For Everything There is a Season

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

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The Impact of Tales From the Dry Side

November 8, 2013 / / 6 Comments

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

October 30, 2013 / / 2 Comments

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

October 19, 2013 / / 2 Comments

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

October 12, 2013 / / 3 Comments

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

October 9, 2013 / / 3 Comments

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.

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