Tuesday, December 31, 2013

Looking Back And Looking Forward

I had a moment yesterday. Like one of those moments (actually, several moments) where you realize something important. I was lying on an exam table, having an abdominal ultrasound done. It wasn't a big deal, minus the fact that the tech was specifically looking for my gallbladder and that little booger was tough to find. I go for ultrasounds every several months to check a previously suspicious growth that is attached to the gallbladder.

I first found out about this growth in November 2012 when I was hospitalized with dehydration, vomiting, and stomach pain. It ended up that the issue causing my symptoms was an esophageal motility disorder, mostly likely related to Sjögren's. I also had severe GERD. When they did a bunch of tests to initially find out what was going on, a surgeon appeared in my hospital room telling me that by the way, they also found this thing on my gallbladder that shouldn't be there and although gallbladder cancer is very rare, we might have to consider surgery to remove the entire gallbladder.

More tests and investigation ensued and the end result was that this "thing" had showed up on a CT scan three years prior. I don't know if the doctor at the time read the report, but I was never told about it. Yes, you have to love our health care system. But truly, it was good news because by comparing the scans, it was obvious that the growth did not change at all in size or shape during those three years. That made it highly unlikely that this was a cancer of any sorts because to be frank, I would probably be dead. After months of discussion and more scans, it was decided that this was likely something I was born with and since I had no specific gallbladder symptoms, we would just monitor the growth.

At this point, I feel that the continued scans are a bit overkill, but I respect this particular specialist and trust his judgment. I have to tell you though, it was a horrible time for me. I was dealing with the symptoms at hand and this gallbladder scare on top of it. My mother-in-law was very sick at the time and honestly, I don't even know how my husband and I got through it all.

This brings me back to the exam table yesterday. The tech made a comment about how much easier it was for her because I was good at taking very deep breaths. She jokingly said that I must have a lot of experience doing so.

True enough.

Then this realization hit me. I have had significantly fewer medical appointments over the past few months and the impact of that has been huge. Overall, I am much calmer about my health issues. My last big crisis was over the summer with bladder issues, but things have been quieter since September. I am very well aware of the fact that this is when I started prednisone again, but I don't think the reason is that important. Although I continue to struggle every day with different Sjögren's related issues that significantly impact my life, I am not in crisis mode. Looking back over the past several years, there have been weeks and months where crisis mode has been the norm around here. I do not exaggerate when I say that I have had weeks that have included anywhere from seven-twelve medical appointments in one week. How do we live like that? How do we get through each of those dramatic and tedious weeks to the other side? One step and one day at a time.

So as my day continued yesterday and through this morning, I reflected on all of this. Sjögren's is so unpredictable. I could write this today and be in the hospital by the weekend with some unsuspecting complication. But, I have gotten better about not worrying when the next medical crisis will hit and rather, I have tried to fully live the day I have in front of me.

Taking one day at a time has served me well this year. To say that 2013 was a big year for me would be an understatement. I got married (with a two day wedding!), traveled to Disney for our honeymoon, conquered my fear of heights with parasailing, ran a very successful Kickstarter campaign, and published my first book. I reevaluated a lot of my relationships. I made new friends and lost some friends as well. I have learned a lot about myself and about other people. I have rejoiced. I have mourned.

That's a lot. And I did some of this in between medical crises, and sometimes even during them. I think that is why I no longer make New Year's resolutions: my life is a constant resolution. To be healthier, stronger, more relaxed, more patient, and more tolerant. I consistently work on finding ways to be a better and stronger person. Sometimes it means learning how to say no. Sometimes it means saying yes. This year in particular, it has meant setting boundaries with other people and learning that no matter who it is (i.e. not just my partner), we all deserve to be treated with respect, kindness, and love. Becoming a stronger person this year has meant that I have learned to respect where someone else is at, to forgive, and to truly move on. Most importantly, I have continued to just be myself and not worry about what people think of that.

So while I am I am excited to see what the journey of 2014 is going to look like, I will miss 2013. I am grateful for all the beautiful moments and the growth that I have experienced. However I must say that part of me is looking forward to not having so many big events and instead, just savoring the little pleasures and joys of each day.

One day at a time.


Do you make New Year's resolutions and have you made any for 2014?

Monday, December 9, 2013

What Does It Mean To Love Someone?

I have had the topic of love on the brain lately. And by love I don't mean just the romantic kind, but rather, the love that exists between two human beings, no matter what the relationship is. I was married six months ago, I went to a family wedding recently, I have ended several relationships in the past year for one reason or another, and I have this crazy dog that is getting older whom I love more than just about anything else in this world. My capacity to love is great and my ability to receive love is even greater.

We are so reckless with the term "love" sometimes. The words come tumbling out of our mouths, sometimes without a second thought. Maybe I am a bit of a skeptic on this topic, but to me, there is no such thing as love at first sight. I can hear the readers gasp as they read this, as I have made no secret about my overwhelming and whirlwind courtship with my husband. My attraction to him was immediate, but I did not "fall in love with him" at first sight. That was more of a chemical pheromone reaction.  I fell in love with him when he talked to me on our first date about the impact that his sister's Multiple Sclerosis has had on him. I fell in love with him when he talked about his two children and what it was like to raise them. I fell in love with him when, seeing how exhausted I was one evening, he went to find the leash and took my dog out for me before he left my apartment for the night.

I have had people tell me they love me at times and it has made me scratch my head: a new friend who tells me she loves me as she is verbalizing, in detail, all the ways in which I have failed as a friend. There is a fine line between open communication and honesty, and someone who is holding your hand to the fire while they are saying things supposedly for your own good. I have received e-mails that start with "I love you but...." while they continue to describe the ways that I have been wrong. I have also done the same; believing that by reminding a person that I love them, it will somehow lessen the blow of my honesty. I have had people tell me they love me while looking me directly in the eye and tell me lie after lie. These events are not exclusive to me; they happen to us all and as human beings, we are capable of doing them to other people.

While thinking about what it means to love, it has raised the question for me if we always understand what love is about. We, as a society, are so frivolous with the word, love, itself. We love this person and that person, oftentimes before we even develop a true relationship with them. We say we love someone based on their gregarious personality, or their compassion for other people, or maybe even because we are obligated to, because they are related to us.

But what is love really about? I don't pretend to have all the answers, but I know what it is not:

It does not envy.

It does not boast.

It is not self-seeking.

It is not proud.

It does not dishonor others.

Thank you Corinthians 13...

I know love is much more complicated than that. But we all have to start somewhere. Corinthians 13 also says that "love never fails." But is this true? We hear it said at so many weddings nowadays, but yet half of all marriages end in divorce. Does that mean that we never really loved in the first place or is it possible for love to fail? Or maybe it is more accurate to say that we, as people, failed?

I heard it said recently that love is a verb and not a noun. I understand the point the speaker was trying to make: that love is an action. But, I disagree that it is not a noun. Yes, love is an action or a verb. We love someone. We show love to someone. We do acts of love. But to me, it is also a noun. Love is this THING that is so much greater than ourselves. It is a spiritual force that drives us to do things that we may not normally do, or even want to do. Love compels us to accept those in our lives, despite their faults. Love compels us to forgive. Love is the presence in our homes, churches, schools and such that make our souls sing...

It is patient.

It is kind.

It always protects,
always trusts,
always perseveres,
and always hopes.

That is love.

Saturday, December 7, 2013

My Sjögren's Update (And It's Not About The Book!)

I think it has been a little while since I have posted an update about how I have been doing medically. There are many reasons for that; I was away on my honeymoon, I have been tied up with the book being published, and most importantly, I have been feeling better.

I started back on Plaquenil sometime in August as it was clear that the alternative medicine treatments alone were not doing the trick. They help, a lot, but they were not enough to keep me from having more complications, such as with my bladder. I wasn't doing terribly, but there was a lot of room for improvement, hence why I went back on Plaquenil. I never thought Plaquenil did much for me in all the years I was taking it, which is why I stopped it in February, but I may have been mistaken on that.

By the middle of September, I was still having a lot of issues with increased joint pain, especially in my shoulders, hips, and hands, swollen lymph nodes that were causing some alarm, fatigue, and this new interstitial cystitis issue with my bladder was still not under control. I had gotten a lot of relief with the bladder issues after going in for surgery to have a hydrodistension done, but my symptoms were starting to return, although not nearly as severe as in previous months. My urologist and I came up with a plan to start bladder instillations every two weeks for twelve treatments...at a hospital two hours away from me. Oh, the joy!

Since I was leaving on my honeymoon for Disney (we were married in May) at the end of September, I decided to heed my rheumatologist's advice and go back on prednisone, hopefully for the short-term. About eleven days before we left, I started on 20mg once a day of prednisone. Within 72 hours, the change was dramatic. My joint pain was resolved, I had more energy, ALL of my bladder symptoms were completely gone, and within another week, my lymph nodes were back down to an almost normal size. We even decided to hold off on the bladder instillations.

Now, I have a long and intense history with prednisone use which you can read about if you go back to the main page of this blog and click on the prednisone tag under "labels". It has been quite a while since I needed to be on prednisone for longer than a week and notoriously, I have a lot of side effects which make me want to get off of it as soon as possible. This run with it, initially, was much easier and it makes me wonder if my alternative medicine therapies had anything to do with that. I was getting so much accomplished; I even took up running! I did have to stop my alternative therapy, low-dose naltrexone, because I thought I had too much energy and because both medications give me insomnia, I wasn't sleeping well. Coming off the low-dose naltrexone helped tremendously.

I was doing so well that it made me wonder if maybe the risk of staying on a higher dose of prednisone long-term was worth it. That whole quality of life over quantity thing and all. I began to realize that if I could stay on this dose, I could probably start thinking about going back to work part-time, or at least on a per-diem basis. After a few weeks, I weaned the dose to 15 mg and was still doing well, and then went to 12.5 mg and then 10mg. Within a week of being on 10 mg, I really began to struggle with my symptoms again so I went back to 15 mg, knowing that I had a rheumatologist appointment coming up soon.

Two weeks before my rheumatology appointment, things began to get tougher for me. I was still feeling good on the 15 mg, but I had put on a lot of weight, despite exercising 4-5x/week. Fifteen pounds to be exact...in less than two months. That, I could deal with. More concerning were the mood swings I was beginning to have. I was struggling (and still am) more than people knew with depressive mood swings, anxiety, and becoming easily frustrated. I tried to keep my head down, but it was wearing on me. The good thing about having been on prednisone so often is that I knew it was medication related, and I have a lot of experience at managing these symptoms. But, it was kind of putting a big damper on that whole "better quality of life" thing. I have had bad prior experiences with psychiatric medications and for me, they are not the answer, so I worked on increasing my exercise, exposure to sunlight, stress management, etc.

I did talk to my rheumatologist last week at my appointment about the side effects. My blood pressure was also elevated and the only time that happens is when I am on larger doses of prednisone. She told me it was time to come down on the prednisone. I will be honest, I was very upset. I explained to her that I tried that already and after much conversation, she made me realize that I came down on the dose too quickly. I have a bad habit of trying to do things my way and you know what? I am sick of it. Historically, I get no benefit from being on less than 15 mg of prednisone but this time, I am doing it her way. Not 50% her way, or 80% her way, but 100% her way. So we are weaning the prednisone down by 1 mg every two weeks until I get to 10 mg and then we wean it 1 mg every MONTH. The goal is to get on as low a dose as possible...or even off of it.

I don't have any other treatment options at the moment besides my Plaquenil and alternative treatments. We had discussed the possibility of enrolling in a clinical trial for a new medication, but I was disqualified from entering into the study because of my lymphoma and radiation treatment history from seventeen years ago.

I am scared and I am discouraged. I don't want to go back to feeling the way I did over this past summer, or even last year. The only analogy I can think of is that it is like being blind...getting your vision back for a few months...and then being told you will likely be blind again in a couple of weeks or months. Yes, I know being blind is extremely difficult, but it is the only analogy I can think of to explain the terrible feeling that comes with it. Don't get me wrong, I am SO grateful for these past two months. I have accomplished much and literally have made the most out of every single day I have felt better. I have had a few wonderful adventures and done things I never thought possible. But at this point, I have to trust the opinion of my doctor and that being on prednisone at the dose I was on, on a long-term basis, is not in my best interest. I have to have hope that maybe I will not backslide too much.

But what is in my best interest? Struggling to get through every day? Going on and off prednisone every couple of months to quiet things down temporarily? Wondering if the back and forth on the prednisone is better or worse for me in the long run as compared to just staying on it? There are no clear answers and unfortunately, my doctor and I do not have a crystal ball to predict the future. So I am hanging on tight to my faith as I begin the slow journey of cutting back my prednisone. I will have to tighten up on my diet, self-care, and likely restart my low-dose naltrexone.

The good news is, I will likely lose some weight and my moods will definitely even out. I am sure my husband will appreciate the latter.


And here we go....

Friday, November 29, 2013

Mentally Becoming A Runner

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

Tales From the Dry Side: Nook Edition!!

I found out this afternoon that the Barnes and Noble Book edition is now available for purchase at $4.99 for all you Nook fans. You can find it at www.barnesandnoble.com


Monday, November 25, 2013

Tales From the Dry Side Now Available!

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

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:


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:


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

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....

Change the world in a small way.

Thank you.

Sunday, November 3, 2013

Women of Faith

This weekend I had the opportunity to once again attend a Women of Faith (WOF) conference. For those of you not familiar with Women of Faith, it is an organization that runs events all over the North America. They are a Christian-based group based in Plano, Texas. They produce several types of inspiration events with a mission to connect or reconnect Christian women with their faith. The arena events are scheduled throughout the year and every year, there is a different theme. The theme for this year's conference was "Believe God Can Do Anything"." Last year was the first year I attended the conference and to be honest, I am not sure how I originally heard of it. But I had the opportunity this year to go again with my aunt/friend, Jean, and once again, I was not disappointed.

Like last year, I was also not feeling well once the first weekend of November came around. Last year, I was struggling with sudden abdominal pain and some vomiting. I ended up in the hospital about two weeks after the conference with what ended up being some complications from Sjögren's syndrome. This year, my issues were much less significant, as I had just come down with a nasty cold. I was very much looking forward to going to the conference and spending time with Jean, so I loaded up on Dayquil and Motrin, and off we went to Hartford, CT.

View from the 18th floor of the Hartford, CT Hilton at dusk

We stayed at a different hotel this year. I live about an hour from Hartford, but the evening conference on Friday is 7-10pm and resumes on Saturday from 9am-5pm. It's worth booking a hotel room. This year we stayed at the Hilton in Hartford, which is directly across the street from the XL Center; where the conference was being held. Talk about convenience! It was also helpful that the hotel had a restaurant which gave us a good option to the junk food offered at the arena and the gluten-ladened box lunches that were provided for a fee at the conference. The restaurant even made me some gluten-free pancakes. Kudos Hartford Hilton!

So you are probably wondering what these Women of Faith conferences involve. Basically, it is a day and a half of praise and worship music, relatable comedy, Bible-based messages and testimonials, a variety of inspirational speakers, Bible study and powerful art presentations. There is a variety every year and who the conference speakers are depends on the location of the event.

WOF stage in Hartford

The Women of Faith events are Bible based. Their statement of faith is as follows:

We believe …

  • The Bible to be the inspired, the only infallible, inerrant Word of God.
  • There is one God, eternally existent in three persons: Father, Son, and Holy Spirit.
  • He has revealed Himself in creation, history and Jesus Christ.
  • God’s creation of the world and humankind with humanity’s rebellion and subsequent depravity.
  • In the person and work of Jesus Christ, including His deity, His virgin birth, His sinless life, His true humanity, His miracles, His substitutionary death, His bodily resurrection, His ascension to heaven, and His personal return in power and glory.
  • That for salvation of the lost, sinful man, regeneration by the Holy Spirit is absolutely essential.
  • Salvation is by grace through faith in Christ as one’s Savior.
  • In the present ministry of the Holy Spirit by whose indwelling the Christian is enabled to live a godly life and to grow in the knowledge of God and Christian obedience.
  • In the resurrection of both the saved and the lost—the saved unto the resurrection of life and the lost unto the resurrection of damnation.
  • In the spiritual unity of believers in the Lord Jesus Christ and in the importance of church for worship, service and missions.

Just to give you some background, I attend church at a liberal UCC church and my aunt attends a Catholic church. My experience has been that when you refer to someone as a Christian, that people think we are all the same. I am here to tell you that we are not. This concerned me when I attended my first WOF event last year. If you look at the statement of faith above, to me, it represents more of a born-again Christian/evangelical Christian philosophy. I say this because even though I believe in most of what is stated above, I am not sure I believe in the whole damnation thing. Actually, I am certain that I do not. I also have some other beliefs and issues with the above that are too complex to get into now. I know a lot of people disagree with me and I am good with that. For me, my faith and religion is an ongoing process; one that often confuses me much more than I would like. But that is a possible topic for another day.

My point in bringing all this up is because I think that many people who are NOT born-again, think that this event is not for them. Trust me, it is. If you believe in Jesus Christ and the Bible, you will find a place here. You will find some type of inspiration.

The event that I attended had a variety of speakers including Lisa Harper, Liz Curtis Higgs, Sheila Walsh, Angie Smith, and Pastor Stovall Weems. These are absolutely amazing speakers; dynamic and inspiring. The topics discussed included experiences with the death of a child, mental illness, adoption, and being a "bad girl". I liked how each speaker wove their story into something relevant in the Bible. Pastor Weems gave a wonderful Bible study lecture and I have to say that over the course of the weekend, I learned a lot more about the Bible. Once again, Mark Lowry was there. I love this guy. He is a singer and comedian best known for writing the lyrics to the infamous Christmas song "Mary, Did You Know?" Anyone who knows me well knows how much I adore this song and it is a special part of my history with my husband. The guy is also hysterically funny. I don't know anyone who can get away with picking on all the different Christian denominations without being offensive.

Third Day doing their thing

The music included performances by the amazingly talented Cece Winans and one of my all time favorites, Third Day. Oh, how I love Third Day! I am a big fan of Contemporary Christian music and it is rare for us to get any of these Christian music groups to perform in New England; so that was a great experience. We got to see a performance by Destiny Africa, who are currently touring New England. These kids were amazing! There was also a praise and worship team that performed through the day and a half event. I was in awe of the singing talent presented throughout the event.

Besides the amazing music and speakers, there is so much more to the experience of a WOF event. Being in a packed arena of just women, Christian women at that, is an experience in itself. They even close down the men's room so we have more bathrooms! OK, seriously, there is much more to it than that. There was fellowship, community, and celebration of the strength of women. It was an arena filled with goodness and love, where you are accepted no matter who you are, how much money you make, or what mistakes you have made in the past. There are not too many places you can go to nowadays where that is the case.

Like last year, I left the conference discovering a thing or two about myself and my faith that I did not recognize before. This is always a good thing. I had been struggling with some of the not-so-great things going on in the world around me lately, as well as some of my personal relationships. This conference gave me a chance to step back, re-shift my focus towards God for a substantial period of time, and come back home a more peaceful person. I would say that is a pretty good weekend, Dayquil and all...

Jean and I on the floor by the stage. These were NOT our seats, but the ones we had were pretty good!

Disclaimer: I apologize for the lousy photos. I learned that I have become too dependent on my photographer husband and I forgot to bring  areal camera. these were taken with my iPhone; which died during the Third Day concert.

Tuesday, October 29, 2013

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.

Friday, October 18, 2013

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.

Monday, October 14, 2013

The Patriots, The Red Sox, and Me

Yes, I know I am supposed to be writing Disney blog entries right now, but sometimes I just have to go with whatever thoughts are running around in my head and today, it is about sports. Yes, you heard me correctly; sports! I realized as I was getting ready to write this that I don't think I have ever written a blog entry about organized professional sports or sporting events. What a shame.

In all honesty, I have not been to too many professional sporting events. Until this past year, I had been to maybe two Red Sox games when I was younger, a handful of minor league hockey games, and one Boston Bruins hockey game. I come from a family of New England Patriots fanatics, but I never cared too much about sporting events until sometime in my early thirties when I was trying to make my first marriage work by attempting to meet my ex-husband halfway. I thought that participating in some of his interests would help our relationship. That didn't work out obviously, but I did develop some passion for football and hockey; mostly in regards to the Patriots and the Bruins. I love the fast pace of hockey and overall, I like the game of football.

Over the next few years, I divorced and lived alone. My health was in terrible shape and I didn't have the resources or the good health to invest in attending professional sporting events, so oftentimes I would go with friends, or a date, to UMASS hockey games and Springfield Falcons games. I came to realize that I much preferred watching events live as opposed to watching them on television.

However, I started watching games more often on television when I started dating my husband, because he loves his Patriots, Bruins, and Celtics. He is not as much of a baseball fan but then again, neither was I. I love Sundays in the fall when we kick back in our sweats, watching the Patriots on television, and I find myself getting caught up in my local team's progress. Boston all the way!

My husband and I had the opportunity to bid on tickets at a charity auction back in March of this year. We very much wanted Patriots tickets as I had never been to an NFL game and he had never been to Gillette Stadium, and I have been desperately wanting to go for over seven years. There were also Red Sox tickets for auction and although I didn't like baseball, I love Boston and Fenway Park. So we bid on both. And we won both. Fenway and Gillette, here we come!

The Red Sox game was Memorial Day weekend, which was the weekend in between our wedding ceremony and our wedding reception. Not the best timing, but it was a welcome break from the craziness of it all. The seats were excellent; right at third base and close to the field. It had been about twenty-five years since I had been to a game and within ten minutes of being at the park, I was a Red Sox fan. It was such a different experience watching the game live as opposed to on television. I loved the history of Fenway itself, the energy of the crowd, everything. And, I found the game itself interesting. Luckily, I know the basics of how the game is played, which made it that much more enjoyable.

Fenway Park

It was an amazing game, one of the top two games of the season up until the writing of this blog. The Sox played the Cleveland Indians and were down five runs, I believe, in the ninth inning. People were actually leaving the park, thinking the game was over. Sure, it was disappointing that it looked like they were going to lose but I NEVER leave an event early: not a concert, sporting event, movie, nothing. I'm too cheap. I figure that if I pay good money for tickets, I am going to enjoy every single minute of it. Also, I have seen way too many sporting events on TV where miracles happen!

Sure enough, at their last time at bat, the Red Sox scored enough runs to win the game. People couldn't believe it and the crowd went wild. It was an adrenaline rush that I knew was unique to Fenway Park and the Boston Red Sox. I couldn't stop thinking or talking about it for days. At this point, the Sox are in the playoffs and had another amazing game last night, where they came from behind to win.

Enter October. We had four Patriots tickets and I was beyond excited to go to Gillette Stadium and watch the Patriots compete against the New Orleans Saints. We invited another couple, who we are good friends with, to join us, and we decided to make a day out of it. Rumor has it that the best way to enjoy a Patriots game is to tailgate before the game. So we borrowed a portable grill, loaded up the coolers, and we headed out to Foxboro, arriving four and a half hours before game time. By the way, I highly recommend doing that. The game was at 4:25pm and we arrived a little before noon. We hit minimal traffic, got a parking spot not too far from the walkway into the stadium, and had a great tailgating experience. We even tailgated after the game as it didn't look like we were getting out of there anytime soon. Might as well eat and sit in a comfy chair instead of being frustrated in a car, sitting in traffic!

The white van is ours. That is my husband sitting in the blue chair and our friends, Jane and Dave, standing up.

The tailgating was a blast. We had people parked next to us from New Brunswick, Canada. They had traveled down for a Sox game the night before and then drove to Foxboro for the Patriots game. They were very experienced tailgaters; their truck was even equipped with a portable potty for women only. No lie. They introduced us to grilled moose and reintroduced me to frozen margaritas. My husband and I walked around the parking lot at one point and it was amazing to see the tailgating setups people had. Large screen televisions, outdoor game setups, campfires, all kind of different unique cooking methods/appliances, tents, you name it. These people take their tailgating seriously! It was a lot of fun. We found people to be extremely helpful and generous with their food and drink. It was just one big party!

Tailgating. I loved all the American flags that we saw up in the parking lot.

Gillette Stadium is an experience in itself. Because we were having so much fun tailgating, we didn't get to spend as much time at Patriots Place as we would have liked. It is a large shopping complex right next to the stadium and it is a place that is open at times other than game days, so we will be going back.

My husband and I going into Gillette.

Our seats for this sporting event were pretty much as high as you can get in Gillette Stadium. There were only about fifteen rows behind us. It was us in the sky; at least that is how it felt. But I found that the view was great, even with being so high up. Plus the ten-fifteen minute walk up to our seats helped me work off that Canadian margarita. We were surrounded by mostly Patriots fans and some Saints fans. We found the Saints fans to be pretty friendly but I did overhear a few comments from the Patriots fans about the Saints fans that I thought was very uncalled for. A woman behind me started talking loudly about how she hates it when the other team's fans are sitting near her. I believe these were season tickets seats, so she probably always expects to be surrounded by Pats fans, but it was a bit rude. There was also an incident where at the end of the game, a Pats fan came flying over the rows of seats to get in the face of a Saints fan (a woman). I don't know if he touched her as I was turned towards my husband, but he was yelling and screaming in her face. He was so out of control that he bumped into me in the process and then of course, the woman got enraged with him screaming in her face and went chasing after him.

Dusk in Foxboro.

View from our seats.

Other view from our seats.

I am a big fan of cheering for the home team and friendly competition, but I am also a fan of not being a jerk. There was joking around between us and the Saints fans about our teams being better, how they were going to win, etc. but it was respectful. Not all people are like that and it's a shame. I think when you are the home team, you should act in a way that is representative of your home. For me, that means welcoming. But, that's what happens when people consume a lot of alcohol too.

None of this really mattered in terms of how much we enjoyed the game though. Like the Red Sox game, it was an incredible game. Like baseball, it also goes by much faster when you are at the game. We thought we were going to lose at the two minute mark after the Saints scored. Again, people started to empty out of the stadium. Fools. This is Tom Brady (quarterback) that we are talking about and if anyone can pull off a Hail Mary, it's him. Sure enough, him and the team did an offensive drive that happened so quickly (there were no time outs left and the clock was ticking) that if you blinked, you missed something. With five seconds left in the game, Tom Brady threw a touchdown pass that won the game. It was simply amazing. People were going nuts. Friends and family were texting and calling me to make sure that we hadn't left the game early. It was a great first NFL game to see, no doubt about it.

My husband and I. My mom, a breast cancer survivor, made me this pink awareness scarf for the game. October is breast cancer awareness month and the Patriots wear pink on their uniform.

So I am hooked on live professional sporting events. I do wish it didn't cost so much money to go. If it didn't, I would be a Patriots season's ticket holder for sure. But it is what it is. I was grateful for the opportunity to go, to spend quality, fun time with my husband and friends, and to be a part of something bigger than myself. So until next time, thank you Boston!

Saturday, October 12, 2013

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

Tuesday, October 8, 2013

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.