For Everything There is a Season

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

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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

Disney Honeymoon Part One: Animal Kingdom Lodge

Exactly one week since we have returned from our honeymoon at Disney World and I am finally getting some time to start my blog series about the trip. I am not sure yet how many parts there will be, but I am guessing at least six or seven separate entries. Some of the writing will be informative and some of it will describing my own personal experiences; especially in relation to how I managed my illness while traveling.

Today I will be focusing on the hotel we stayed at: Animal Kingdom Lodge. My husband took his kids to Disney years and years ago and stayed at one of the value resorts. I went with college friends about twenty years ago and stayed at a Red Roof Inn somewhere in Orlando. Because this was our honeymoon, we wanted to stay somewhere special and it was very easy for us to decide that we both wanted to stay at Animal Kingdom Lodge (AKL).

During a very scary emergency room visit in February 2012, I asked my then fiancé to talk about something good to distract me from the fact that a doctor had just told me I possibly had a blood clot in my lung (pulmonary embolism) and would need to be admitted. My fiancé began to talk about our honeymoon and how we would stay at AKL with a savanna view so that we could wake up to the animals every day. I argued that it was too expensive but he insisted that it was a special time and not to worry about it. I still joke about how blood clots in my lungs (because yes, I did have them) helped me wrangle a savanna view! Although anyone who knows my husband knows better than that, because he is incredibly generous every day and not just on special occasions.

From the moment we checked in on September 24th, I was blown away by this place. I had read a ton of reviews online and although a lot of them were positive, a lot of people complained about a few particular things, such as how far AKL is from most of the Disney parks. Let me tell you, when I walked into that majestic lobby with all of its beautifully crafted wood, the last thing I cared about was time spent on the bus! Even the front desk looked majestic. And the smell, oh don’t get me started on the smell. Every time we walked through those doors, the aroma of wood and I don’t know what else would assault my senses.

Animal Kingdom Lodge lobby
 

We arrived around 12:30 and our room was not ready because they were going to put us into a room with two queen beds and we decided to wait the extra few hours so that we may get a room with a king bed instead. I guess this is the point where I should tell the whole story about the issues we had the first twenty-four hours with our room.

We got into our room about 3:30pm, unpacked, and immediately left for our 5:15 dinner reservation at The Polynesian. I had medications and food that needed to be refrigerated and put them in there as soon as we got into the room. We left and were gone for about five hours only to come home, grab a drink, and realize it was warm. The fridge wasn’t working. The other major issue was that from the second I walked into the room, I noticed how much it smelled like mold/mildew. It was overwhelming. We figured maybe the room just needed to be aired out and we had left the balcony door open to accomplish this. When we returned from dinner, I called the front desk about the fridge. I was a bit upset although I think I handled it pretty well. I was exhausted from traveling all day and I didn’t know if my injectable medicine or liquid medicine had been affected at all. The food I decided was not worth the risk and we never ate it. They came up to our room at 10pm with a brand new refrigerator and that was that.

The next morning I woke up and my breathing was a little tight, which it has not been in quite some times. I have severe mold allergies and asthma and I was concerned that it was the room. My guess is that the smell had something to do with the fridge not working as that is where the smell was the worse. Plus, it was just disgusting. For $400/night, our room should not smell. Actually, most of that hallway smelled. We spoke with the front desk and they said they would assign us a new room. That proceeded to take all day. We had agreed to a handicap accessible room so as not to lose the king sized bed. Meanwhile we had to repack all our stuff and leave it with bell services while we were at the park. There was a lot of miscommunication throughout the day and finally at 4:30pm, our new room was ready and we unpacked all over again just in time to make our next dinner reservation.

Because of the inconvenience, the hotel upgraded our room. I was a bit confused at first because I though the only room better than a savanna view room was a suite and this certainly wasn’t that. At AKL there is a $40/night difference in room price between the Uzima view, which was our first room and the Arusha view, which was our new room. One of the other issues was that there were minimal animals on the Uzima savanna the first 24 hours we were there so this mold and room change issue ended up working out for us because we LOVED the new room with the Arusha view. We frequently had zebras, giraffes, elands, springbok, pelicans and all kind of other animals right outside our balcony. Plus the new room was closer to the lobby, without being too close, which was very helpful for me in getting to the bus stop.

Once we were in our new room, we never had another issue with the hotel. We absolutely loved the place. They had plenty of hotel related events and experiences available so that you could learn more about the African culture. Chuck and I both enjoyed chatting with the staff, most of whom were from various parts of Africa. It appeared that they all truly enjoyed their jobs and really went out of their way to make our experience enjoyable.

View from our balcony
 

There are two parts to AKL: Jambo House and Khidani Village. They each have their own bus stop. We stayed at Jambo House and Khidani Village is a Disney Vacation Club location so you have to be a member to stay there I believe. The pool and surrounding pool area is probably the best I have ever enjoyed. There is a zero entry pool which is wonderful for people with disabilities as well as two secluded hot tubs. There is a pool bar, which I found delightful, because they had this awesome frozen drink called a Moscato Colada (SKYY Infusions Moscato Grape, Vodka, Blue Curacao, pina colada mix, and passion fruit/mango foam) and it was nice to have a place to hang out and just enjoy being on vacation. It was a good place for me because AKL property is loaded with trees which meant more shade to keep me from getting sick. I would have liked to have spent more time there but well, there are only so many hours in a day. And only so many days in a vacation!

The gift shop at AKL was probably my favorite as it had so many different types of things. I also liked the fact that in an Disney park, you can have your order sent to your hotel gift shop so that you are not lugging packages around all day. It’s the small things…

I found the food at AKL amazing. On the second night, when we finally were settled in our new room, we ate at Jiko. Jiko is their fancier restaurant and it was really quite a treat. You know you’re in a top quality restaurant when they put the linen napkin on your lap for you. I tried a South African Shiraz wine called Jam Jar and fell in love with it, maybe a little too much so! The chef came out to talk to me to discuss my food restrictions and she made me my own meal (meaning not on the menu) of sirloin steak with a rice/quinoa medley. The appetizer was the best though. It was an African plate I wanted to try with pita bread and different African dips/toppings. I told the chef this and she brought the pita for my husband and brought me something called pappadam, which is made from lentils and is like a very thin tortilla with spices, also gluten/dairy-free. It was very peppery which was right up my alley. The dips included bhuna masala, sagh dahl, Moroccan chermoula, and kalamata hummus. The only one I didn’t like was the kalamata hummus because I don’t like olives. I found the tastes to be exquisite, which surprised me since I used to be such a picky eater.

There is a quick service cafeteria at AKL but we never ate there. However we did eat at another AKL restaurant called Boma. Oh, how I loved Boma! Reason being was that it was a buffet so I could try different dishes I was unfamiliar with and not be stuck hungry because I didn’t like my meal. I also liked it because there were some familiar foods created with African flavor. For example, there was a cucumber salad that I just couldn’t get enough of as well as a cabbage slaw infused with spices. This is also where I tried bobotie for the first time. Bobotie is a South African dish made with minced meat, egg, and some yummy spices. Yes, I just said yummy! It’s all baked together and I think I could have eaten it every day I was there. I did not do gluten/dairy-free at Boma and I am pretty sure the bobotie had bread crumbs in it but I gave myself the leeway considering I was on a good dose of prednisone to protect me. I did that for a few other meals as well during our trip.

We did not have too much trouble with the driving distances from AKL to the parks, but we were there during one of Disney’s lowest seasons. I found that it depended on the time of day you attempted to travel. I also heard complaints about having a hard time getting on the bus if you were in a scooter, because the buses could only take so many scooters at once. Again, not a problem for me. We found the most difficult bus trips were to Downtown Disney and Typhoon Lagoon which can take as long as an hour, depending on traffic. The second furthest destination was Magic Kingdom and the ride took anywhere from fifteen-thirty minutes.

This was my philosophy for our trip (and it came in handy during the room fiasco): We were on our honeymoon and no way in hell was I going to let anything freak me out. When you stay on Disney property and use their bus transportation, you have to accept that at times, it may be slower going than if you have a car. And you’re on vacation, so relax. Overall, I liked the fact that AKL was more removed from all the busyness and craziness of Disney. It was a nice retreat to go to at the end of the day and enjoy being on vacation. We had seen a few other resorts during our stay and I have to say, we saw far less children at AKL compared to those other resorts. I love kids more than anything but well, I don’t have any and I was on my honeymoon. I was more than fine with leaving them behind at the Magic Kingdom!

Despite the inconvenience of our first twenty-four hours at AKL, I would definitely stay there again: the architecture, the smells, the music, and the food; all an experience I will never forget.

Traveling To Disney With Sjögren’s

I have decided that to take blog vacation. This means that after today I will not be accessing my blog or my Facebook blog page so if you leave comments please be patient because they need to be moderated before they appear on the blog. This is a bit of a big deal for me because in the three and a half years I have been blogging, I have never taken a planned break. On the occasions where I have been away from home, I have still checked my blog via iPhone. The reason for this was simple. I have worked so hard at developing Thoughts and Ramblings and my readership that I was afraid to not be on top of things. I didn’t want to lose momentum. However a lot has gone on recently with the publishing process of my first book, Tales From The Dry Side: The Personal Stories Behind The Autoimmune Illness Sjögren’s Syndrome, the Kickstarter funding project, getting married, and dealing with new health issues. I think overall I have done a good job in keeping up with my blogging/writing as well as the numerous e-mails and other correspondence that has resulted from all of this. But it’s time. Everyone needs a vacation.

I will be off the Thoughts and Ramblings grid until about October 2nd. During that time I will be going on our eight day honeymoon to Disneyworld which is the subject of today’s blog entry. I have only been to Disney once and I was about twenty-one years old. I was in college and three of my friends and I (hi Tina, Lauren, and Ellen!) drove there for spring break. We stayed at a Red Roof Inn somewhere off the Disney property and endured the very long ride both ways. We were young and relatively broke but none of that mattered. We had a great time.

A lot has changed since that Spring Break trip all those years ago. There are new attractions at Disney; a whole new park even as Animal Kingdom was not built back in the early 1990’s. New resorts, new restaurants; a whole different experience probably. A lot has changed for me since then as well. I’m twenty years older and let’s face it, not in the best of health.

Traveling for me is difficult. Since I got sick in early 2008, I have only flown once and it was for a two day trip to Ohio; about a two hour trek. I ended up in the hospital within two weeks of coming home. The rest have been car ride getaways. The longest was about five days and that was one time while a few others have been two-four days. I can say that in the last five years I have never taken a trip that has not made a negative impact on my health in some way; some bigger than others. But I plan as well as I can and just take the risk. Life is too short not to.

This trip is a biggie for someone with Sjögren’s. Longer time in the air flying. Have I ever mentioned how dry airplanes are?? Lots of physical activity since it is Disney. Loads of food restrictions to deal with. Heat and sun since it is Florida. Standing in lines. Traveling with a ridiculous amount of medications, supplements, and medical supplies. However I have done quite a few things in preparation for this trip that I think will work to my advantage on this amazing honeymoon that we have planned. They are as follows:

* The single most important thing we did when planning this honeymoon was to not book it for right after our wedding. I was a little concerned that going on our honeymoon four months after our wedding would take some of the magic or fun out of it. Absolutely not. I am extremely excited for this trip. Weddings are exhausting no matter who you are. I am a million times more rested and ready for this trip now than I would have been back in May. We had gone away for a few days to a bed and breakfast in our home state after the wedding but that was MUCH different than this Disney trip. Plus we didn’t do much while we were away in May. My full attention is on the experience we are going to have on this trip rather than reliving all the memories and details of the wedding. I would strongly suggest doing this to any bride and groom, not just to those who have to deal with chronic illness. I was married before and had a honeymoon right away so I do have a basis of comparison. Do it the way I did this time around. It will be better, I promise!

* We booked a hotel on property at Disney. Besides the fact that it is just a cool experience in itself, it cuts down on travel time to and from the Disney parks, attractions, etc. and it saves on having to walk from the parking lot to the parks and back.Staying at a Disney property also makes you eligible to use their luggage service. You check in your luggage at your home airport and you don’t see it again until you get to the room at your resort. Same for the trip home.

* Pre-booked many of our reservations, especially dinner reservations. While this is typically suggested for anyone wanting to eat at Disney, it is also important for someone with food restrictions because it gives the restaurant a heads up as they were told about the restrictions when the reservation was made. We were also careful not to overbook so that we had some flexibility in case I was struggling with my physical issues.

* Got a letter from my rheumatologist stating that it was difficult for me to stand for periods of time and difficult for me to be in direct sunlight or excessive heat. There is something at Disney called the Guest Assistance Card (GAC). The GAC card alerts the cast members of your limitations so that appropriate accommodations can be made. For example, if there is a long line for an attraction, they may have me wait in a shaded area without losing my place in line. You DO NOT need a doctor’s note to obtain a GAC card but I thought it helpful in case they need clarification on what to put on my card as they are not all the same.

* Got a letter from another doctor stating that I need to be allowed to bring prefilled syringes on the plane. I also bought this awesome small, collapsible cooler bag for my carry-on to keep the syringes cool as they need to be refrigerated. It will also be helpful to store my refrigerated eye drops in it.

* I sucked it up and rented a scooter for the week. There is a previous post on this from last week if you’d like to read it. I will be curious to see how much I use it. The scooter gets delivered and picked up right to your hotel.

* Starting what will hopefully be a short course of prednisone in preparation for my trip and during it as well. I am looking forward to it. My rheumatologist felt that I should have been on it five months ago.

* I have never used a scooter before so I went to Target and practiced on one of theirs. That was an excellent idea and I highly suggest it if you rent a scooter for the first time. Better to crash into a display at Target than someone’s leg at Disney!

* There are several grocery stores in Orlando that offer delivery service. I submitted an order with Orlando Grocery Express and it will be delivered the morning we arrive. The great thing is if we are not there, our hotel will keep it for us until we arrive. I did this for several reasons but mostly because I drink an obscene amount of water so I ordered a few cases along with some drinks my husband likes. I ordered some gluten-free snacks and breakfast items as I am not a big breakfast person. I also came up with the idea to order some toiletries, such as shampoo, soap, and face wash, so there is less to pack in the suitcase. Less toiletries equals more room for medical supplies.

* Speaking of, I raided the trial size bins at several local stores. Target has the best selection and amount of trial size items.

* We have one tour at Disney that promised to be challenging for me physically, the Wild Africa Trek at Animal Kingdom. I almost said forget it and then that little voice in me said “go for it, you only live once.” However we booked it for early morning the day after we get there. I didn’t want to wait until later in the week when there might be a chance of feeling more exhausted.

* I did a lot of planning via books and online. You would be amazed at how much is out there in the internet world about traveling to Disney with a disability. A special shout out to my friend Kristen at Sjoggie StAHMer. She has Sjögren’s and has traveled to Disney with her husband and young daughter. She had some excellent advice!

* Booked our honeymoon for one of the least busiest times at Disney. This will mean less crowds and most likely, shorter waiting times.

* Booked airport parking with a company that handles your luggage for you on and off the shuttle bus. I am traveling with someone but he only has so many hands.

So that is pretty much it. I think the most important thing to remember when planning a trip like this is to use whatever means are available to you to protect your health. The more energy you can conserve during the trip, the more likely you are to enjoy it. Those of us who live with any type of autoimmune illness or chronic disease tend to have less opportunities to travel than many people so it is important to make the most out of our trips. Especially honeymoons!

I am thrilled beyond belief and feeling blessed that my husband and I have this opportunity. As excited as I am, I am especially excited about the opportunity to spend EIGHT whole days with my husband. No work, no commitments, no places that we have to be. Eight days with no medical appointments or afternoons on the phone arguing with insurance companies. No bed to make in the morning. No dishes to wash.

Just him and I.
Perfect.

Our Wedding Vows

During my fall cleaning this week I came across our wedding vows. I thought it was quite appropriate since we are leaving in thirteen days for our honeymoon. Looking at each of our vows on paper is interesting because it reflects each of our personalities, especially in the length. It was also interesting because I think I didn’t take all that much longer to recite my vows because I talked so much faster!Enjoy.

Chuck’s Wedding Vows:

Christine, you are the one for whom I waited and I take you as my wife today, my lifelong friend, love, and partner.

I promise to support you in all that you do, to encourage you, and to try and inspire you.

I promise to care for you when you need it and to let you take care of me when I’m in need.

I promise to try to make you laugh, and try harder not to make you cry.

I promise to always listen to your questions and concerns, and to try really hard to respond to them in a timely fashion.

I promise to always appreciate how lucky I am, to love you, and to show that love to you each and every day, in the winter as well as the summer, and on rainy days as well as sunny ones, forever.

All I have, all that I am, all that I will be, is yours.

Chris’s Wedding Vows

Love by Roy Croft
I love you not only for what you are but for what I am when I am with you.
I love you not only for what you have made of yourself but for what you are making of me.
I love you for the part of me that you bring out.
I love you for putting your hand into my heaped-up heart
And passing over all the foolish, weak things that you can’t help
dimly seeing there
And for drawing out into the light all the beautiful belongings that no one else had looked quite far enough to find.
I love you because you are helping me to make of the lumber of my life
Not a tavern, but a temple.
Out of the works of my every day
Not a reproach, but a song.
I love you because you have done more than any creed could have done to make me good
And more than any fate could have done to make me happy.
You have done it without a touch, without a word, without a sign.
You have done it by being yourself.

So I Christine, take you Chuck, to be my husband. For better or for worse, for richer or for poorer, in sickness and in health. On this day I promise to be faithful and true to you and only you.

I promise to step outside of myself in order to meet your needs and our needs as a couple.

I also promise to never interrupt or start a conversation during a Celtics play-off game. But only the play off games.

I promise you that I will never take our love for granted.

I promise, from this day forward, to never ever complain about you messing up my bed pillows at night, when all you want to do is be close to me.

I promise that whenever necessary, I will put your children’s needs before my own.

I promise to treat your children and their sisters with the same amount of caring and respect that you treat them with.

I promise to trust you implicitly and without reservation.

I promise to always be your best friend. The person you can count on to confide in and to lift you up when you are down. I will be the gentle hand in the middle of the night and your port in every storm. I promise to do my best to make the rest of our lives together full of joy and laughter. I will always honor our marriage and I will love you all the days of my life.

30 Things You May Not Know About My Invisible Illness!

I follow a blog called Interstitial Cystitis: Catherine’s Journey and she did a blog entry based on a questionnaire she found on an invisible illness website. I read it and thought it was a great way to better inform people about what it is like to live with Sjögren’s syndrome, which is usually an invisible illness. It’s ironic because I just talked about invisible illness in my previous blog entry on scooters and Disney. So here is my questionnaire. Please feel free to copy and paste and to your own. Awareness is critical!
 
 

In honor of National Invisible Chronic Illness Awareness Week (September 9-15, 2013), they asked those of us suffering with chronic, invisible illness to answer the question: “30 Things You May Not Know About My Invisible Illness”.  Here are mine:

  1. The illness(es) I live with are: Sjögren’s syndrome. Also Factor V Leiden, Hypothyroidism, PCOS, Asthma, ?Interstitial Cystitis, Esophageal Motility Disorder
  2. I was diagnosed with it (Sjögren’s) in the year: 2011
  3. But I had symptoms since: 2007-2008
  4. The biggest adjustment I’ve had to make is: Being out of work and on disability; having to take rest periods throughout the day.
  5. Most people assume: A lot. Specifically that I must be feeling well because I “look” fine and that I am taking advantage of the system because I am young and disabled/on Medicare. 
  6. The hardest part about mornings are: Figuring out how I am going to prioritize my day.
  7. My favorite medical TV show isGrey’s Anatomy. 
  8. A gadget I couldn’t live without is: My laptop. It makes writing easier and keeps me connected to the world on days I cannot leave the house.
  9. The hardest part about nights are: Pain. My pain is usually worse at night. And not sleeping.
  10. Each day I take: At least 15 pills/supplements. And that is an improvement.
  11. Regarding alternative treatments: I have been doing this for about 10 months. I am not as convinced that alternative medicine can “cure” autoimmune illnesses but I have had significant improvement with a lot of my issues so I think alternative medicine is a critical aspect of my treatment plan.
  12. If I had to choose between an invisible illness or visible I would choose: Neither. This is a dumb question.
  13. Regarding working and career: I miss it. I miss caring for other people on a daily basis and I miss the intellectual challenge of working in the medical field. I enjoy writing but I have come to find out that I enjoyed “going” to work.
  14. People would be surprised to know: I get sick of hearing people complain sometimes. Not my friends who confide in me about something, even about minor matters. But I get sick of  people complaining on Facebook about the stupidest things. I try to sit back and remember that everyone’s issues are different and important to them. It bothers me when people are always (note that I said always) complaining about their kids. Be grateful you have them.
  15. The hardest thing to accept about my new reality has been: That I will never be cured.
  16. Something I never thought I could do with my illness that I did wasWrite a book which is currently being published!
  17. The commercials about my illnessDon’t exist! 
  18. Something I really miss doing since I was diagnosed is: Being able to just “get up and go” whenever I want; being spontaneous; working. Most of all I miss waking up and physically feeling good.
  19. It was really hard to have to give up: Some of the foods I used to enjoy; my nursing job.
  20. A new hobby I have taken up since my diagnosis is: Writing!
  21. If I could have one day of feeling normal again I would: There are SO many things! But since it is only one day, I would go skydiving.
  22. My illness has taught me: What it is like to truly physically suffer. It has taught me to be grateful and humble. It has taught me the value of true friendships and the necessity of keeping toxic, negative people out of my life. It has taught me who my real friends are. It has taught me to appreciate the everyday events in life.
  23. Want to know a secret? One thing people say that gets under my skin is: Advice on how to handle my illness. This is a fine line. I am OK when somebody mentions something to me once i.e.: a Paleo diet. But it ticks me off when they bring it up over and over again. It also upsets me beyond all reason when someone I know tries to sell me some “miracle cure”. Completely classless. Luckily, it doesn’t happen often. There are a few other things but those are the biggies.
  24. But I love it when people: Call me or check in via e-mail. Spontaneous visits. I love it when people tell me that my writing has made a difference in their life.
  25. My favorite motto, scripture, quote that gets me through tough times is: Way too many to list. If you go to my blog’s Facebook page, you will see what I mean.
  26. When someone is diagnosed I’d like to tell them: Never, ever give up.
  27. Something that has surprised me about living with an illness is: That I am happier now than before I was diagnosed.
  28. The nicest thing someone did for me when I wasn’t feeling well was: There is no one thing because so many people have done so much for me. Things that I appreciate a lot though include: offering to bring me lunch or dinner, offering a ride to an appointment, sending me regular mail (like in the mailbox!), making me laugh, talking to me about anything besides me being sick.
  29. I’m involved with Invisible Awareness Week because: I think it’s important to help raise awareness and educate others about what those of us living with invisible illness(es) are really going through each and every day.
  30. The fact that you read this list makes me feel: Hopeful!
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