A confession of sorts About This Page:

[enadine]

Mary Ellen I hope you are still reading the boards.I now also must go in a wheelchair, back injury, and also am not looking forward to the"looks".I am so,so sorry you have this rare illness, life is certainely not what we expect it to be. I did spend our ast trip on a bech, watching and waiting for the family. But as other have said, it is a bench in Disney, the best place on Earth. Rent the ECV, have a great time, it will be hard to deal with the looks, I anticipate I'll also have a hard time, but if it helps, you will not be alone. [img]graemlins/puter.gif[/img]

[homeschoolmom]

Mary Ellen, I too hope you are still keeping up with this thread. Sorry for the late reply.

I understand your feelings about the stares when in a wheelchair, and also the feelings of not contributing. I have pulmonary hypertension and since developing that condition have very little energy and very little stamina. I cannot do even a fraction of what I used to do, at home or away from home. My husband and daughters are wonderful (which does help), but learning to accept what life has now become is a very difficult thing to do.

Acceptance will come with time. Also, learning what you can and cannot do will help your state of mind. Doing what you can and accepting the help of others in what you can't do is hard at first, but love and support pave the way to acceptance. Talk to your husband about how you feel. He is not in your shoes, but he does love you and will listen. Husbands have a tendency to want to fix everything. So when a dibilitating condition hits their wives, they have a hard time, too. The 2 of you talking it out, even crying together, can make a world of difference. I still tell my husband on occasion "I hate this. I hate living like this!" He just takes my hand or puts an arm around me and says "I know". It helps just to be able to get those feelings off my chest.

As far as the stares while in a wheelchair, just try to overlook them. Much of how we take those stares is tied up with our own feelings about our condition and wishing we didn't have to be in the chair. Most people don't mean to be rude. As a matter of fact, I found many more people at WDW (as well as CMs) to be very courteous and helpful. But those who aren't tend to stay on our minds. Try to overlook their rudeness and concentrate on having a wonderful time with your family--that's the important thing.

I'll be praying for you. Hope this has helped. Didn't mean for it to become a book [img]images/icons/smile.gif[/img]

Have a GREAT trip. We're with you, girl!! [img]images/icons/grin.gif[/img]

[jenloveseeyore]

Hi Mary Ellen!

I am reading your post and this thread, and realizing how much you sound like my mom. A year and a half ago, she was diagnosed with sarcoidosis, which is a disease that often leaves her fatigued and affects her joints, hands and ankles/feet. I would love to plan another trip to WDW for our entire family for my parents' upcoming 30th anniversary, but I know she will probably need to do it in a wheelchair. She MIGHT be able to make it through one day without, but she would probably be exhausted for the rest of the trip. Like many others have said, she appears to be a *healthy* adult.

I have not approached the subject with her, as I am afraid that she might be too proud to use a wheelchair. My mom decided early-on in her diagnosis that her state of mind was everything. And she is absolutely right. A friend of our family has a similar diagnosis but has a negative attidude about it and it has affected her much worse than my mother. I am SO proud of my mom and the way she handles her slight limitations. I know she gets down at times, but she always tries to look on the positive side of things. She did go to one support group meeting, but found that it was not for her. Some negative, self-pitying people were at the meeting (which is probably why they chose a support group) but my mom said she could not be around that mentality.

I would say to do what my mom does. Although you may not be able to contribute as much as before, thank God that you are able to spend time with your family and make wonderful memories with them. I would not dignify any stares with a response. And by all means, do what you need to do to enjoy your time in WDW. If it means a wheelchair or an ECV, DO IT!! Do whatever is necessary to enjoy your vacation with your family! They will be more thankful and relaxed if they see that you are able to enjoy yourself rather than having you sit back at the resort because you don't want to *burden* anyone.

And by the way, sending {{{{HUGS}}}} to you!! I just spent the day with my mom and gave her lots of bear hugs too! [img]graemlins/wavin.gif[/img]

[Mary Ellen]

First off, thanks to all of you. Each post here has touched me in so many ways. I hadn't been to the boards for any length of time in awhile and was shocked to see so may replies. I do know that I have to find acceptance for myself, and I do believe it is coming a little at a time.

Today an amazing thing happened to me that I would like to share. I went to one of my doctors, one of many, who isn't very nice. I had my daughter with me because she had to go to her doctor after my visit. She was in a car accident yesterday, but is all right. Thank God!

Well, after spending about an hour with the nurse practioner, who is nice, I saw the Doctor. Now, I have never liked him, but thought it was me, not him. I started telling him about some physical changes I have been experiencing and he was his abrupt self. I am having some trouble speaking correct words and remembering things is awful. The doctor said to me your having trouble remembering because your depressed. DD said to him,"You are not listening to what my mother is telling you. Yes she is depressed, but she is having trouble with saying simple words. Within 10 minutes her back of her legs swell to to size of a mellon..." Well she continued arguing with him. He kept waiting for me to tell her to be quiet, but I looked at her and said Thank you.

I know this is quiet long, but what I learned today is that my DD really does not hold any of this against me. I haven't let her down. She proceeded to tell me what part of my brain takes care of my speech, etc. and what is happening to me. I asked her how she knew all this, and she said I took biology. She also took the time to understand what was going on with me. I now know how much she loves me. More important than that, when she leaves for college in two months, she is more than prepared to take care of herself. I am truly blessed to have have her for my daughter. I am in awe of her.

[jenloveseeyore]

It sounds as if you have a very strong daughter who loves you very much! Good for her for coming to your assistance when your doctor was not giving you the attention you deserve.

Like I said before, I have a daughter's perspective on this entire thing since my mother is the one with sarcoidosis. In no way whatsoever do I blame my mom or hold anything against her. I couldn't even imagine it and I'm sure your daughter is the same! Like your daughter, I did everything I could to read up on my mom's condition using mostly the internet after she was diagnosed. It helped me understand what symptoms she might show and why.

It sounds as if you have a very loving daughter...like my own mother, you must have done a fantastic job raising her. [img]graemlins/love.gif[/img] I'm sure she will do a wonderful job "out on her own." [img]images/icons/grin.gif[/img]

By the way, sending pixie dust that she is OK after her accident! [img]images/icons/wink.gif[/img]

[Mary Ellen]

Jen -

Thank you. I think you should approach your mom about using a wheelchair on her next visit to the World. If she doesn't want to use one, I'm sure she will tell you. She may want to use one, but would be worried how it would affect everyone else, i.e. slowing you up. Maybe hearing it from you would actually be a relief to her. You sound like a very special daughter, and I'm sure, from how you describe your mom, she won't be offended if you bring it up. You can tell her that it is available IF she needs it.

[homeschoolmom]

Yeah, Mary Ellen!!! Great to hear about your doctor's visit. Sometimes you just have to grab those guys by the lapels and say "You're not listening to me." Hooray for your daughter for coming to her mother's defense.

I'm so glad for you that some of your worries have been lifted from you.

I'll be thinking about you [img]graemlins/wavin.gif[/img]

[Mariposa]

Mary Ellen- give yourself and your daughter a great big hug each from me!

My mother was always afraid to use a wheelchair- she didn't want people to look at her, didn't want to slow us down, didn't want to "embarass" us (my DSis and I).. She was supposed to use one for years, but didn't start using one until about 6 months before she passed away. I finally convinced her by explaining that NOTHING could bother me the way watching her hurt for no reason did. That did it for her. We discovered pretty quickly that on the rare occassions when people did stare they were typically staring because they were curious or concerned.. and even if that's not why, we pretended it was.

Good for you and your daughter in the way ya'll handled that doctor! Sometimes doctors don't hear their patients the way they need to, and it takes someone else backing the patient up to drive the point home. I always went to Mom's doctors appointments with her, to give her company and back-up. It gave us a lot of great talking time, actually. Those are moments I wouldn't trade for anything. Weird how the world works, huh? My Mom's illness gave us a lot of opportunities to become closer than we'd ever been, and while I'd give anything to have her back, it made me feel so lucky to have known my Mom as a person and not just strong-perfect-always-there-for-you Mom.

Anyway, enough rambling.
Alicia

[Lilyian]

Hi Mary Ellen,
I hope that as each day passes, you are able to find that day a littler easier than the one before. There is definately a transition period after the shock of discovering that you have a debillitating illness -- I went through similar emotions about 8 yrs ago when I was in grad school attemting to finish my doctorate. I was hit with an illness which I must have always had, but which was triggered at that time. During the months that the doctor tried to discover what was wrong with me, I could only lie in bed - too ill to walk, eat, etc. I was finally diagnosed with an intestinal condition to which there is no cure. This was certainly a shock to me. After I was put on meds, I began to slowly recover to the point of being able to function, but it was very physically hard for me to even walk from my car to the grocery. At first, I attempted to continue my life as before, but found that I was not getting better. During all this time, I researched my condition and educated myself as much as possible about it. I was fortunate in that I had an amazing internist who helped me in every way. He was the reason that I was able to turn that corner of accepting that I had this illness, and that now I needed to change my goals and perhaps find new ones. I ended up withdrawing from my doctorate program even though I was almost done (because the stress of it was holding me back from further recovery). I changed my goals -- I started my own business in something that I was naturally good at, and now 8 yrs later, it is thriving and we may even expand to other states. I definately had to change my lifestyle -- completely modify diet and get much more rest that someone my age normally needed. Obviously, I continued to get better (took about 2 yrs), and I am lucky, because my symptoms have really become more dormant again -- they still appear every now and then to remind me they are there. But, the whole point of my story is that although in the beginning, you feel as if your life is torn apart, you can take control of the situation by educating yourself as much as possible and finding a support system to assist you. You have your husband and daughter, and that is something that some people never even get, so you are ahead of the game there. If your memory will not allow you to do the neceaary research, they can do it for you. You need a good AND compassionate doctor, though. I would definately find a new one if I were you, and then work with that doctor to see how to minimize your symptoms as much as possible.

I hope that you pop in every now and then to tell us that things are looking up!