Finally got an appointment to Mayo. The appointment is 4 Dec. It's not gonna be an easy trip. Most of you know I can't sit. So we are putting a twin mattress in the back of a van and I'm making the trip on my back. We are going to take two days to get there so it will not push my ability to do it. I've found someone who is going to housesit if my little dogs can be convinced she isn't food. Hopefully we can train them to accept her before we have to go. They will probably do fine without us. They are greedy little devils and will eat anything in the way of a treat. So she will have to use bribery.

Have any of you been to Mayo? Did you have to take your own wheelchair? We are going to be crowded for space. I'm hoping they have some I can use. I can't walk very far any more. What do you know about the hotel/motels around the clinic?

Billye

4-5 months is short for an appt, I think!

I recall reading lots of posts in the past, and most were positive. One key aspect does stick in my mind and that is the attention and overall quality of evaluations depend on how diligent the key, primary[?] doc is in coordinating your testing thruout that big place. If it were me having your multiple issues, I would want to be SURE that these aspects are all going to be addressed, both individually and in concert. Further, that should past and current testing lead into new or additional directions, that it all be DONE and over with at once.

That all said, I hope that there is some sort of Patient Rep. to whom you can direct these concerns, someone familiar w/that 'system' to see that they are truly addressed and coordinated in advance. While you may not get the answer or miracle cure we all wish for, at Least, it won't be a half-done exercise in futility-with the HALF-answers to boot!

I do know this: I fervently hope and then some that something can and will be done to ease your pain. I'll keep faith that it WILL happen! I've a catch tho, I surely hope that you can give us all the true 'skinny', blow-by-blow of what all goes on there? Other than the 'blur' of test A, B or C!

Sending you a boodle of comfy fuzzies in advance to soften your way! - j

I was hobbling out of the grocery store and saw a lady using a 'Braun chair Topper' ...it's a turtle top that picks up the wheel chair[folded] and tucks it into the top with out manual wrestling! I webbed up the name and found stuff on it. I'd encourage you to check it out. I spoke with the lady who has it and found out that: a] it's great in her book, b] wasn't cheap, about 5K[completely installed, and c] couldn't live without it.

I may be joking here or not....but I would bet that Melody, the demon E-BAY shopper could probably get you a dynomite deal.. Something to think on.

Hugs 'n all good things! - j

I kid you not. right now, it's 3:40 p.m. eastern time.

it goes off in 6 hours.

Here's the link!!!!

http://cgi.ebay.com/ebaymotors/Braun...spagenameZWDVW

They have one bid for $.99 cents and free shipping.

You have to pick it up and it's located in Indiana!!!

Boy, was I shocked.

mel

You might want to get an air mattress to lay on the floor of the van; then over it, you can put a tempurpedic topper, the 1 1/2 - 2' width one. Between the two, it might absorb the shock of going over bumps. My concern is that being low to the base of the van the vibrations and bumps would need to be well absorbed. But with a charger and small TV, you might have a ride of relative royalty! I can just imagine, lying in the back of the van covered by a comfy quilt, on a really soft mattress, with a driver taking care of all the details of navigating. Could be a nice experience, done right. A martini?

Oh, the pillows my daughter calls "husbands"---you know the ones that prop up your back in bed and let you attach a light to read or watch TV by?

I'm just thinking---how can we turn this into a luxury adventure?

But really, think of the all the little details that could make that trip comfy and don't skimp on them. Try to think about what makes you most comfortable--what positions, textures of bedclothes, type of mattress, and see if you can translate that into the van.

I love it that you are going...this is so exciting...finally, hopefully, a good, in-depth evaluation for Billye! Yaaah!

LizaJane

www.lizajane.org

Yep, I'm going. A really good friend who is a physcian, pulled some professional strings and got them to re-evaluate my case and they decided they just couldn't refuse her appeal. Friends like that are one of a kind and really wonderful.

Back to you... Liza Jane, thanks for the ideas. We have already bought the memory foam topper. Even tho we are going to use a twin sized mattress, I had my husband get the full sized topper. We'll fold it and that will give me two layers of memory foam and I'll top it all with a really soft fitted sheet. As for luxury, I'm thinking a box of maybe Godiva chocolates might help. Oh and lots of pillows and a down comforter. I'm making this as easy on myself as possible.

Any ideas for the trip are welcome.
Love,
Billye

And, of course, a good laptop with Wi-Fi capability, so you can write and we can follow all your adventures--and then, once at Mayo, you can tell us what tests they're giving, what conclusions are being reached . . .and we can continue our practice of throwing stuff at you to suggest to the doctors.

When I was going for surgery, Melody recommended Dove Bars. You might try them. Maybe do a comparison for us.

And, for those not on gluten-free diets, I understand Moon Pies are to die for. (I believe those are available in Texas,, right , Billye?)

Never thought I'd hear anyone from up North refer to Moon Pies. I thought they were exclusively for the South. I grew up hearing about Moon Pies and a big RC (cola).

As far as I'm concerned chocolate is great no matter how you do it. O.K. I've got the car full of chocolate now.

Back to the serious. I've found a personal humidifier on line that the Sjogrens folks recommend. I understand it will be really dry in the rooms up there.

Billye