and don't forget SLIPPERS! :angry:

We'll be waiting to hear from you when you get back and are up to posting.

Emily

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Guest tearose

geneva, medical version of disney world? that is funny, rather,maybe epcot center?

See now Dawn, think of this as that vacation you mentioned.

I think it was with goldicedance's trip that it was referred to as OZ.

Well, Dawn, it is a real adventure anyway you look at it.

Have you been there before?

They don't have moving walkways like disney, hovercraft like epcot or flying monkeys like OZ, but if you find yourself unable to manage walking, Mayo will give you a personal escort and a wheelchair!

At least they have the best diagnostic tools for you!!!

Four days and counting!

getting excited for you, tearose

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Hi Dawn,

Good luck on your trip to Mayo! You'll be in my prayers. ;)

Hopefully you are not too far from Mayo and won't have that long of a bus ride. :(

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Hi Dawn:

Best of luck on your trip. It sounds scary but hopeful.. I agree with the others that the alone time can be good. Although the support of others is never a bad thing either!

By the way everyone, I live about 7 minutes from the Cleveland Clinic...although I am not a patient there....I see Dr. Grubb in Toledo....however, it is starting to seem nutty to me that I don't even have a "back-up" person there....but that just never seems to work...Dr. Grubb isn't opposed to it and actually feels it might be a good thing for those frequent situations where I need immediate medical attention...I just worry about the egos of the docs at the Clinic who would clearly know that they are not my #1 guy/girl.

IF ANYONE IS EVER COMING TO THE CLINIC AND NEEDS SOME CLEVELAND HOSPITALITY, PLEASE LET ME KNOW!

Kristen

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I can not believe I am going in only two days!! Thanks for counting Tearose. I have been in a crash lately. My husband is a little concerned about my going alone. i will manage. However, I have a friend who insists on going with me, if she can make a few schedule adjustments. It will be female bonding in the land of OZ. I am hoping to get a referral to see Dr Low. My POTS symptoms have become much worse the past four months. The medications just are not working anymore.

Dawn

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Dawn, Good luck at the Mayo! Been there, done that. Bring things to do (like knitting, needlepoint, a good book) during the down times. There will be plenty of that. I hope that you are staying at the closest hotel to the Mayo Tunnel. We stayed at the Kahlor Executive Suites (not the Kahlor Grand). The hotel is really convenient; they have plenty of shuttles; they provide breakfast, have laundry facilities and the rate is not all that bad. Would advise not staying at a hotel far away but with shuttle to the Mayo--weather, driving, wait time. Boo!

Also, I wonder if you can find out if Dr. Low is even there during the time you will be there. He travels alot! His associate, Dr. Sandroni, is really good. I never met her but my internist in D.C. has spoken with her on several occasions.

Bring some munchies to keep in the hotel! Watch some good movies on T.V.

Don't hesitate to ask the Mayo to provide someone to push you in a chair if you need assistance.

You will be fascinated with the Mayo Clinic--its size, its technology, its expertise, and the other patients. It gives you pause and makes you grateful for just having POTS.

Goldie

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Hi Dawn, good to hear from you. sorry you are feeling poorly just before your trip. I think it will be great if your girlfriend can go with you...don't fight her on this! When you finish at Mayo...or should I say when they finish with you (lol)... you will probably be more tired and may not feel up to the long trip home by yourself. With someone else there you can turn some things over to her like logistics and just focus on yourself. She is a good friend to offer to go with you.

Safe and healthy journey!

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Thank you everyone for all the support,words of encouragement and advice in regards to MAYO. I have not made hotel reservations yet. I am waiting to hear from my friend this evening. She is not even a good friend, I was so touched by her generousity. I know her through a circle of friends at church and she was my daughters 1st grade teacher. She was so genuine. Even if she can not go I am touched by her generousity. There are some wonderful people in this world. SHe is a MAYO patient and goes up their for blood work. She previously had cancer.

I do not think I will get in to see neurology at this appointment. I live close enough that I can travel back at a different time. The drive is only 5-6 hours.

I am going to pick up a book on crocheting. I have been trying to teach my self to crochet. Maybe I will make a crooked scarf as a soveigner of my trip to OZ.

Dawn

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Guest tearose

Good Mornin' Dawn! Can you believe it, you go tomorrow!

You may teach yourself to crochet? That sounds like a good way to keep yourself busy and productive...I laughed at the crooked scarf idea. Will you use a "yellow brick road pattern"?

I too kinda hope your teacher friend can go with you to help you around but if that doesn't work out please do not hesitate to ask the mayo concierge for help getting around!!! They want to help you sail through the process...

I hadn't realized this was going to be a faster turn-around trip...wow. Might you do just one day? Hopefully you will get some sleep on the ride back!

Don't forget to clean out and restock your "pots daypack".

Take care and incase this is my last chance to say it...have a good trip, a productive visit and only manageable challenges!! tearose

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Dawn, I know you leave in the morning so just wanted to send you off with a bouquet of positive thoughts for the trip ahead. Whether alone or with your friend, enjoy the adventure and sail through the many tests most likely awaiting you at Mayo. Don't forget to have a plan in place when you arrive home that allows for Dad to keep up with the kids so you can rest and then rest some more!

Be safe and be healthy!

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Well I am traveling on my own and fortunately I am feeling a little better. I think I am coming out of my big crash. My hubby said they are going to have the house spotless for me. So I'm off to see the wizard the wonderful wizard of OZ.......

I'll be back!!!

Dawn a

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:)

Dawn, Good luck at the Mayo!  Been there, done that.  Bring things to do (like knitting, needlepoint, a good book) during the down times.  There will be plenty of that.  I hope that you are staying at the closest hotel to the Mayo Tunnel.  We stayed at the Kahlor Executive Suites (not the Kahlor Grand).  The hotel is really convenient; they have plenty of shuttles; they provide breakfast, have laundry facilities and the rate is not all that bad.  Would advise not staying at a hotel far away but with shuttle to the Mayo--weather, driving, wait time.  Boo!

Also, I wonder if you can find out if Dr. Low is even there during the time you will be there.  He travels alot!  His associate, Dr. Sandroni, is really good.  I never met her but my internist in D.C. has spoken with her on several occasions.

Bring some munchies to keep in the hotel! Watch some good movies on T.V.

Don't hesitate to ask the Mayo to provide someone to push you in a chair if you need assistance.

You will be fascinated with the Mayo Clinic--its size, its technology, its expertise, and the other patients.  It gives you pause and makes you grateful for just having POTS.

Goldie

I go to Mayo Monday for I guess 4 days. I don't know what to expect, can you help. I see Dr. Low. I am flying from Pittsburgh. Flying is not so good to me anymore.

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:)

Dawn, Good luck at the Mayo!  Been there, done that.  Bring things to do (like knitting, needlepoint, a good book) during the down times.  There will be plenty of that.  I hope that you are staying at the closest hotel to the Mayo Tunnel.  We stayed at the Kahlor Executive Suites (not the Kahlor Grand).  The hotel is really convenient; they have plenty of shuttles; they provide breakfast, have laundry facilities and the rate is not all that bad.  Would advise not staying at a hotel far away but with shuttle to the Mayo--weather, driving, wait time.  Boo!

Also, I wonder if you can find out if Dr. Low is even there during the time you will be there.  He travels alot!  His associate, Dr. Sandroni, is really good.  I never met her but my internist in D.C. has spoken with her on several occasions.

Bring some munchies to keep in the hotel! Watch some good movies on T.V.

Don't hesitate to ask the Mayo to provide someone to push you in a chair if you need assistance.

You will be fascinated with the Mayo Clinic--its size, its technology, its expertise, and the other patients.  It gives you pause and makes you grateful for just having POTS.

Goldie

I go to Mayo Monday for I guess 4 days. I don't know what to expect, can you help. I see Dr. Low. I am flying from Pittsburgh. Flying is not so good to me anymore.

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