For Everything There is a Season

"In order to write about life, first you must live it." ~ Ernest Hemingway

Page 18 of 44

Disney Honeymoon Part Two: Getting Myself Around Disney World

I wasn’t sure exactly how I was going to do this whole Disney blog series. I originally was going to write about it park by park and I still may do that, but today, I want to go with what I think is most important and that is how I, Christine, a person with Sjögren’s syndrome, and a lot of complications that come along with that, managed to get around Disney for eight days.

If you would like to read my first Disney Honeymoon entry, you can find it here: Disney Honeymoon Part One: Animal Kingdom Lodge.

Previously, I also wrote a blog entry, before going to Disney, that you can read here: To Scoot Or Not To Scoot, That Is The Question. It is the precursor to this blog entry about how I struggled with the decision about whether or not to rent a scooter for our trip.

As all of you know who have been to Disney know, they have a bus transportation system that runs throughout the Disney property. We did stay at a Disney property called Animal Kingdom Lodge (AKL). I did quite a bit of research before we left to try and get an idea of how the bus system worked. I read a lot of commentaries, both positive and negative about the bus transportation system. Some people thought it was great, but a lot of people complained about it. There were complaints about the time it takes to travel from place to place, how long it takes for a bus to arrive, and disabled people taking up too much bus space. Yes, you would not believe how many people complained about that. See, each Disney bus has three available handicap spots for wheelchairs and scooters. When one is loaded on the bus, the regular seats get folded up and this results in less seats for walking people. People stated in the complaints that this meant that sometimes, they had to wait for another bus.

Now, my husband and I went during low season (end of September) so I only have one basis for comparison. However, I never saw anyone have to wait for another bus because the one they were waiting for was too full. I’m sure it happens, but it didn’t to us. There are seats as well as rails to hang onto for people to stand. You can fit a lot of people in those buses. Regardless, I will say this: in a heartbeat and without a shadow of a doubt, I would prefer to NOT have this autoimmune illness and subsequent joint, temperature regulation, and fatigue issues and instead wait for a second bus to arrive. So I am sorry if the people who are able to do Disney on foot for a week feel put out. Actually, I am not sorry. I am just being sarcastic because this issue really fires me up.

Overall, I think the Disney bus system is a great way to get around. Yes, it does have its flaws. I found this most noticeable flaw to be trying to get from hotel to hotel. When my husband and I realized how long it would take to get to The Polynesian from AKL for dinner on our first night, we got a cab. It would have been about an hour and since we were traveling all day and exhausted, we thought it was money well spent. It ended up being cheaper than we thought because AKL comped us the ride to The Polynesian, which was about $22.

For us, the other bus issue was how far our hotel was from everything else. We could get to Animal Kingdom in five minutes, but on a Friday evening, it took us over an hour to get to Raglan Road at Downtown Disney and we could have lost our reservation for dinner because we were late. Luckily, we did not and from then on, we made sure to give ourselves more travel time. Honestly, the travel time from AKL did not bother me, except for the Raglan Road incident, and it definitely would not deter me from staying at AKL again.

The bus stops are right outside the hotel. For us, it was a minute walk from the hotel front door to the bus stop and about a five minute walk from our hotel room, as we were fortunate enough to have a room closer to the lobby. This is very important if you have a disability as some of these rooms are VERY far away from where you go to catch the buses. Try and put in a special request when you make a reservation. The bus stops are clearly marked with where to go for each destination. The buses run right from the hotel directly to the park and back with the exception of the water parks and Downtown Disney. There are stops in between for those destinations. I don’t think we ever waited more than ten minutes for a bus to arrive to pick us up anywhere, except for maybe one or two times when we waited twenty minutes. All the bus stops I was at were shaded and had benches; both of which were a big deal for dealing with my autoimmune issues.

What you have to remember when dealing with Disney bus transportation is this: YOU ARE ON VACATION! Give yourself plenty of time to get somewhere, especially if you have reservations. Relax. Besides Downtown Disney and the water parks, the longest time it took us to get to a park or back was twenty minutes to Magic Kingdom. My husband and I used the time to talk about what we wanted to do that day at the park or on the way back to the hotel, we would do a review of our day. I would also plan things from my iPhone, including making reservations. Or, we would just chat it up with other guests on the bus!

As I mentioned in my above blog entry, I did rent a scooter for the eight days we were at Disney. I have one thing to say about that:

BEST DECISION EVER!!

I rented the scooter from a company called Walker Mobility in Orlando. Despite the fact that they are not an officially approved Disney scooter company, I would never use anyone else. The only difference is that you have to meet them when they drop off and pick up the scooter; rather than leaving it at bell services. It’s worth it. They came highly recommended and I cannot say enough good things about this company. I also found they had the best prices. I paid $125 to rent the scooter for seven days. I rented a three-wheeled Go-Go Elite Traveller Plus scooter. I absolutely loved it because I had no experience with scooters and it was easy to navigate and it took sharp corners very easily. Other Disney guests commented on how well I navigated some of the lines for rides with sharp and frequent turns. It does have a weight limit of 190 lbs which luckily, I am under these days so I would highly suggest this scooter. The basket is a little smaller than the other scooters, but I am a big fan of traveling light at Disney so it really was not an issue.

I learned that there are some things which are important to have when renting a scooter at Disney. I always had a hotel hand towel on the leather seat to keep from burning my legs and I kept a trash bag in the basket to cover the scooter when it looked like it would rain. Sunblock is essential for your the top of your hands and a coil key ring for my wrist held the scooter key, kept it secured, and made the key easily accessible. I also always made sure I charged the scooter in our hotel room every night. The battery lasted me thirteen hours in Epcot one day without recharging.

Out of the eight days we were there, two were travel days and I used the scooter a total of two and a half days: one full thirteen hour day in Epcot, a half day at Downtown Disney, and a day at Hollywood Studios. Every other time, I walked. There were times where I pushed myself, but being with my husband and doing Disney on foot IS different than doing it in a scooter, so I wanted to do as much as I possibly could on foot. That being said, the time I did spend on the scooter saved me and made the trip possible. The day at Epcot would have been half as long, if it even happened at all. I was exhausted and in some pain from walking Animal Kingdom the day before.The sun and heat were tough that day and not having to use energy walking made the sun/heat much more tolerable for me.

During the days I did use the scooter, most of the time I would park it and walk around a small area, such as at World Showcase in Epcot. Other times, I would park it right outside an attraction and walk into line. Finally, there were times where I was hurting or so tired that I would drive the scooter right up to where I boarded a ride or attraction. The cast members are very helpful on letting you know how to proceed once you get to an attraction so I am going to say one thing and this is important:

DO NOT WORRY ABOUT USING YOUR SCOOTER AT DISNEY!!

I stressed out about this before the trip and it was not worth it. There are plenty of spots to park it, usually where the stroller parking is and like I said, cast members will direct you for everything else. Yes, Disney makes it that easy!

I had also stressed out about using a scooter on the buses. Again, a lot of worry over nothing. I will advise that if you have never used a scooter, go to a grocery story, Target, Walmart, etc. and practice on one of theirs before your trip. I practiced parallel parking at a store and that was invaluable as you have to parallel park your scooter on the Disney buses. If you are able to, some drivers will ask you to get up, sit in a regular seat, and they will do it for you. Regardless, you sit in a regular bus seat after you park the scooter anyways….if you are able to. I think there was only one time that I had some difficulty with the scooter and the bus, but I just took my time and it all worked out. I ignored the people impatiently waiting to get on the bus and did my thing. Scooters and wheelchairs board first and get off last. This was another reason I loved the Go-Go Elite scooter; it was much easier to get in and out of the small bus spaces. After one or two times getting on/off the bus, you will be fine.

One other issue to be aware of when using a scooter in Disney is other people. I am proud to say that even as a new scooter user, I never once ran into a person. But, you have to be careful. You can be the best scooter drive in the world, but people DO NOT pay attention to where they are going. I thought the bigger issue would be little kids but it was actually the adults I almost mowed down a few times. A lot of people have no problem cutting in front of you or ignoring you. Some people are just distracted by the awesomeness that is Disney.

There is a lot written online about people who use scooters at Disney and how they crash into people, don’t watch where they are going, etc. I have to tell you that I did not find that to be my experience. On the days that I walked, my issue was people not paying attention when they were pushing their strollers. Have you seen the size of strollers nowadays?!? Some of them were the same size or bigger than my little scooter. I am not even joking. I found adults to be more reckless with the strollers than the scooters….by a long shot. And several times I was hit by a stroller while walking and when you have joint issues, that is not fun. But, I brushed it off and continued to enjoy my amazing vacation.

That’s my story on the whole Disney experience via bus, scooter, foot, and taxi. I hope it was helpful. I am sure there are things I left out so please feel free to comment below or contact me with any questions.

The Impact of Tales From the Dry Side

I got a very exciting e-mail this week from my publisher. It was notification that my galley proofs for Tales From the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjögren’s Syndrome were ready for my review. This is a big step in the publishing process for me. Galley proofs are basically the actual book digitally presented for me to review; the cover, the interior, all of it.

It’s a scary process editing these galley proofs because if there are any mistakes, the full responsibility is mine. I have to say, as a perfectionist, that is much more responsibility than I want. On the other hand, one of the things I have enjoyed so much about the self-publishing process has been the opportunity to create a book that is completely and uniquely mine. With that, comes great responsibility. However, I can only do my best and in my heart, I know I have given this process everything I have. The final product, with any imperfections, will be enough. Just as I have been enough.

My goal during this entire publishing process has been to have this book, my very first book, available to customers in time for Christmas. Of course I only have so much control over that, but yesterday was my opportunity to speed up that process. So in between having some work done on my car, doing a hospice volunteer visit, taking care of a sick dog, and choir rehearsal, I worked fervently on reviewing the galley proofs. And this means rereading and editing the entire manuscript…for like the zillionth time. That may be an exaggeration, but I have read this thing more times than I can count. And last night, at 8:30pm when I was exhausted, cranky, and ready to throw my computer out the window because I would rather be concentrating on watching Grey’s Anatomy, I realized just how sick and tired I was of this whole book writing/publishing thing.

That was, until I got to Laura Jeanne’s chapter….again.

It is still surprising to me that every single time I have to review this manuscript, some part of one of my contributor’s stories moves me to tears.

Last night was no exception.

Laura Jeanne’s story is an amazing testament to the strength of the human spirit. This woman, like many of us, has gone through such hell in her Sjögren’s journey. Yet, her faith in God remains steadfast and certain. She still wakes up every morning putting one foot in front of the other. She counts her blessings and while several times has become close to just giving up on life entirely, she finds some hope and continues on her journey.

Rereading Laura Jeanne’s story last night reminded me of why, for two plus years, I have continued with pursuing this dream of mine to publish a book of personal Sjögren’s stories: to inspire, bring hope, and remind people to put one foot in front of the other. To remind them that it is possible to survive, and sometimes even to thrive.

Thank you Laura Jeanne, and thank you too all of my amazing story contributors. We are just one more step away from actual publication and one more step away from bringing these stories out into the world. There is no doubt in my mind that these stories will help countless Sjögren’s patients. These stories will make a difference. They will educate and bring awareness to the medical community. They will bring hope and comfort to the four million people diagnosed with Sjögren’s syndrome.

The Tales From the Dry Side stories will….

Encourage.
Inspire.
Change the world in a small way.

Thank you.

Yoga and My Body

This past April or May, I started taking a gentle yoga class at my gym. I have been pretty consistent with attending the class, with the exception of a period of time this past summer when I was not feeling well and at the doctor all the time. It is a gentle yoga class with a wonderful instructor, who has gone out of her way to show me modifications to help accommodate the joint issues with my wrists and knees.

Since I started the classes, I have seen some dramatic improvements in my flexibility, strength, and balance. As some of you may remember, I dealt with a bout of Guillain-Barre in February 2012 which required me to go through months of physical therapy to regain full functioning of my legs. However, I continued to struggle with mild balance issues at times. Since starting yoga, my balance issues have all completely resolved. I probably have better balance now then I did pre-Guillain-Barre.

I have noticed in my last several classes how far I have come in the class in terms of being able to do and hold the various postures. Two in particular have always challenged me and this week, I have been able to do both of them with a lot of effort, but no pain.

Something very unique happened to me today though in class. Yoga is a very get-in-tune with your body type of exercise. At the end of class, we get into a position called Shavasana or in layman’s terms, the “corpse pose.” I know, I know. Makes you want to run right out and sign up for yoga. It is actually a very important part of the class. It is the chance for the body to regroup and reset itself. It is almost like a deep, meditative state and is especially important for someone like me, who frequently has a hard time quieting her mind.

So after what I thought to be a very successful yoga class for me, I got into Shavasana and I began to have all these thoughts running through my head. Emotions flooded me. It reminded me of the few times when I went to acupuncture and I would start spontaneously crying for no reason. The thoughts that flooded my mind today had to do with my body and how much I have started to come to terms with it, flaws and all.

Until recently, I have always been at war with my body for one reason or another. I didn’t like the way I looked: my hair was too curly, I had too much body hair, I was fat, the list went on and on. I had cancer in my mid-twenties which of course wreaks havoc on your body and self-esteem. Then came the autoimmune issues. They have caused me to be at war with my body more than any other thing that has ever happened to me. I have been working hard over the past few years on changing the way I look at myself and more importantly, the way I talk to myself. But there is something about yoga that has accelerated that process for me. Yoga allows me to see what my body is capable of, rather than how it has betrayed me.

While in Shavasana this morning, all I could think about is all the amazing things my body has done for me. Yes, I know I was supposed to be meditating and keeping my mind clear, but I figured this was all therapeutic for me, so I let myself experience it. My body has endured so much. In periods of my life, I have dumped a ridiculous amount of toxic food and drink into it, while avoiding any type of exercise. My body has endured up to fourteen hour shifts as a nurse; most of it on my feet. I have deprived it of sleep. It has undergone long and arduous tests and treatments; everything from months of radiation to bronchoscopies to surgeries. It has survived the invasiveness of it all. My body has endured toxic medications. It has enabled me to show love and affection. It has allowed me to go on adventures and experience a small part of this world. It has served me well when I have been of service to other people. This body has feed the hungry and held the hands of the suffering. It has made a difference in the life of others.

Lying still on that hard floor this morning, I became acutely aware of how amazing my body is. It is stronger today than it was yesterday. It is stronger this year than it was last year. This has not happened by chance; it has happened because I take better care of it; much better care.

As all these thoughts were going through my head this morning while lying with my eyes closed and I began to cry. It wasn’t a sobbing type of cry, but more of a silent tear down the cheek type of cry; the kind where you try to stop it, but the tears keep coming. Of course as this was happening, I immediately thought about the fact that I was in a room with about twenty other people and they might see me all teary and think I was a nut. But then I realized it didn’t matter. It was my yoga experience. My time to be aware of and rejoice in my body.

So thank you yoga.
And of course, thank you body.
Thank you for serving me well.

Running, Sjögren’s, Races, and Disney

As a child and teenager growing up, I was not the athletic type. One of my worse memories as a freshman in high school was having to run a hundred yard dash in gym class. And then a relay. A relay involves team members and after the hundred yard dash, I was known to be the slowest runner. Of course you know what that meant. I was the last person picked for my relay team. I was embarrassed and humiliated; which was a common occurrence for me in gym class, except for when I was playing volleyball. I was, and still am, decent at playing volleyball.

Over the past several years, I have been working on my fitness level. I have lost about sixty-five pounds and I am probably in the best cardiovascular shape of my life. My joints are often a mess but my heart does just fine. I pale in comparison to many other people who can spend hours at the gym, but I know I am doing the best I can with this lousy autoimmune illness, so I try not to compare myself to others; just to myself.

About two years ago, I decided I wanted to be a runner. My Sjögren’s related joint pain had quieted down, thanks to hefty doses of prednisone, and for some reason, I thought running would be a good idea. However I only lasted several weeks before my knees started to act up in a big way and I was afraid that I was doing more harm than good. To be honest, I also didn’t know what I was doing in terms of stretching, cooling down, and all those other important things that have to do with running. I had also started to wean down on my prednisone to a point where I came off it completely. Not only did that affect my knees, but most of my upper joints as well. At that point, I decided that as a person with an autoimmune illness, I would never be able to run again.

Things have changed since then. I have started several different alternative medicine treatments, which have enabled me to tolerate the lower doses of prednisone much better. I am carrying less weight and my fitness level has improved. So I have made two very big decisions:

I am going to run again. Or at least, I am going to try very hard to run again.

That was the first decision. I came home from my honeymoon in Disney and decided that I was going to try running again. The reasons are varied. To me, running represents pushing my body beyond its limits. And trust me, my body has a LOT of limitations, and I am tired of them. I want to be stronger and I want that endorphin rush that comes from running and from pushing my body to the limit. I want to do something that to me, and to most Sjögren’s patients, seems like the impossible. Over the past two years, I have done quite a few things that at one time, seemed impossible for me to do. The biggest example is that I am in the process of publishing my first book. Another example is the $7000+ dollars I raised in the period of one month to publish said book.

I am doing the running thing quite a bit differently this time around. I am doing my homework by researching training techniques, especially in relation to injury prevention. Thanks to yoga and Pilates, my hips and back should make it through the runs. My bigger concern is my ankle and knee joints. I have an old ankle injury from a fall in 2012 that so far, seems to be holding up pretty well thanks to yoga. Before I started taking yoga classes, I was looking at the possibility of an ankle surgery, but that is no longer an issue. After five runs, I am already starting to feel it in my inner knees, however I am not sure if this discomfort is joint related or muscle related as the pain is different than my typical knee joint pain. My body could just not be used to running. However, I have incorporated some pre and post-run stretches into my routine, as well as icing my knees after each run. This helped quite a bit after today’s run. I have also learned that I need to do better with my nutrition and on strengthening my core. Luckily, I love Pilates. I feel that Pilates and yoga will go a long way in helping me with not only my autoimmune symptoms, but with my running as well.

When I tried running two years ago, I found this awesome running store in a town about forty-five minutes away and got properly fitted for running shoes. Even though I stopped running at that time, I found that running sneakers were the best sneaker for me because I overpronate when I walk. Before we went to Disney, I went back there to be fitted for another pair of sneakers. Earlier this year, I developed plantar fasciitis and was referred to an orthotics specialist who fitted me for orthotic inserts that go in my sneakers. I think that those have been a big help with running.

So I am taking it slow, very slow. I have friends who are helping me out by providing me with knee strengthening exercises (thanks Heather!) and I continue to research and learn as much as possible. And I do not run. I do a run/walk with my goal of doing a mile in fifteen minutes three times a week. That’s it. When I can do that for several weeks, I will consider upping the distance and/or the time. I think last time I attempted running, I tried to do too much, too soon. I will be smarter this time.

I am well aware that this running thing could not work out, which is why even though I have been mentioning on my personal Facebook page that I have started to run, I haven’t been as vocal about some other plans that I have. The reason is simple: I am afraid that if I say anything publicly and then fail at running, I will look like a failure. Then I realized that just the fact that I am TRYING to run again makes me a success. The fact that I am willing to go outside of my comfort zone makes me a success. But there is something I want to do more than anything:

I want to run a race.
Specifically a half marathon at Disney World in January 2015 for Team Sjögren’s.

After spending a week at Disney and then hearing about my friend, Heidi, who has Sjögren’s, training for her first Disney marathon to take place this January, I decided that I want that experience as my goal. A goal so seemingly insurmountable that it is almost laughable to me. But I want it and I want it bad. Part of it is probably because I like the challenge of trying to accomplish something that I was told I could not do. I know that there is a strong likelihood that if and when I do a race, I will finish dead last. I am O.K. with that. I just want to finish.

So I have made some other running goals. Five months from now is the Holyoke Road Race. It’s a pretty big deal in the area where I live and it is the day before the big St. Patrick’s Day Parade in Holyoke, MA. I have always wanted to be a part of it but never thought it was possible. It is a 10K race which means that the course is six miles.

Six miles.
Good Lord.

Then again, a half marathon is 13.1 miles so I better start somewhere. There is also a race Memorial Day weekend which I would LOVE to do. It is called the Run To Remember race in Boston and its goal is to honor fallen Massachusetts law enforcement officers. There is a five mile course and it runs through downtown Boston, one of my favorite places in the world. I think that if I can get through both of these races, including the training, I will be able to make a more firm decision about booking tickets for Disney in January 2015. At least that is the plan my husband and I have come up with so far!

There. I have said it. I am going to run and try to do a race…or several races. I will stay positive, be gentle with myself and my efforts, and try to remember that this will take time and a lot of patience. I am also VERY receptive to any suggestions and advice that any of my readers have for me. Please fell free to leave them in the comments section below.

Kickstarter Contributors: Tales From the Dry Side

As many of you may remember, I did a Kickstarter funding campaign this past summer in order to raise money to self-publish my first book, Tales From the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjögren’s Syndrome. The campaign was an astounding success and I exceeded my fundraising goal of $7000 by raising $7305.

The campaign was based on a rewards program, which provided an incentive based on the dollar amount donated. One of the incentives was that the contributor’s name would appear in a special blog entry on Thoughts and Ramblings. This is it!

I feel like I don’t have adequate words to describe the gratitude I feel towards my Kickstarter contributors. All of them believed enough in this project, and in me, to donate their hard earned money towards my dream of publishing a book that talks about what it is like to live with this challenging illness. Sometimes I lie awake at night, right before I drift off to sleep, thinking about how many people this book will help.

Tales From the Dry Side is currently in the process of being published. The interior has been designed, I have approved the final copy of the front and back covers (it looks incredible!), and the final draft of the manuscript has been edited and reviewed. I am anticipating that the final product will be available before Christmas and hopefully, even by Thanksgiving.

So without further ado, and with humble thanks, the following people donated $100 or more to the Kickstarter campaign:

Lucy Bender
William Bowers and Alisande Watterson
Nancy Crabbe
Michael and Lauren Donati
Trish Duffy and Ed Jazab
Tina Forrister
Annika Johansson
Paul and Beth Kheboian
Martha LaCroix
Joe Leonczyk
Carla Meredith
Dennis and Jeanne Molloy
Dennis Molloy, Jr.
Paul and Jean Rouillard
Dr. John Savoia, D.D.S.
Heidi Syndergaard
Jeffry and Jackie Traw
Gladys Vargas
Drew Wendelken
Steven and Karen Wilmes
Suzanne Boisvert-Wood
Carol Wood
Jessica L. Zaydak

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