Getting The Golden Ticket – A Guide To Surviving The Happiest Place On Earth


I just got back from a Disney vacation.  Actually, let me correct that…I just got back from a Disney vacation for 6 days.

I just got back from a Disney vacation for 6 days in the coldest freak weather Florida had on record. 

I just got back from a Disney vacation for 6 days in the coldest freak weather Florida had on record AND had flights that would bring a grown man to tears. 

I guess you can all see where I’m going with this….when the idea of a vacation at the “Happiest Place on Earth” was first brought up to me I laughed so loud I woke up the 3 year old….then I realized my husband was completely serious.  The idea alone scared the bejeezuz out of me.  Don’t get me wrong, we have done Disney before but 2010 hasn’t been the kindest year to me Lupus-wise.  In fact, in 2010, Lupus has smacked me across the face, body slammed me into the sidewalk and kicked me into oncoming traffic.  Dramatic?  Probably.  But those of you who know what chronic pain feels like, know that I’m not too far off from the truth.  How was I going to function?  How was I going to walk what seemed like less of a trek across countries from the World Showcase, and more like a trek from across countries from across….well, other continents?  How was I going to stand in lines for hours, my back screaming, my joints swelling and my muscles failing?  I thought about protesting but seeing the cherub-like excitement (yeah I said cherub…I like to enhance my memories somewhat) on the faces of my children shut me up fairly quickly.  Somehow I had to make this work.  I would make this work…or die trying.

I think for 9 months I blocked it out.  It wasn’t really coming if I didn’t think about it, right?  I felt horrible for dreading it.  This was a family vacation….we were making memories for our kids…something for them to hold onto and remember when they are teenagers in a couple of years and think I am the devil and have the intelligence of a box of paper clips.  I couldn’t help it, though.  I knew what was in store for me and knew how much I would pay for every glimpse of mouse ears that we got.  Spoonies know what I’m talking about….I like to call it “autoimmune payback”.  Whatever checks my determination was writing, my body couldn’t cash without weeks of subsequent bed rest and pill popping.  Quicker and quicker the day came and I found myself having Animation-Induced Panic Attacks.  In anticipation of what lied ahead, my Rheumatologist almost tripled my Prednisone.  With that much steroids in my system, I feared for Mickey’s safety and the security of those around me at Space Mountain.  Prednisone makes my mood spin around faster than the Mad Hatter’s Tea Cup Party ride.  It wasn’t going to be pretty.

The day finally came and I woke up feeling like I had just gone a few rounds with Tito Ortiz in a UFC grudge match.  Sock by sock, I packed slowly and we headed for the airport for the first leg of our flight which was interesting to say the least.  It started out with wine at a café in the smallest airport known to man.  I seriously think the entire operation could fit inside of my house and have room left over for parking. You know you’re in a small southern airport when you’re served Sutter Home in a plastic red solo cup.  *insert favorite Jeff Foxworthy “you might be a redneck” joke here*  I had been hurting all day, smiles to the world but tears when no one was looking…you guys know the drill.  This was my vacation so of course, in grand autoimmune disease fashion, a flare up tapped me on the shoulder and said “I gotcha, sucker!”  I was popping medicine like they were narcotic-laced Chicklets as I boarded the first flight that I like to refer to as “Oh God why did he have to sit next to me?”  When Spoonies are hurting we want two things….quiet and quiet.  No such luck to be had.  I heard all about his daughter and her 16 year old opera singing self as I frantically searched for my iPod for some Motley Crue to deliver a good dose of shut-up.  I knew the journey couldn’t get much worse.  Oh how wrong I was…karma was laughing hysterically at me while my son played a game of “Who wants to see me drop my pants in the Charlotte airport?”

After a delayed flight and a 4 (yes, you read that right) hour layover, we finally boarded our second flight and arrived in Orlando at about 1:00 in the morning.  As you can imagine, everyone in the Kennedy party was just super pleasant and chipper at this point in the trip, *insert eye roll here* and all I could think about was that we had a character breakfast to be at around 7am.  By my calculations, that translated into roughly…ohhhh about 2 hours to plot how to hook up a coffee IV drip and angrily pelt Goofy with biscuits from the buffet.  As suspected, rolling up into the hotel at 2am provided just enough time to doze for 10 minutes as my daughter assumed some sort of spread-eagle yoga pose across the mattress I was laying upon, giving me exactly 4” of bed to curl up on and wait for the magic to begin.

Now that I have ranted for a page and a half, we come to the real point of my story.  My friend and fellow Spoonie, Carly spoke of a secret that forever shall hereby be known of as “Willy Wonka’s Golden Ticket”.  She told me about a magic card that would undoubtedly be my best friend the whole trip.  I was skeptical, but followed her instructions to the letter and after securing a wheelchair for the whole trip, wheeled myself right up into City Hall (otherwise known as Guest Relations….pffffft, Disney is so dramatic…) and explained my situation.  I tearfully (not joking here….I really did cry.  Not sure if it was because of pain or lack of sleep, but it happened, so there ya go…) told them of my battle with Lupus and how there was no way my body would allow me to walk across the parks much less stand in lines for hours.  With a knowing smile, Jonathan (I’m determined to write this guy into my will…) pulled out a red and white card and signed it over to me.  Now pay attention here, Spoonies, and write this down for future reference:  it is called the “Guest Assistance” pass.  This pass not only allows you to by-pass the lines, it allows up to 5 of your guests to follow right along with you.  No muss, no fuss, no lines, no crimes.  I have to tell you all that it was the greatest thing ever invented beyond Reese’s Cups.  We never waited longer than 10 minutes for a ride or attraction, and even that was a rarity.  You see, there is a separate entrance for the Golden Ticket holders and I was totally channeling Veruca Salt by the end of the trip. 

Kids, here is the part that we, as Spoonies, are used to…the part that no matter how much awareness comes into the mainstream or how many dollars are raised will probably always overshadow us:  As I was wheeled into the special entrances, I got the infamous dirty looks and under-the-breath mutterings.  You know how it goes…say it with me… “but she doesn’t look sick!”  I knew it would happen…I mean it always happens…but it never stops stinging or feeling like a slap in the face, regardless.  No.  I don’t look sick…and miraculously sometimes I don’t act sick either.  A lot of times women in their first trimester of pregnancy don’t “look” pregnant but that doesn’t make them gestate any less than having an invisible illness makes me hurt.  Unfortunately as a misunderstood member of society, Spoonies are used to snap judgments and dirty looks.  Sometimes we can look the other way, sometimes we get mad, sometimes it makes us cry….but it always hurts.  Always.

The rest of my trip was a blur of early morning breakfasts, cold temperatures, purple toes, roller coasters, six-foot mice and unforgettable memories of the beaming face of a 3 year old who met and hugged his hero, Buzz Lightyear for the first time.  At that moment, after 45 minutes of waiting in a character greeting line, all the pain, frustration and loss of spoons melted away.  His face said it all and was worth it all…Golden Ticket or no Golden Ticket.  Nobody is promised tomorrow.  None of us knows what the future holds for us and this is especially true for sufferers of invisible illnesses.  I could beat this evil monster called Lupus and grow into a very feisty gray haired old lady with an impressive ability to use a cane as half a pair of nun chucks….or it may someday get the best of me.  That’s the hand I’ve been dealt and I have made peace with it.  I dreaded my Disney vacation with every fiber of my being but a man in a white and purple space suit and a smiling little boy with a mop of blonde curls changed it all.

It was worth it and I’d do it again in a heartbeat.  There’s always provisions that can be made and shortcuts to take when it comes to making lasting memories with your family. My kids deserved nothing less than the best of what I have left to give….and they got it.

I’m just a Spoonie cleverly disguised as a normal 30-something mom of three.  I don’t look sick…and to whoever ever says this loudly, under their breath or thinks it silently, I say:

Thank you.

My secret is a steady supply of family support, “friends in the box“…..and maybe even a touch of Pixie Dust.  Because when you “wish upon a star”….anything can happen.  Even at the Happiest Place on Earth.

Article written by staff writer, Stephanie Kennedy.

About Stephanie: I live in Fayetteville, NC with my husband and 3 always hyperactive and occasionally adorable children. I was diagnosed with SLE in 2001 at the age of 27 and in the time since, have added Scleroderma, Hashimoto’s and Celiac disease. In my day-to-day life I am a Community Relations Specialist (aka, marketing and creative hodgepodge facilitator) and part-time fitness instructor. For the past two years I have served on the Executive Steering Committee for the LFA’s Fayetteville Walk For Lupus Now event.
  • Alexandra

    We love Disneyland Anaheim. We grew up near there and consider it our church. We went for every Birthday, event and just because we can day all our lives. When I asked my soon to be 80 year old Mom what she would truly love for her 80th, Disneyland it was. I had just had 4 neck and arm surgries and was in cast and neck brace and she was not up to walking more then her apartment required. She was not frail yet, very strong and healthy but had terrible arthritis that she worried would ruin her dream trip. I went online and researched how we with disabilities manage in Disneyland, and found out about the GAC. It was a life saver!!. Not only did they give us all passes, we got front row seats on all the rides, events and shows as well as restaurants because my Mom was given a special senior Birthday pass along with her GAC that gave us priority. On top of the priority, when the staff saw the 2 cards, we were treated like royalty. We got a wheelchair brought to us for the duration of each day, we had a person assigned to check in with us via phone to make sure our every need was met. Everywhere we went we managed just fine and the trip was saved. Being front row and guided past the mobs with a friendly fully dressed staff member, when you don’t feel well was amazing and appreciated. It helpled us enjoy the trip. The extra service was very appreciated as we needed it. Not able to go on many rides,we enjoyed the shows, events and people watching. Lucky we stayed in a hotel by the entrance and my Mom was able to walk that distance each day. In the morning our guide would meet us, check our cards and give us fresh badges for the day. Off we went. Mom and I both held up to 8 hour days which was amazing. Without the chair, passes and special seating, I doubt we would hae stayed 2 hours a day in the park. I will always be grateful to Disney for that fabulous trip. We loved it so much we went back 6 months later with the same GAC and special treatment for my precious Mom. Yes we were exhausted at the end of the day, but we paced ourselves and stayed off the rides so it worked out. Mom is passed on now, 2 years after that last trip.What beauitful Disney memories we will always have. I appreciate that Disney recognizes those of us with chronic pain disabilities and helps seniors enjoy the park. Well done Disney.

  • MichelleLB

    Stephanie, thank you for writing this article. Yes I knew about the GAC that WDW (walt Disney World) has do to doing research before planning our family trip. We as a family have never been on vacation and are planning our first trip to WDW. I have CFS,Lupus , Fibro (you get the idea), my youngest has autism, and my middle child has asthma. So we will definetly be getting the GAC. I would like to know the name of the company Kdbarker used for the scooter because it would really come in handy. We are going to stay for 2 weeks (yes its’s crazy, but anything for my kids) I will gladdly go through what my body will do to me after just to have the fun memories with my kids (19, 16, 13) today. I am only 38 and know that one day I wont be able to do anything nor be here for them, but to make a memory of the fun and joy that we as a family will have will be worth it. (BTW, we are driving down from NC to WDW). So ty Stpeh

  • Lja

    sorry , i forgot, could u get on the buses and such, with the scooter, and was it okay to leave the scooter when u were on rides ?

  • Lja

    I would love to know what the company is that you get your scooter from, I last went to Disney years ago, and tried to do it on foot ! Not again , i do plan on going again in the future and would love to know where to set things up like a scooter. Thanks, Lisa

  • Kdbarker

    I always get the Guest Assistance Card and rent a motorized scooter because I’m not able to wheel the wheelchair myself. There’s a company I always rent from that will deliver and pick up your scooter to at your hotel. If you rent the scooter and wheelchair from Disney and park hop you must turn them in at each park and pick up another one at the next park. If there aren’t any available then you are stuck without one. I also rent the scooter that has the canopy on top to help keep the sun off of me. Hope this info helps.

  • Just wanted to add a little tidbit – I went to Disney World last October for 8 day and anticipated the same kind of happiest-hell-on-earth scenario. I rented a motorized scooter instead of a wheelchair and didn’t even get the guest assistance card, but was still able to pass by most lines and ended up having a great trip!

  • Susan Janet

    I have gone to the Disney theme parks several times in the past & always loved it there. I thought that I would not be able to go back again as I KNOW that I could not walk around the parks like I have done in the past or stand in those lines again. Thank you, thank you, thank you! for telling us about the GAC! I will certainly consider going there the next time my family suggests it as a place to vacation as long as I can get a GAC card. 🙂 I may wear my T-shirt “I may not look sick, but you don’t look dumb” for those rude people that give me the dirty look. 🙂
    Just curious, can you get one of those cards set up before I go and reserve an electric wheelchair ahead of time? If so, does anyone have the phone number?

  • I worked as a Tour Guide for 2 Companies In the Disneyland area and was the one usually assigned the “Special needs” runs Ironically because little did I know that I would one day be a special needs person.

    While escorting groups I found out that almost all tourist destinations and transports would with a little notice ahead of time would work to make accomidations or, direct you to a company that was equipped to meet your needs.

    When the ADA was written the Tour and over the road bus industry flooded Washington DC and bought all the Congress Critters that they could afford. When the ADA was passed there was an exception for those two industries big enough to drive a bus through! (pun intended) A scheduled route bus service (usually heavily subsidized by our tax dollars) must be 100% accessable but tour buses are held to a “”REASONABLE PERCENTAGE”” or have the phone number of someone who can trip lease an accessable vehicle.

    When traveling be frank about your needs when arranging your trip and call a week before you leave and verify that everyone knows and is prepared to meet your needs.

    Happy Trails

  • Steph

    I would just like to clarify, that this is a personal experience article. In no way, shape or form am I professing to know the ins and outs of the Disney Corporation. Everything I have written is the truth as it happened to ME and pertained to ME. I do understand that time of year is a major factor in the wait times with the Guest Assistance Card, which is why I stated that “This pass not only allows you to by-pass the lines, it allows up to 5 of your guests to follow right along with you. ” It DOES allow you to by-pass the “general” line. I did NOT wait for more than 10 minutes, but again…that is MY personal experience. I never said it got you to the front of the line immediately.

    I simply wrote this article to let Spoonies out there know that they don’t have to be afraid of Disney and what it would do to their bodies. There ARE alternatives to be researched.

    Just wanted to clear up some confusion. Thank you ALL for the awesome comments! I enjoy reading them immensely and appreciate each and every one of them!

    Love and Spoons,
    Steph 🙂

  • Jen

    Thank you so much for this information! I really wish I knew about this 2 years ago when my husband and my 3 kids went to Disney.

    I have Lupus/SLE and RA,and Raynauds, it was during Christmas time and I knew what I was in for, but like you my family was so psyched I had to pull myself together and pull one for the team.

    Well, we did go and as you could imagine it was super crowded and long lines, people pushing oh yeah the whole nine.

    I did burn myself out with the walking and standing in lines because I had no idea about the magic ticket!! Now that I know how wonderful, that changes my whole outlook on going. I swore I would never, ever go after my experience there. I was so horrible, I was so sick for months after that and my family felt so bad. It was not worth it. They will be so happy to hear about this!!! THANK YOU SO MUCH!!!

  • vbc2000

    Luckily someone told me about this card before we went to Disney World in November. We’ve been going to Disney since our honeymoon in 1996 and was very upset at the prospect of trying to navigate it this time since starting to have mobility issues and autonomic dysfunction.

    It was the first time I used a scooter or wheelchair in a public place and it was very hard to admit I needed it and it took a full day to get over what I thought people were thinking of me. You know what though? Not only did I get over it, it taught me something very valuable. It reminded me that all sorts of people, of every age, shape, size and color have things going on that we know nothing about. We don’t know what people’s struggles are. The scooter and wheelchair just made it very visable that someone had something going on. And like me, I knew these people wouldn’t be using them if they really didn’t need them – especially not to just get to a ride quicker. That first day, I would have done anything to just blend into the crowd again…but it wasn’t an option. The whole experience made me even more compassionate than I already was, and that’s a great gift 🙂

  • Angie_stl

    Steph, I can’t believe you left out the praying to the porcelain throne at the airport part, just to show how much extra devotion you have to those awesome kids. When I went to SeaWorld, before the super extreme pain I deal with now, I had just had ankle surgery, so I rented an electric scooter just like the stores have. I would have never made it otherwise. I still got looks while I was wearing my giant orthopedic boot.

    Katy- maybe you could explain all the different GACs that there are or leave a link so that everyone can understand them better. It would be helpful to anyone wanting to go rather than just saying that they aren’t a free pass.

  • choppie

    I can certainly relate to the dread of the “vacation”. I live in Sweden, and really need to go back to the U.S. to see my family. Especially since my sister’s husband of 40 years died this August. However, due to financial problems living on disability(or should I say existing…), and the dread of a 14 hour plane trip has kept me here. What amazes me is that you could do the rides! I would be in bed for a week if I attempted a kiddy ride. In any case, I am so happy that you found the guest assistance card and that your family had a great time. My kids are grown with kids of their own, and I hope that someday they get there. Since they were small, the oldest and I have been roller coaster freaks, and I agree with Amy, going on the top ten scariest roller coasters is something I would love to do, but never will. I am sure that as I drove up to the ticket window on my old lady scooter they would just laugh and tell me to go to the Grand Canyon…. And I even already use incontinence products!

  • Vicki

    I know of those looks, and comments. I don’t care! I know what my issues are and they don’t. I don’t let my disability keep me from doing what I want to do.

    I go to Disney once a year. In fact we will be going back in less than a month and the greatest spoon saver I have found, is not a wheelchair but a mobility scooter. If you don’t have one of your own to bring (or don’t want to) there are many places that will rent one to you. Some will even rent powerchairs if you are experienced with one.

    Don’t let your disability (or lack of children) stop you from a trip to Disney or anywhere else. There is a sort of magic that can at least temporarily heal all our wounds.

  • Annjette

    We did Disney, California several years back, with our special needs grandson in a wheelchair. (He has cri du shay, & it would’nt have been possible without the wheel chair. The people there were terrific. At the end of the day, Grandma & the grandson who was wheeled all over that happy land, sat on the curb to watch the parade, while the rest of the family fell asleep on a park bench.

    Grandson & I were the two with mobility issues, in a family group of six people. The fact Disney California was user friendly for those of us who struggle with pain/mobility issues, or whatever, made the trip great. If people stared we didn’t notice. One way i handle this mobility thing is by telling myself: “What other people think is none of my business.”

    After 70 years of dealing with the “…you don’t look like you have ————…”, startements & misunderstanding & stares I’ve developed this belief: everyone has limitations & the only “…handicap…” is one people can get over (the handicap of having a stinky attitude.)

    It’s challenging not to respond to looks of “…oh poor you…” or the scowls of those who can’t see my limitations at first glance (at least not every day.) Using the “…handicapped stall…” in the bathroom: means I can get back up from the commode. Using my “…handicapped parking…” sticker means I can use my spoons for shopping, (not for simply getting across the parking lot).

    Knowing others do understand (espeically on this web site) really helps. I don’t have lupus but I do have a mosaid of issues. Perhaps that is what eventually led me to working in Special Education. I understand.

  • Nicole_Danielle

    Steph, thank-you so mauch for this. After an amazing but not-without-consequences trip to Ireland this last summer (as a result of the high-stress, low-sleep schedule and nasty, nasty Celtic Sinus Infection I aquired, my RA became active for the long-term, and has further damaged my joints), I am nervous about a trip my mom wants to plan to Disney in Flordia this coming summer. However, because of your article and the wonderfully supportive and insightful comments made (Thanks Be for Our Fellow Spoonies), I feel a little more confident. I will be looking into this option when the time comes. Thank-you, thank-you, thank-you! God bless and keep you in His loving arms.

  • Stephanie

    Parents of kids with autism and similar conditions, take note: This card/pass can also be a trip-saver for families who have a child with autism.

  • Father Daniel Beegan

    Having no children or grandchildren, it’s unlikely I’ll ever go to a theme park, but I agree, Steph, with all who praised your article.

    I was unaware of the Guest Assistance Card, for example, which I will now recommend to disabled folks planning a trip to the Magic Kingdom.

  • Amy

    Lady, this whole thing had me in stitches, alternating with sympathy tears. You have such a gift for writing! You make the spoonie journey funny in the midst of it being humiliating, aggravating, etc., & you don’t pull any punches. You’re great!
    Katy, thanks for the additional info.
    Nope, I don’t intend to go there. Our son’s 21, long past having much interest, & we’re roller coaster freaks anyway-Cedar Point looks far more interesting since it has coasters so extreme you make out your will before you get on one, & could conceivably consider going there for euthanasia purposes. Mouse ears can’t compete with a coaster that goes around 90 mph & has screeching corners & requires the use of adult incontinence products, sorry! 😉 I’d give anything to have the health & wealth to hit every extreme coaster in the US & even overseas…barring a miracle, not gonna happen, since most parks ban anyone in my shape & at my age & size from going on coasters (I’m the queen of adipose-endowed, metabolism-deficient womanhood-fumes from fast food joints add a few ounces if I inhale too deeply)

  • Valerie Welch


    Being a Disney lover having grown up in Florida and going all the time, I can appreciate your hesitations considering all of your pain. And as a mother of three soon to be four..I too can appreciate your want to never let down your family. As always I am humbled by your brave unwavering love of life no matter the pain you endure. You are as I say again and again an amazing woman! I hope you have a Merry Christmas, I know you will have a festive New Year!

  • Ivy

    Great Article Steph! Love that your vacation turned out so happily full of great memories. Your kids are going to cherish them, just like i’m sure you already do.

  • Ivy

    Great Article Steph! Love that your vacation turned out so happily full of great memories. Your kids are going to cherish them, just like i’m sure you already do.

  • Teri Kennedy

    Excellent article!!!! We just canceled our Disney portion of our vacation for many of the reasons/challenges you listed. NOTE: I do not have any small children. If I did, I too would have grinned and beared the discomfort, pain, and fatigue. I applaud you also doing this on a loaded dose of prednisone! Wow – been there done that, thankfully many,many years ago. It can be both helpful and vicious!
    Screw what others think, sneer, moccasins, they have no idea.
    Very, very, well written! It is so nice to be understood.

  • Corie

    Good job Steph! Had many laughs as this reminded me of our most recent trip to Disney last fall! About a week or so before the trip, I was at my doc’s office in tears because I didn’t know how I would make it through due to fibro, arthritis, and what I now know to be peripheral neuropathy. (And I didn’t know about the GAC). And we were going there for my son’s birthday. …the joke of it all (yes, thankfully I can look back and laugh) was that my three year old daughter and I both ended up with H1N1 the first day at Disney! Yes, we drugged up and pushed through it… and have quite the story to tell. One of my friends said about our week, “Sure doesn’t sound like the happiest place on earth!” Yet I want to do it again… someday.

  • Stephanie, what a great article. By the end of the first paragraph I knewnyou had written it due to your ever humerous candor! Thank you for this, I’m glad your trip turned out better than expected!

  • Melissa

    I have used the Guest Assistance pass for my son who is on the autism spectrum. In addition to my own problems he has sensory issues and if would never ride anything at DisneyWorld if we had to wait in a hour or two line. As my own issues have increased I use the GAC more for me than him, but it seemed easier to say my son has autism than to feel the glare of you don’t look sick. I figure it balances out as we never spent more than about 4 hours in a park each day. That is about the amount of time he’s had enough of being in crowds without loosing his cool. At the time I lived in Georgia and bought the annual pass so we could come back several times that year, but not have that feeling of we have to do everything in one shot.

    There are people in my family who think it is wrong for me and my son to get this “special” priviledge, but it is the difference between being able to enjoy a few things at the park and nothing since my son would even at 15 loose it after someone bumped into him one too many times.

    I’m glad you were able to find out about this before your trip as for many people it is the only way to enjoy the magic of Disney.. I am grateful for the memories it allowed me to create with my son. Now that Disney uses the fast pass it does allow us to blend a bit more as I have gotten good at keeping the GAC in the bag until it was time to show it to a cast member….as far as anyone knew we had a fast pass ticket. There are some attractions which don’t have fast pass, but showing the GAC to whoever was working the attraction always directed us quietly to the handicap entrance. Occassionally we get a glare, which is quite frustrating when my body is hurting, but for the most part I became quite good at blending into the fast pass lines.

    Buzz Lightyear was/is one of my son’s favorite characters too… glad your child was able to have that moment 🙂

  • Kat

    Disney is amazing for all that stuff. Going to Disney for my first (and first airplane ride) in March was a wonderful experience. I was not diagnosed with Psoriatic Arthritis at the time, nor was I really having many symptoms prior to Disney.

    I did have a lot of pain in my shoulder/neck from a previous injury. For like $30 a night, you can actually rent a recliner from a hospital place that will deliver it to your room (free delivery) and pick it up afterwards. I got this because I knew I couldn’t live in a room with just a bed and upright chair. Disney was so accommodating…they even gave me the name of places to use. You can also easily request in house extra pillows and stuff.

    I had my first really symptoms appear while in Disney. The first night there about 5:30 I felt like someone ran over me. It came about out of nowhere…headache, severe physical tiredness, inability to even think. I figured it was from the stress of flying (First time flying and we had bad weather, etc). I had just eaten dinner. We had not even hit any of the parks and our room was really close to the lobby. I went back to the room, took a shower, curled up in my recliner, went to bed and got up the next morning and was my usual self.

    Next day I went to Magic Kingdom. The exact same thing happened to me that night and I had even went back to the room mid-afternoon and took a nap. My teenage god-daughter who I took with me said that I looked like “death” (she is a little dramatic). I felt like it too. I hurt all over, and just felt like I couldn’t move. I was actually at the point of thinking I may not make it back to the room from Downtown Disney. I had to literally pace myself…just focus on getting back on the boat. Then focus on the boat ride…etc and each step was just horrible. To this day, I have no idea how I did it.

    Keep in mind that at this point, I had no clue what was happening to me. I now recognize it as an activity induced fatigue type of thing, but back then I had no idea.

    The next morning I had had enough. I was scared out of my mind across the country from my home as the “adult” with my teenage god-daughter (who thankfully is so sweet and caring and responsible). They place I got the recliner from had left a pamphlet talking about scooter rentals. So I called up and got one. I think that ran about $25 a day. It was a lifesaver.

    With a scooter I am able to exert way less energy since I don’t have to walk. You get to load the buses/transportation first. Several of the rides have express handicapped entrances. And of course I, as a 28 year old riding a scooter got all the dirty looks. They have reserved areas for watching parades, etc.

    I could even hear people saying, “Gosh..I should have gotten a scooter. Then I could do this or that” That bothered me so much because they didn’t realize that it took every bit of pride I had to rent that scooter to enjoy my vacation.

    When I got home from Disney I slept the better part of the next several days and even after that it took me weeks to recover. Then 2 months later I had my full fledged flare up where I woke up and couldn’t walk. After that, and getting diagnosed it all fit together and I realized what had happened to me in Disney.

    I am going back to Disney in March. I have already reserved a scooter…a deluxe one that is running me $40 a day. It’s supposed to have a really comfy seat like a luxury car. It will be waiting for me at my resort and I have it booked for my whole trip.

    I also called Disney when I reserved my room and spoke with special needs department ( I love that they call it special needs rather than handicapped.). They have such a variety of room there available for all needs. They have true handicapped room which have the extra room for a wheelchair, roll in shower, etc, but they also have handicapped rooms that have the high toilet (which I need) and a walk-in shower (rather than a tub that I have to get my leg over).

    Anything special things you need for a trip…extra pillows, a recliner to sleep in, etc…make it known to Disney when you book. They are so wonderful and have the names of places that can help.

    I have a cousin who has Fibro and she collapsed in Disney once in one of the parks. Not only did they paramedic team come and get her, but they gave her 4 year old little boy a stuffed elephant to help make him feel better (of course he was upset watching that happen to his mother). She said they truly were amazing. There are also doctors and dentists that make in-room visits if you need them, and grocery stores that deliver to the resort. They really do truly have a good solution for just about any problem that you may encounter.


    I too was dreading our much anticipated trip to disneyworld in october, for the same reasons. Although I don’t have lupus, I have 2 other neurological diseases, one requiring brain surgery. I have a very hard time walking in a store let alone the thought of disneyworld! A good friend of mine told me about the GAC’s!!! IT WAS MY LIFE SAVER!! I could not have done 7 days at DW without it.

    I love how you call it the golden ticket! 🙂

    Great newsletter!

  • I had to do Disneyland in a wheelchair once after surgery. I found that having a walking cast on helped people believe that I wasn’t faking a disability, and that the staff were remarkably helpful.

  • Katy

    Just so all the readers know, a Guest Assistance Card does NOT allow everyone to by-pass the lines. At crowded times of year, it will actually take longer sometimes to use the GAC. There are MANY different stamps you can get on the GAC and they all do different things.

    In fact, it even says on the card it is not designed to by pass lines. I am not saying you are wrong, just that not everyone should expect the same experience.

    I am a moderator of the disABILITIES forum on the largest Disney Resort planning site online. So I know a fair amount. I do Disneyland about twice a week, and I use a wheelchair and a GAC.

  • CarlyRM

    Great job Steph!

    Just to add, the “cast members” at Disney are not supposed to ask what illness or disability you have, just what sort of assistance or accommodation you need. Of course you are always able to volunteer as much information as you’re comfortable with! This also works at Disneyland, which is how I discovered it, after obsessive levels of vacation planning!

  • BEAUTIFUL, homerun my sweet friend. Your insights and brutal truths are a bright spot in a cynical self absorbed world. I am so grateful for your transparency and self deprecating honesty is uncommon, and I am so grateful for it. I am constantly checking for each new article, and so looking forward to your future snarkie gems. You are a treasure

  • Teri Schultz


    How can you make me laugh and cry at the same time??? You inspire me to work my butt off for the September Lupus walk in our town!