Wish me luck at Mayo!
 

Just killing some time while I scan various pertinent lab reports. I don't actually leave until Sunday, but I've got a ton of last minute things to do Thursday, Friday and Saturday, and I might not get a chance to start a post before then. Getting ready to go someplace is just about as exhausting as actually going there.

My appointment is 6:45am on Monday, which is actually pretty amusing because I'm rarely coherent enough to form a sentence before 10am. :D I've been told it's not worthwhile to try and park near the hospital, so we're going to use the free shuttle provided by the hotel we're staying at. There's not enough room in our small car for suitcases, food AND my wheelchair, so I'll just use one of the wheelchairs at the hospital (I can get around ok without one for short distances).

I've got my version of LizaJane's charts done (modified a bit because I've had lots of rheumatological tests and very few neurological). I've got a two page bio because no matter how much I condense it, I'm still complicated, and the stuff they're gonna wanna know just isn't gonna fit on one page. :rolleyes: And I recycled an old training notebook from my last job to store this stuff plus the most recent medical records so I can bring it with me Monday morning.

I got a no-frills hotel room with a kitchenette because it's easier to accommodate my various dietary restrictions that way. I'm bringing all the food from home except for stuff we have to buy at the grocery like eggs and milk. I've Map-Quested the hotel and the nearest grocery to it so we won't get lost (I'm an excellent navigator if I have a map in my hand):o

I'm only bringing four days' worth of clothing because there will be a washer and dryer at the hotel. All the same, I was shocked to find out how much room winter clothing takes up in a suitcase! I haven't traveled during the month of December since I was in college.

The forecast for Rochester is only about 10 degrees colder than Sioux Falls, but the wind chill is gonna be rotten, as in minus 30 degrees. Not exactly the greatest news for someone with Raynaud's. But no snow forecast, which is awesome for the four hour drive out there.

We're going to try to get there Sunday afternoon because I have to fast that night and need to eat my supper prior to 7pm, and it can't have any fat in it, so I'd better make it myself (the usual eggs and cream of rice). I am supposed to bring all my meds and supplements in their original containers with me to the appointment, not an easy feat because I can barely fit them into two gallon-sized and one quart-sized bags. :rolleyes: Between all the pills, the paperwork and a snack for when I'm done fasting (can't wait around too long for food when you're diabetic), I'm gonna look like I'm moving in! :wink:

As for entertainment, I really feel sorry for my husband because he doesn't like to read books and we don't have a portable computer or music player. I at least will have stuff to read, and I'm bringing a handheld Yahtzee game for both of us. :D For the car trip, I'm bringing a selection of '80's, '90's, present day and Christmas music.

One thing that has me stressed out is that my health insurance has not yet responded to my appeal for their denial of coverage for this visit. I sent my appeal on November 7th. I guess I'll call them tomorrow and see if I can get an answer out of someone because I really want this resolved before I leave.

Despite all my preparation, I am still scared to death of going to another new doctor, especially when the outcome of this appointment could affect the entire course of my medical and financial future. I've been seriously traumatized over the past decade with all the insurance denials and dismissive medical professionals. I went to three rheumatologists this year alone who wouldn't deal with me because I was on disability; how in the world can I have an open mind after that? :eek:

I think the LTD company that denied me has successfully brainwashed me. I keep thinking that Mayo is going to tell me that all my previous doctors were wrong and that there's not anything much going on with my health, as silly as that sounds. It has happened to me so many times in the past that I can't seem to banish it from my head.

Ah, late night ramblings! :rolleyes: Sorry about the vent. But I bet I'm not the only one who thinks this sort of thing, particularly when plagued with things that are so doggone difficult to diagnose.

But I suppose even answers I don't like are better than no answer at all, right? And at least I'm getting my foot in the door in Rochester.

All the same, I'll be mighty glad when it's over with.

fanfaire
:cool:

Best of luck to you. Have a safe journey and I hope you find all the answers you are going there for. :hug:

Same here.
 

I'm hoping that the medical staff there at Mayo, even with all your records and past tests, will take a look at your situation with a fresh eye (obviously, they'll be doing lots of tests of their own).

And though I know it can be hard when one is in pain, try to "present" with as much "doctorese" as you can. One of the benefits of these boards is that one picks up a lot of that lingo.

Keep us up to date as well as you can.

good luck...
 

What a stressful thing...trying to get help. Good help!

Memories
 

Fanfaire,
you know I was in the very same shoes last Dec. I hope I have sent you enough info and answered enough questions to be of some little help for you. One thing I didn't mention. Each of the waiting room areas at Mayo have computers in them for patient and their family use. They have books, puzzles and magazines. Nice restrooms that are kept clean. Be sure to wash your hands often there. So many sick people and your immune system is problematic.

I can't tell you how much I wish you some resolution to this problem.
And some help....:hug:
Billye

Good luck Fanfaire. I hope that you get the answers that you need. Try to stay as calm as possible, look the doctors in the eye when you talk to them and use the terms that we have learned here when you need to.

Been there had all the same feelings but they really help,if you
must yell help,well no don't do that,kind of like 911 heh. If your
husband is a people watcher he be looking,or if he likes sports
there;s other's there wanting to talk about that. Your going to
be tired at night honest..

Now my son said they decorate, makes people feel bettter,so if you have
time before going home take some pictures,and I don't have to tell
to layer your cloths,you do that at home..Do wash you hands a lot,carry paper towels to go in and out the bathroom door. You can always
put them in a zip lock bag if it's to hard to throw away. I'm sorry
about the insurance,please call...Good luck,and if you see some one
with a computer,smile then look sad ,maybe you could shot us a message.
Take notes if you have some time... Many Blessings to you and you hubby.
and i'm home,Bob is in his bedroom sleeping...

Hi. Many good wishes and thoughts your way. I know when I was going to Cleveland it was so draining to get ready and so much anxiety came of course with it. Try though very hard to stay in the moment. Focus on what you have to do today to get through and try to remain positive. Regardless you can't give up hope. I know at cc the shuttle service was very good and actually much better then when I drove to the hospital now that was stressful. Make sure to ask for any help you need cause sometimes people forget or don't offer. Its nice your husband is coming. Maybe there will be some good movies on cable. Don't forget comfy clothes. This may sound stupid or babyish but when I go to the hospital even if I stay at a hotel if its more then a day or two I bring my comforter and pillow. My mom said were throwing it away my comforter though if I get well she said when I get better. Its bad luck but it brings me comfort when I'm in a place like the hospital or similar. Ok many hugs

You certainly sound very well prepared for all contingencies Fanfaire.

Just wondering! I don't know that you mentioned whether you will be actually taking all your medications in the days leading up to Mayo or what advice you have been given about that! I know with my 'other' condition that if one takes their meds in the morning before testing then that will affect results of tests. Also for diagnostic purposes any specific meds for several days or even weeks before can mask the true results (that's in my other condition).

I have NO clue in your case or indeed what meds you are on. Hopefully someone else here will be much more informed than me as to your specific medications and how they affect subsequent testing. Just something to consider!

I hope all goes very well for you! :)

Good Luck Fanfaire---I'm glad you've done such good work preparing; you're as well prepared as one could be.

Megan, I don't know what you mean by your "other" condition. If this is general knowledge, then please share it again; if it is not general knowledge, I think it's rude to post this way.

Go forth and fight fiercely..or somthing?
 

Be honest, candid, don't say too much, just answer their questions. If they seem waay off base, then ASK the basic DUMB questions I'm sure you've been asking yourself for ages...the 'what abouts?' And let them do their thing. IF at any point along the way, YOU don't feel things are on track the way your gut instinct tells you they should be going...well ask about it.
Good roads and weather for the 'duration'. I for one don't think I could stand that kind of cold! BURRRR!
I am gonna keep the faith that YOU can go and get it all done that needs to be done as it SHOULD be done. And yep, you will probably be too tired to tell us too much while you are there, or, even after you are back. BUT, know that many/most of us are gonna want to know EVERYTHING! After all, it could be OUR turn next?

So for now: :hug::hug::hug::hug::hug:!!!!!!!!!!!!!!!!!!'s - j

Mayo
 

Sending you very good thoughts and strength for the trip - the tests - etc... you know you'll be seeing some great docs - and hope they can really pinpoint all that is going on - and give you some relief...

Try to stay warm - sounds like your are incredibly organized - and keep us updated if you can:winky:

You are so lucky to be going to Mayo!! And you sound very focused and very much in control. At least you will have gone to the top guys in the country. I hope that this trip will be one of the most valuable and informative experiences you can have...one that will give you more answers than you currently have. And it’s great to have someone with you who can listen and ask questions that you might not think of. Of course we’ll all be waiting to hear everything. Once again, best of luck. You'll be in my thoughts.

I am so impressed with how prepared you are! I am sure that will be a huge help and things will go fine. I will be eager to hear how things went when you finish. My best wishes are going with you. I know exactly where your apprehensions come from.... Going to new doctors makes me crazy. but you have it altogether.

Hi! Thanks for all the replies! Been busy with a dentist visit, getting the dog stocked up on his meds, talking to the dog sitter (got a special needs pup), and going to an early birthday/anniversary party. My huband's birthday and our anniversary will be Wednesday, but we'll be gone then, so my in-laws invited us over tonight. :D

The medical insurance denied my appeal for in-network coverage. They claim the Sioux Falls rheumatologist are more than equipped to treat Sjogren's, so they'll only cover the local docs. Phooey.

Called Mayo's records department to make sure the original slides of my lip biopsy had made it there. Not only have they gotten them, they have already been analyzed, so they'll be ready to discuss it with me Monday morning. Their efficiency is encouraging.

About my meds: I did of my own accord stop taking fish oil and Meloxicam a few days ago, not because I was concerned about test results, but because they can thin the blood, and I don't want to experience excessive bleeding should I require any biopsies. I am going to ask them whether anything I've been on can affect test results because I've been taking immuno-suppressants for four years along with meds for dry eye and dry mouth. But you would think they'd expect someone with autoimmune disease to be on these types of meds anyway.

Oh, I just remembered: I was told to not take ANY meds, including diabetes or thyroid meds, the morning of the appointment or at anytime in the preceeding 12 hours. But I can take them again as soon as I get the go-ahead. I'm gonna drink a Boost as soon as I get the go-ahead too so I can quell the nausea that I get when fasting.

One of the things that makes me nervous about going to doctors is that my mind tends to go blank at the worst possible time, like, mid-sentence. I will be asked for an example of something and I won't be able to think of it. But I think with having everything written out already I should be able to avoid some of that, and I might bring my husband with me to the initial appointment to help me talk to the doc if they'll allow it.

I will try and think of myself as some sort of pioneer or explorer, going adventuring through the winter wonderland that is Minnesota. :D:D And I will try to report back as soon as I am able to type a coherent sentence after getting home. :D

fanfaire,
dashing through the snow
:hug:

husband and appt.
 

fanfaire,
Not only can your husband go to the appts with you, he should. They let my husband go to every appt. I was so stressed with the whole situation it was great having him there. I hope you can have him there as much as possible.

Billye

Woke up this morning to at least six inches of new snow outside. My husband is trying to get it shoveled so the pet sitter will have a path to the front door. :D

Rochester's weather is about the same: three inches of snow today. Luckily, I think this whole storm system should be on its way out by tomorrow morning.

When I finally get all the packing done (some things always have to wait until last because you need them :D), I'm going to reward myself by watching a movie. I've got "Pursuit of Happyness" from Netflix.

About 20 hours and counting!

fanfaire
:cool:

To positively ...
 

WONDERFUL travel weather! Clear sailing and all that! Stress free to boot! Gee, what else can be said other than truly stupid platitudes?

Just knock 'em dead with all your peculiarities! There go get them thar docs's brains engaged! Can't wish for much more than that.

Gentle, warm, insulating hugs and fuzzies to you for the 'duration'! - j

Where in the world is Fanfaire??
 

Fainfaire

Give us a sign!! Are you stuck in the ice storm? Have you had any news??

Hi! I'm here, just feeling too horrible to post much. The ice storm missed South Dakota, and we left Rochester early enough to get most of the way home before the snowstorm hit.

Have some details of my trip in the post called "Fanfaire?", and I'll try to update when my pain and exhaustion get a little more tolerable. Right now, I'm too out of it to think straight.

fanfaire
:cool: