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Disappointments With Chronic Illness

Posted by Connie on Sunday, June 14th, 2009 at 10:18 pm and is filed under Chronic Illness, Disney Fanatic, Family Life.
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I try my best to be positive, but there are some days when I can’t help but be disappointed with living with chronic illnesses. Today is one of those days. We arrived for our first day at Disney World. I knew that it was going to be hot of course and planned accordingly.

Instead of visiting the parks during the heat of the day because it affects the Myasthenia Gravis, I planned on keeping busy indoors and going to the parks after the sun goes down. Today we did just that, well almost. I stayed in the resort during the day, looking around and of course checking out the shopping. We ate lunch here too. I got to take a nap in the late afternoon and we planned on going to Epcot about 7 PM.

Unfortunately the minute we got outside the heat hit me and I felt terribly weak. So weak in fact that I couldn’t even use my scooter. Not good for me or for my husband and daughter. I have been going through some serious issues with the MG lately so I guess this was to be expected.

We were able to take our van to go out to eat instead. Torrow is another day and I’m using my positive attitude to think that I will feel better. I’m going to get a good night’s sleep and be sure to take my meds on time, eat right and not stress.

I’ll keep you posted on how things go. The one great thing about Disney is that even if I don’t get to the Parks, there’s so much that I can do indoors to have fun.

Disney World Helps Me Forget My Illness

Posted by Connie on Friday, May 29th, 2009 at 12:55 pm and is filed under Chronic Illness, DisABILITY Advocate, Disney Fanatic.
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When I visit Disney World, which I do often, I forget that about my illnesses. I feel that I am in a place where I can forget all of my problems the minute I pass through the “gates” and see the words, “Welcome to Disney World”.

My favorite park is the Magic Kingdom because there of the different lands, including, Fantasy Land, Adventure Land, Tomorrow Land and my favorite Toon Town. I know that Toon Town is really for preschoolers, but that’s where I get to visit with my all time favorite Disney character, the one that I consider my boyfriend, Mickey Mouse!

There are so many attractions in Disney World, but I think the one I like best is Mickey PhilharMagic. This is a 3D Movie that features Donald Duck, who tries to take over Mickey’s orchestra by wearing his wizard hat. Donald then goes on adventures that feature scenes from Disney Movies. The effects from this movie and the music always have me laughing. The music has me singing along (much to the regret of my family).

One of the best things about Disney World is that it is accessible to people with disabilities. I use my scooter due to having to walk long distances. I never have trouble getting around, including using the buses, monorails and getting into the attractions.

marypoppinsWhen I went into a remission (actually it turned out to be a big improvement and not a true remission) I wanted to celebrate. I went to Community Hall and asked what could be done. They gave me and my family passes to the VIP section of the parade that day. We totally enjoyed ourselves! We were up close to the parade and the characters stopped by so we could take photos. Disney parades are a joy to see, but to be up close and personal makes it even better, if that’s possible.

So if you are disabled or have health problems, don’t think that you can’t enjoy yourself at Disney World. You will need a place to order your Disney Tickets of course and I suggest you do that in advance to avoid waiting in line. And don’t forget to have a blast!

Disney Disability Adviser

Posted by Connie on Saturday, July 26th, 2008 at 11:34 pm and is filed under DisABILITY Advocate, Disney Fanatic.
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Do you think that Disney needs a Disability Adviser? I do and I want to be one!

Most of you know that I am a Disney addict. I’ve been to Disney World at least 300 times. We live close by are Disney Vacation Club owners so we go quite often. Since being diagnosed with Myasthenia Gravis, I have to use a scooter to get around. I can’t walk long distances any more.

I’ve come to learn that although Disney makes most things accessible to people with disabilities there is always room for improvement. I entered a contest where I can take part in my dream job for the day and win some spending cash too.

Will you help by voting for my video here? You can vote every day until September 25th. Thanks in advance!

Something is Wrong With My Kidney

Posted by Connie on Saturday, July 19th, 2008 at 8:59 pm and is filed under Chronic Illness, Disney Fanatic.
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Something, not sure what yet, is wrong with my Kidney as my new medication prescribed by the nephrologist is working. During my vacation this past week I got my blood test results. For the first time since December of 2007 my Potassium levels are normal.

I was feeling well enough to visit to the parks at Disney World though not every day. I did have to nap every day and got leg cramps and some tingling around my mouth pretty bad a few nights though. On Monday I’m scheduled for blood test for my magnesium level. It seems that if this is high those symptoms could continue.

The worst thing that happened on vacation was getting my scheduled blood test done. I didn’t know what lab to go to even after calling the front desk and my health insurance and using the phone book. My husband finally went to the concierge line and got the address and phone number of the closest lab. We tried this phone number like all of the others from the phone book but there was no answer.

We did find the place by using our GPS. When we arrived, they were packed. Not a good way to spend our vacation time but I needed this test done. When my name was finally called, the receptionist said that her boss just called her on her cell phone to say that people were complaining because they couldn’t get through on the phone. I said the same happened to me. I felt like telling her their large and profitable company needed to spend some money on a CAT6 to keep their phone and fax lines working.

We could have made an appointment if the phones worked. Instead we spent over an hour there plus the travel time to and from. That morning was wasted. I was too tired afterwards to do anything except go out to dinner.

I am glad to know that the doctor has been able to learn so much through the tests I’ve had done. Now to work on managing all the blood levels that will keep me feeling better.

You Know I’m Sick When…

Posted by Connie on Wednesday, July 9th, 2008 at 11:53 pm and is filed under Chronic Illness, Disney Fanatic.
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You can tell I’m sick when I don’t want to go to Disney World on vacation. Yes it’s gotten to that point. We’re leaving this Sunday for six days at the World, staying at a new hotel, Animal Kingdom Villas, dining at the Crystal Palace and all I can think of is sleeping.

What a pain in the butt to feel so tired and worn out from doing nothing. I’m actually dreading getting ready, especially the night before and the morning when we leave.

My husband and I have packing down to a science. We each have our own chores to do and we get everything done in a few hours. Remember we have to pack food and of course lots of medicine and supplies for me so that adds to our time.

I know I won’t be able to help him much. I know that means packing will take longer. I know I’ll fall asleep on the way there and be grumpy when we arrive. I know our room won’t be ready until 4 PM.

So you can see that I’m not into this trip if I’m already griping about packing. Maybe if we had some new Briggs and Riley luggage I could handle it better.

Ummm, I’m not so sure about that.

Napping is an Art

Posted by Connie on Saturday, April 12th, 2008 at 5:58 pm and is filed under Chronic Illness, Disney Fanatic, Healthy or Not.
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I take a nap almost every day. I have to. I can’t help it. I can’t stay awake. If I force myself I end up talking gibberish, doing things backwards and making an utter mess of my life and my family’s too.

While we were away this past week on vacation at Disney World, I really had to nap. I used my scooter to get around the parks but I still got so tired I had to sleep or I wouldn’t have been able to go out in the evenings.

My good friends came for the day with their three children and a baby that my friend babysits. We went to the Magic Kingdom for part of the day. We were there for a few hours when I started getting that melt down feeling. I didn’t want to ruin their day but I knew I wasn’t going to make it much longer. When I told them it was fine because they all wanted to go swimming at the hotel pool.

Back at the room I feel asleep on a small love seat. I was so uncomfortable, but I was so tired it didn’t matter. I could have fallen asleep in one of the baby cribs I’ve seen in the hotel rooms.

No one could believe that I slept through everyone coming back from the pool, children crying about not wanting to leave, packing up and all kinds of noise. But I did and I’m pretty proud of it :)

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