My Chronic Life

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, 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 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.

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

New Years Day was a bit of a bust for us. I don’t know what in the world is wrong with me but I feel pretty awful. I can hardly stay awake and have felt like this since Sunday.

Of course this was the day we left for Walt Disney World. Why wouldn’t that make sense? Actually I slept on the ride over so I woke up to eat a great lunch in Celebration. Then it was off to our hotel to check in.

We got a really nice room overlooking the golf course and tons of wild turkeys who have taken up residence there. When we got to the room poor Hubby unloaded the van (he never has a bell hop help him - I guess it’s a man thing). I slept a little more while he did this.

He took Peanut around the hotel to check things out so I could sleep some more and then it was off to the Magic Kingdom. It was crowded, but not so bad. We ate in Tomorrowland where we could see the Castle.

The Castle looked beautiful this year. There were lights that made it look like ice cascading down. They had a new fireworks display that was fantastic. We got to see that and then headed back to the hotel.

We wanted to get some sleep so we could enjoy the next day but I still was out of it. So we did a little shopping and then I hit the bed again. We were able to stay awake for the midnight fireworks which were awesome.

When I’m feeling better I’ll see how our photos came out and possibly post some here. It’s tough taking photos of fireworks. I had a great time even though I didn’t feel well. I always do at WDW!

Yes people are still shopping! Me too. I’m looking for bargains. People who have gift cards are ready to use them. There’s sales everywhere. And guess what? Our eBay store is having a sale!

We’ve also been interviewed by Avid Cat so we’re hoping for some extra traffic and sales from that. Avid Cat is a store directory that’s free and helps direct traffic to your online store.

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ShawnsBidness Collectibles sells Disney items, clothing, antenna toppers and souvenirs. We also sell Die Cast Cars and Vintage Americana. We offer advertising spots on our website Shawnsbidness.com where we also have free eBay advertising for eBay listings.

We love eBay! We’ve been sellers for a little over four years now. Why not take a look and see if there’s something you didn’t get for Christmas. We accept eBay gift cards too, hint, hint…

Christmas is the biggest, most celebrated holiday in my house. We start decorating Thanksgiving night. And we just love everything there is to do with the meaning of the day and the season. Yes we believe that the real meaning of Christmas is Jesus’ birth.

We go all out on Christmas. There isn’t a room in our house that isn’t decorated, even the bathrooms. Call it gaudy. We don’t care. We have  three Christmas trees. One is real, one was made by Hubby’s grandmother (ceramic with lights on it) and one is for Peanut (a pink Disney princess tree). We have stockings with our names on them and stocking holders.  We have an old fashioned train set that goes around the real tree.

My favorite collectibles are snow globes. We have three mangers. One is made of wood with beautiful ceramic pieces. That’s the center piece of our shelf. There’s lots of candles, wreaths, door knob hangars, M&M figurines, Christmas tins, etc. etc.

We always go to Disney World around the Christmas season. The decorations there are unreal. Just visiting the hotels to see their trees and gingerbread houses is fun.

We donate money and gifts to certain charities. One in particular is Samaritan’s Purse. Our church takes part in the Shoe Box Ministry. That’s a lot of fun to do.

For our family plans, an advent calendar is a must. Peanut likes to count the days down to the special event. We cover Baby Jesus in the mangers and take the cover off on Christmas morning as we sing Happy Birthday.

Church events are also a major part of our holiday time. Christmas Eve we have an Italian Fish Dinner. The cooking and planning for that takes a long time but it’s all worth it.

So far we haven’t decided on presents but that’s a minor part of Christmas for us. We enjoy giving gifts to our children, family and friends but being charitable, sharing the true meaning of the season and honoring that meaning is what makes it special to us.

I’ve missed posting here for a bit. My Uncle who I love very dearly and was very close to passed on Friday September 7th. It was a complete shock. We’re just heartbroken and still grieving.

We (hubby, Peanut and I) had tickets to attend Night of Joy at Disney on Saturday September 8th. We also had a hotel room reserved. It will be pretty easy to get our deposit back from Shades of Green. We have to fax  them the info from the Funeral Home.

But I told hubby we’d never get our tickets refunded. He called and explained our situation and lo and behold, our tickets were refunded just like that.

Thank you Disney for caring.