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Old 02-13-2012, 09:41 PM   #1
CatNipRules
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No, I'm not lazy, I have PKD.....

Figured that my experiences would help someone else.

I'm going to Disney once again. The last time we went there I was newly diagnosed with Polycystic Kidney Disease or PKD for short. Well, it was hell on earth. I decided that I was going to be "normal" no matter the cost.

Well, I learned after the first day what a mistake that was. My entire body hurt and I was very sure that I was going to end up in the hospital. Fortunately, I took a few extra hours to relax in the morning and my DH called one of the ECV rental companies and they brought one right over.

I had a few people look at me funny. Then, I overheard one person say that I must be too lazy to walk through the park. I didn't know what to say to them, so I said nothing. I went back to the hotel later that night and cried myself to sleep. I hadn't asked for this. Hadn't asked for a lifetime of pain.

The rest of that trip was sort of muted because nothing my DH did could lift my spirits.

That was almost 6 years ago. Now, my attitude has changed dramatically. I've learned that it doesn't matter what others say. It doesn't matter if they can "see" my disorder. I've learned that my health and well being are all that matter. I have a limited number of years left with my family and I'm determined to live them to the fullest.

So, for my trip in October, I'm renting an ECV from Randy's Mobility. I've already got my registration email printed out and everything. I've got the phone number programmed into my cell phone. Everything is set there.

No, you can't see my disease. I'm not asking for special treatment. I'm only asking that you don't judge me because I use a ECV so that I can enjoy my time in the park. I've also learned that most people probably aren't even paying attention to the fact that I'm in an ECV. They are simply enjoying time with their own families.

PKD sucks, but I've learned to live with it the best way that I can. One day at a time......

So, PKD is a relatively rare disease, but I'm wondering if there are any other members here that have it. If so, I would love to hear from you.
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Old 02-13-2012, 09:57 PM   #2
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Being a person with a hidden disability I know exactly what you felt. I have learned over the years to just smile at "those people" that say snide remarks. As happy face & smile disarms them right away. I have also said something like "I sure wish I could be well enough to do everything you can do, Have a magical day"
I refuse to let people like that spoil my day.
Smile, Take it easy, Take breaks & enjoy your vacation..
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Old 02-14-2012, 01:13 PM   #3
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My FIL and SIL both have PKD. Well aware!

As far as travelling at WDW on an ECV, my mom has COPD (basically, chronic bronchitis) and asthma. 7 years ago, she had 20% of her lungs removed due to a (non cancerous) growth, so to say she has trouble breathing at times is an understatement. After the surgery, we went to WDW and she missed out on so much because she spent all her time sitting on benches. She just couldn't breathe and she didn't want to go anymore.

We finally convinced her to try renting a scooter and now we can't keep up with her! She loves it! The problem with the looks from others when she's on her ECV is likely more geared toward her being overweight. (see the Catch-22 there? She can't lose weight cuz she can't breathe while exercising) At first, it bothered her because she could actually hear the rude people saying things like "she only needs that cuz she's fat." etc.... People are mean! In her heart she knows the real reason for the scooter and that's ultimately all that matters. You'll never see those people again, so does it really matter what they think?! Besides, she's at that age now where she doesn't care anymore! She's gonna do what she's gonna do and if you don't like it, don't look at it!! Love it.

Rent that scooter, race your family and friends, and have a good time. And who cares what others think. Have a great time!!!
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Old 02-14-2012, 01:47 PM   #4
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Good for you!

My youngest daughter is somewhat visibly disabled. She has cerebral palsy, which causes her to have some unusual movements and she is not able to walk or talk, although she hears just fine.
Over the years, we have heard some comments of the 'I hate it when someone gets a wheelchair to skip lines' type. First of all, we don't skip lines since most are accessible.
And, second, anyone who doesn't notice that she is disabled is just not very observant ( I can think of worse terms, but not for a family board).
Her wheelchair has very specialized seating (gel seat cushion and specially shaped back), a special seatbelt with extra straps to compensate for her spasticity, plus her feet are strapped to the footrests. I'd someone doesn't notice those things, her stick thin legs and the fact that she is signing to talk to us should give them some clue that we didn't just go rent a wheelchair from 'Wheelchairs R Us'. (in fact, her manual wheelchair cost more than my first car, plus she has a power wheelchair too).

If people are so worried about other people that they can't see what is right in front of them, it's not my problem. It's theirs.

Last edited by SueM loves WDW; 02-15-2012 at 09:35 PM.. Reason: Lots of typos
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Old 02-15-2012, 11:43 AM   #5
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I'm glad you're determined to no longer let rude, insensitive comments phase you!
We hear enough of those directed at DD Samantha's use of a wheelchair. Like SueM Loves WDW, my DD has a specialized wheelchair. Her power chair costs more than most luxury vehicles and yet we'll hear people commenting about "It must be nice to be able skip lines" Yeah, when the lines are able to be skipped, it is nice. I'm not going to lie. What I always tell people (and yes, I respond to all those rude comments) - "It sure is. After spending 6 months a year in hospital, usually on a ventilator, days and days in doctor's offices or in therapy rooms, and having so many IVs and injections and blood draws her veins have collapsed, it's a great way to get to spend 4 or 5 days of an otherwise dismal year. I'll pray for you tonight, that you never experience the pain of a disabled child or the difficulty of having to explain why she'll never dance or run or swim in the ocean. I hope you all have a great vacation. We are!" I still say stuff like this, even though DD is now 28, married, and hasn't lived at home for 5 years!
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Old 02-16-2012, 08:55 AM   #6
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Quote:
Originally Posted by CatNipRules View Post
I had a few people look at me funny. Then, I overheard one person say that I must be too lazy to walk through the park. I didn't know what to say to them, so I said nothing. I went back to the hotel later that night and cried myself to sleep. I hadn't asked for this. Hadn't asked for a lifetime of pain.

The rest of that trip was sort of muted because nothing my DH did could lift my spirits.

That was almost 6 years ago. Now, my attitude has changed dramatically. I've learned that it doesn't matter what others say. It doesn't matter if they can "see" my disorder.
So, PKD is a relatively rare disease, but I'm wondering if there are any other members here that have it. If so, I would love to hear from you.
I can't stand people who judge others. I've seen so many people who don't "get" hidden needs at all. Do what you need to do to enjoy the parks! As far as I am concerned, ignorance is a hidden need!

You might want to check out PamelaK's new blog on hidden needs.
http://www.passporterboards.com/blog...special-needs/
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