Minnesota Mayo Clinic Pain Rehabilitation Clinic

[PirateFairy8]

This is part vent/part advice. Some of you may have seen my posts before. I am diagnosed with a very severe case of fibromyalgia with a close eye on possible MS. I live in Florida very close to Disney. On Sunday, my mom (I'm 23) and I are going to Minnesota for 3 weeks in Rochester at the outpatient pain rehabilitation clinic.

http://www.mayoclinic.org/pain-rehabilitation-center-rst/

It involves physical therapy, occupational therapy, and learning how to cope with an illness when I'm so severely affected.

I'm very nervous, I don't like this type of program because quite often there are other adults who take one look at my age and treat me badly based on the fact thatI couldn't possibly be as sick as they are. I know I am very ill, I have seizure type activity as a result of the fibro being untreated for so long, my leg gives out and I can't walk on my own very well, I have constant fevers and bunches of other symptoms that give me trouble in everyday life. I know the doctors and nurses there will understand, but I'm used to other patients being mean to me. The nurse said that sometimes they have other people my age, but it's hard to feel calm when since I got sick at age 14 I've heard "she's too young to be this sick, it's in her head."

I know the program will help, it's the only thing they could do right now. I have no idea how to pack for 3 weeks or even how many underwear or socks or anything. I don't know how often I'll get to wash clothes or what I'll get to do. I have to take both my wheelchair and my crutches with me on the plane and I don't know if that's allowed. Iknow that my anxiety is resurfacing with all of these scaries. I absolutely do not want to leave my fiance for 3 weeks, he keeps me grounded and keeps me going. I do not want to go to Rochester, it sounds boring and I have this idea that it's cold there, even though I know right now it's not. Basically I guess I just need reassurance and any advice on packing or things to do that you can give!

I know this is really disjointed, sorry about that.

 

[peemagg]

Don't worry about taking your crutches and wheelchair on the plane. It is totally allowed and the airline has to store the equipment safely for you. There will be no questions asked to the reason for it.

As far as the packing, I think I would bring enough clothes for at least a week, maybe a week and a half. This way it will be less time that you need to do laundry. I'm sure there is probably some place there for people to do their laundry. It might be sent down to a laundry service for you. I would have your name put in all your clothes (including your underwear), so that if it is sent to a central washing place they can get it back to you.

Hang in there and work hard with them and before you know it the 3 weeks will have gone by and you will be on your way home. Is your Mom staying there the whole time too? If so I would only take one week of clothes and then maybe she can do them for you once a week when she does heres.

Good luck and know that you will be in my thoughts and prayers while undergoing this. Look at it this way, maybe they can show you or teach you somethings that will really improve your life, that it will be amazing.

 

[PirateFairy8]

Hi, thanks for the reply. It helps me know I'm not crazy to be a bit nervous too! Yes, mom will be with me the whole time in case I get too sick to transport myself or something else comes up. My parents and my fiance don't want me in a strange city by myself for 3 weeks. She will only be able to help so much though, she has three herniated disks in her neck so she's in a lot of pain. Poor mom.

Will they let me take BOTH my chair and crutches on the plane though? I know I can take my chair, I just went to Disneyland with my fiance in mid-april and "practiced" flying then.

 

[peemagg]

Yes you can take both. On my last trip I had a scooter, cane, and a hands free crutch. No one even batted an eye. You won't have any problems with the wheelchair and crutches.

I'm glad that your Mom is staying with you. That will help a lot, with what you are going to go through. There is nothing worse than being in a strange place without family near by for support.

Hang in there and go with the flow as much as you can. Stress only makes conditions worse.

 

[mdvlprof]

looks like a good program. I hope it works for you.

I've found that there often are a mix of ages in rehab. No one should pick on you because you are young. It may be the opposite - people will be nice to you because a person so young shouldn't have to deal with pain.

 

[SueM in MN]

Hi, thanks for the reply. It helps me know I'm not crazy to be a bit nervous too! Yes, mom will be with me the whole time in case I get too sick to transport myself or something else comes up. My parents and my fiance don't want me in a strange city by myself for 3 weeks. She will only be able to help so much though, she has three herniated disks in her neck so she's in a lot of pain. Poor mom.

Will they let me take BOTH my chair and crutches on the plane though? I know I can take my chair, I just went to Disneyland with my fiance in mid-april and "practiced" flying then.

As the others mentioned, you will be able to take both.

Follow the link in my signature to the disABILITIES FAQs thread on the disABILITIES Board. One of the posts there is about air travel and talks about travel with wheelchairs.
You will likely have to gate check your wheelchair and store it underneath the plane. But, your crutches should be able to come right on the plane with you.

I live in the Minneapolis - St. Paul area, which is about 1 to 1.5 hours from Rochester. It's been very nice here - not cold. This time of year can go from quite warm (90s) to cooler (high 70s). It is very peasant right now though, and very green with all the new leaves and plants.

Keep in mind that patients have been coming to Rochester for treatment for over 100 years, so you will find that the clinic staff are used to people coming from out of town and will be able to help you with finding things/finding things to do.

 

[PirateFairy8]

I'm flying into Minneapolis and taking the scary tiny plane to Rochester. Thanks for the details on the weather - it's very strange coming from Orlando to anywhere else in the country! I'm finally resigned to the idea that I'm going, I still just don't want to. I don't want to leave everything I'm used to although I know it's good to do every once in a while.

 

[Momelie]

Don't they have this type of clinic at the Jacksonville Mayo Clinic? I go there for my fibromyalgia/arthritis/diabetes stuff twice a year.

If its anything like the clinic in Jacksonville, you and your mom will be treated like royalty! They will check you into your rooms, and show you where everything, including the laundry rooms (on each floor) are located. There are even kitchens and grills, game rooms, card tables, you name it, in each on site hotel. People drive the vans and/or golf carts depending on the weather to take you to your clinics/appointments, so don't worry about that, and they will also bring you back.

Believe me, when I went, I didn't even have a diagnosis - all I knew was that something was VERY wrong with me, and you know how fibro feels! Imagine if you didn't know what it was, and had all the bones in your right hand and hips fuse together at the same time. I was so scared! Everybody there was fantastic! They are very reassuring, and have a calming presence.

I'm so glad you have this opportunity! You'll do great and be back before you know it!

 

[PirateFairy8]

The Mayo clinic in Jacksonville is actually the one sending me to Rochester. I liked it in Jacksonville, but I've heard the Rochester clinic is much bigger. Rochester is the only place with the 3 week pain rehabilitation program that they want me to do.

Thanks for the info - mom and I never stayed at an on site hotel in Jacksonville so it's nice to know the type of stuff they have!

I actually did not have an official diagnosis until February, I was diagnosed with fibromyalgia but they were really worried about MS. Technically they still are, but that's on hold for a while now and I just have "the worst case of fibro they've ever seen in somebody my age" instead. Lovely, right?

I'm not actually bitter, I'm just still mad at leaving when I don't want to because lots of things are happening in June and I'm just being a pouty child again lol. Trying very hard not to be, am getting better!

 

[disneymom3]

Don't you worry at all. I know that's impossible, but I think you will be pleasantly surprised at what a nice town Rochester is. I swear it is one of the friendliest cities I have ever been in. I go to a conference there every few years and from directions to restauarant suggestions the people there have always been so sweet. One gentleman even went out of his way on his way to work to walk us through to the right part of the skyway when we got off track.

I have MS and something..maybe rheumatoid arthritis, maybe.....? And I know what you mean about feeling like people think you aren't old enough or sick enough or whatever. I felt that way before our last trip to WDW. However, the people on this board helped me to see that it really doesn't matter what other poeple think. You have to do what is right for you and focus on your own health.

 

[Dizneydawn]

I live about one hour from Rochester and you will be just fine. Our all time favorite restaurant is there (Jenpachi) and I mean a close tie to Ohana's.

We actually travel there quite often. One of friends is seen at the Mayo right now 2-3 times a week for IVIG cell procedures and she drives 2 hours each way and has never had a bad word to say about it.

Like a previous poster said, plan on 70's-90's and maybe a cool 60's at night.

Look at the bright side. You have a place willing to see you that is the best in the world and not too many people can say that. My Dad just had his leg amputated and I truly believe your mindset will determine your success. Make a checklist of all the positives for this journey and maybe it will help you let go of the parts you are frustrated with.

I wish you success.

 

[PirateFairy8]

I'm here! At least, we finished traveling today and checked into the hotel. I am very tired, mom is absolutely sick with exhaustion and pain. She cried getting onto the plane because she is so sad I'm sick enough to have to come here for 3 weeks. I am still not super happy about being here,but the pool is awesome! I'm thinking about going for a gentle swim, except the AC is on "iceberg" and even when we turn it off the iceberg setting it is freezing so I don't even want to think about showering, let alone coming in wet from swimming lol. I just thought I would update, I start at the Mayo Clinic Tuesday.