Saturday, November 30, 2013
If you are a Facebook user, check out the Thoughts and Ramblings on Life, Love, and Health Facebook page. You can get there by clicking the link to it on the right hand column of this page or by typing the blog's name in your Facebook search box.
The rules of the contest are that you must comment of the FB status update regarding the contest that I posted today, November 30th. It can be a comment or a question but must be about the book. You also must share the link for that post on your own Facebook wall. The deadline is December 3, 2013 at 9pm EST. The winner will be chosen by using Random.org and the prize is a free paperback copy of Tales From the Dry Side. It is a $15.95 value and includes shipping and handling.
If you enter, please make sure to check back with the page Wednesday morning to see if you are a winner so that I can then obtain your mailing address.
Thank you and good luck!!
Friday, November 29, 2013
About seven weeks ago, I decided I was going to attempt running. For more of the back story on that, you can read about it here: Running, Sjögren's, Races, and Disney.
As I mentioned in that blog post, this running thing is a big deal. First and foremost, it is a big deal because of my autoimmune issues, which include problems with my joints, asthma, fatigue, etc. The second reason it is a big deal is because I was told that I would never be a runner due to these issues. I will admit, it has been a challenging seven weeks. The very first time I ran, I thought there was no way in hell I could keep this up, never mind get up to the 3.1 miles needed to run my first 5K. At that point, a race was just a pipe dream.
For the first two or three weeks, I would run only a mile, and then feel like I was going to die afterwards. But also like I mentioned in the previous blog entry, I became very dedicated to doing strength training and other activities, such as yoga and Pilates, which would help prevent injury and make me a stronger runner. This week, I was able to run 2.30 miles; all at once even! It was an amazing accomplishment.
This blog entry is about more than that though. It is about the mindset we have and the self-esteem issues that sometimes haunt us well into our adulthood. Never an easy thing to write about and then present to the entire world in a blog. My thought is that if I feel this way, my guess is there are other people with similar thoughts and fears. It's important for all of us to know that we are not alone.
During my first few weeks of running, I ran into some significant issues with inner knee pain. I had been fitted for running shoes at a specialty running store years ago, as I wear them for any type of exercise. My current pair was only about two months old. I also had orthotic inserts in my running shoes that an orthopedic doctor suggested earlier this year when I developed plantar fasciitis. I wasn't sure if the knee pain was from my joints, from being new at running, from being overweight, or what have you. I was getting concerned that I had to ice my knees after every run. I did some research and found out that it was possible that the type of running sneaker I had, in addition to the orthotics, might be too much for me. I then came across the website for a running store in West Hartford, CT called Fleet Feet. Their website had an injury section and which stated that they had a full-time Sports Medicine Director/Athletic Trainer on staff, Stacy Provencher. Furthermore, they offered free injury assessments and could make recommendations based on the assessment. I thought maybe this was a person who could help me, so we set up an appointment.
Here is where I ran into problems. I had been to a running store before and had felt uncomfortable, but it was a few years ago, it was a very small store, and there were no other customers in the store while I was there. But this running store was much bigger and it was relatively busy for mid-week.
I felt self-conscious; and I mean VERY self-conscious.
See, I don't look like a stereotypical runner. I am overweight, a bit klutzy, and it is possible that the only reason I can run at all is right now because I am on a course of prednisone. As I was walking up the street from my car towards the store, I felt like an impostor. Like I was just pretending to be a runner. Like I didn't belong.
This is not the first time I have felt self-conscious about running. I have felt the same way when I pass other runners pounding the same pavement as me. Up until last week, I wouldn't even run with another person, no matter who they were...not even my husband. I thought I looked too awkward and ran too slow. But as the weeks went on, I began to realize one thing: I AM a runner. I work just as hard, probably even harder than most people who do not have autoimmune issues, just to run a mile. However as I walked into that running tore, my new-found confidence evaporated.
I knew they would be doing an analysis of my running on a treadmill. I don't run my entire run; I use the Jeff Galloway run/walk method. At the time, I was running a minute, walking a minute, running a minute and switching off like that every minute. So essentially, I was only actually running 1/2 a mile. What if I couldn't run long enough to do the analysis? What if everyone stared at me wondering what the fat girl was doing in a running store?
You know what? I had a great experience at Fleet Feet. Stacy was great and treated me just like any other runner. She analyzed my gait and put me through various tests. We determined that my current shoes and orthotics were fine for now. It seemed to be that the issue was not actually with my knees, but with my hips. I had hip weakness, which directly affects the knees. She also though that part of the issue could be I was a new runner. She gave me some ideas for strengthening exercises I could do and just as importantly, introduced me to the foam roller. I will do a blog entry about the foam roller at a later date because it is just that awesome.
After my assessment with Stacy, I wanted to just pay for my foam roller and leave. But, the thing was, there was stuff I wanted to look at. There was all kinds of neat running gear and I had been wanting to try some specialty running socks to see if they made a difference for my feet. I forced myself to take my time and browse through the store, just like I would if I was at a regular department store. I made eye contact with people. I acted like I belonged there. It wasn't easy, but there is something to be said for the phrase "fake it till you make it."
On the drive home from the store, I realized that while I am sure there are people who make judgments about overweight runners, the majority of my fear and insecurity was in my own imagination. Sure I know I am a slow runner and my cardiovascular status could use a lot of improving, but you know what? I am out there. I run when I am tired or when it rains. I run when it is ten degrees out and sometimes as early as 7:30am if it is the only time of day I can get it done. That is what makes me a runner; not the shape of my body or how my butt looks in spandex.
Since my appointment with Stacy and having worked on my strengthening, stretching, and cross training, my knee pain has disappeared. Of course I get leg pain later in the day on the days that I run and boy, do my muscles hurt at times, but I am no longer fearful that I am doing something to hurt my body. I no longer have to ice my knees after runs and I can feel the strength developing in my hips; not to mention how much stronger my legs look and feel.
I do belong in the running world because runners are dedicated and determined. They are courageous. Because I am weaning down on my prednisone dose, I cannot predict how this is all going to turn out for me. What I do know is that in thirty-four days, I will be running my first race: a 5K on New Year's Day.
A race to start fresh a new year.
My first full year as a runner.
Tuesday, November 26, 2013
Monday, November 25, 2013
Well, it would appear that Amazon is really on the ball these days because Tales From the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjögren's Syndrome is already available for purchase from their website; both in paperback and Kindle formats. There is a link on this blog page, in the right hand column, that will take you directly to the book's Amazon purchase page. I cannot even tell you how long it took me to figure out how to get that widget on my blog....or even figure out that a widget was what I needed!
The paperback version and an eBook are also available directly from the publisher at www.outskirtspress.com.
The Barnes and Noble Nook account is still in the process of being verified, but I will put out a notice when that is set up for all you Nook fans!
The Sjögren's Syndrome Foundation has been in contact with me and their plan is to launch the book from their organization, via their book store and newsletter, sometime in February/March, which will be right before their Annual National Patient Conference in April. I will be attending that conference in Chicago in order to do a book signing during the event.
I have had a lot of help today with publicity and marketing from many of my fellow book contributors so a big thanks to them and to my family/friends who have been helping to spread the word. It has been quite an exciting day around here!
Friday, November 22, 2013
Tales From the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjögren's Syndrome: Published!
I got an e-mail today confirming that Tales From the Dry Side was officially published. Very exciting news!! It has been almost exactly two years since I first got this project underway and I have to say, this is a great day. So much work on the part of so many people: my story contributors, my family and friends, my Kickstarter contributors, and my community. I owe you ALL a debt of gratitude.
There will be some lag time until the general public can actually get their hands on the book. The publisher is mailing me a hard copy for my review so I can make sure they did not make any mistakes when it went to press. Once I review it, I will order all of the Kickstarter books and get them in the mail ASAP.
What happens is that is takes the wholesale distributor (Ingram) about two weeks from today to get the book listed with the retailers (i.e. Amazon) and then the retailers will need some time to get the book listed on their sites. You will be able to purchase the book through a variety of retailers either in hard copy or eBook format. The regular copy is $15.95 and will be available through the Outskirts Press bookstore, Amazon.com, and Barnes and Noble.com. All three retailers will also provide the eBook format for $4.99 (Amazon and Barnes and Noble) and $5.00 (Outskirts Press). I will be honest: the commission I receive on the eBook is much less via Outskirts Press. I am looking to use my initial royalties to pay stipends to my story contributors, so it does matter. Most importantly, after I receive and review the hard copy, The Sjögren's Syndrome Foundation (SSF) will be ordering and carrying the book in their bookstore. If you are a member of the SSF, PLEASE purchase it through them as it will be offered at a discounted rate to you and the SSF will profit from the sale. Money for Sjögren's research equals a win for all of us.
I will be following up with the marketing representative from Outskirts Press regarding the book going into traditional brick and mortar bookstores such as Barnes and Noble. Since I am new to the book publishing business, this is definitely a learning curve for me. The amount of information I received just today has been overwhelming, so one step at a time. The book has been priced and trade discounted to allow for maximum exposure in traditional bookstores.
I will be posting updates on this blog page regarding the book and frequent updates on the blog's Facebook page which you can find by typing in Thoughts and Ramblings on Life, Love, and Health into the Facebook search box at the top of the page.
Thank you all once again for your support!
Sunday, November 10, 2013
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.
Friday, November 8, 2013
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....
Change the world in a small way.