Category: Tales From The Dry Side (Page 1 of 3)

There are moments and events in life that are so profound that we cannot help but be forever affected by them. This conference was one of those for me. I had written in my last post about the logistical aspects of the conference and now, I finally get to write about the trip itself and how the overall experience was.

I can sum it up in one word: incredible.

OK, that doesn’t even really sum it up, but I thought I would try!

As I mentioned in the previous entry, my husband and I arrived in Chicago a day early so that we could try and get some sightseeing in, as neither one of us had ever been to Chicago before. So we flew in Thursday morning, unpacked, and immediately made our way to the subway stop by the hotel to head into downtown Chicago. We spent some time in Millenium Park as we made our way towards Navy Pier, which I was very excited about. We enjoyed it there, although I think it would have been better if we had not gone during off-season, as a lot of things were closed. But, we rode the giant Ferris wheel, which gave us amazing views,  and then did the one thing I have been talking about since I found out we were going to Chicago…

I saw one of the Great Lakes! As a New England girl who is an ocean and water lover at heart, this was a huge deal for me. Despite the less than stellar weather, we got to take in the views of Lake Michigan, as well as the lighthouse that is situated there. If it was warmer, I could have sat there all day!

Me at Lake Michigan!

We were going to try and eat dinner downtown and go to one of the observation towers, but we had been awake since 4:30am, had changed time zones, and we still had two full conference days ahead of us. So, we headed back to the hotel, via subway, and ate dinner there. Sometimes that’s just the breaks when you have a chronic illness; concessions have to be made and you have to ration out your energy.

The next morning, I didn’t have to be downstairs at the exhibit hall until about 11:30am, which was good. It gave me time to pull myself together because honestly, I was a wreck. You have to understand that I had been working on Tales From the Dry Side since 2011. I had been communicating with people from the SSF, book contributors, and blog followers for YEARS, but had never met anyone in person. Besides meeting all these people and friends of mine for the first time, I was doing a book signing AND speaking that day as a panelist. I was shaking like a leaf by the time I got downstairs. It felt like this was the culmination of all my hard work and dedication to this project over the past several years.

We went downstairs, met some of the staff from the SSF first, and then my husband and I set up our table. The table was right next to the book sale table, where all the SSF books were being sold. I have to say, I am glad I put as much effort into creating the book table as I did. Besides the book sale table, we were the only non-pharmaceutical table in the exhibit hall.

At 12:30pm, the exhibit area was opened and from there, my weekend was non-stop. I was shocked over how many people came to our table, not just to have their copy of the book signed, but to talk, ask me questions, and share their own stories. I have been doing a lot of this online this whole time; communicating with other patients and sharing stories. But, it was MUCH different doing so in person.

Everything is different in person when you are meeting people face-to-face for the first time. It was so hard for me not to cry when I finally got to meet these online friends and book contributors that I have known for years. These strong and amazing women that share their journeys with me every day, or every week. Really, words can not do it justice. You can tell so much from a person by communicating with them on Facebook, or via e-mail, several times a week, but it is a real treat to get to hear their voice, and notice their mannerisms! A bunch of us went to dinner on Saturday night and it was so funny because they all knew me, and some of them knew each other, but they didn’t ALL know each other. Despite this, we got along famously and it was an evening that I know I will never forget. Imagine sitting at a table with four other women (or people) who have your same exact weird, unheard of, illness. But, you know them already, in a way. And, they all get it! That’s a level of comfort that can be hard to find in the world.

The two women to the left are Tales from the Dry Side contributors, Sandy and Sandi. The women on the right are long-time blog followers, Vicki and Sarah.

The entire two day conference was non-stop. If I wasn’t in a session with all the other attendees, I was out at the book table. It was a little strange because people knew who I was (from the table and the speech I gave as a panelist). People would stop to talk to me in the bathroom, the lobby, even on the shuttle bus back to the airport on Sunday. And, it was great. I felt all this knowledge I had from being a Sjögren’s patient all these years was doing some good.

One of the biggest highlights of the weekend for me was on Friday when I spoke on a patient panel about my experience with the illness and about why I wrote the book. I am NOT a good public speaker, although in hindsight, I am a much better one than I ever gave myself credit for. It was needing to get past the fear and anxiety of the task itself. My husband had suggested that I write out some note cards to help prompt myself, but I decided to wing it…the whole thing. I thought that if I thought about it too much, I wouldn’t be an effective speaker. I also have a bad habit of looking down, and not up, when I am nervous and speaking in front of a crowd. Now I would HAVE to look up! After all, it was my story…I knew it by heart.

Two blog followers/friends were also asked to speak on the patient panel, which was awesome! This is Heidi.

And this is Lara!

I had about ten minutes to speak and it was truly ten of the most liberating moments of my life. It was me at a podium with about 450-500 people in front of me in a very large ballroom. I looked out at the crowd, and I just spoke. It was very important for me to not only tell my story and speak about the book, but to let people know that they are not alone, that they have to fight to get their medical needs met, and that they can never lose hope. And, that was what I did. Looking back, it is still hard for me to believe that that was me who spoke with such confidence and conviction. Sometimes, we never know what we are truly capable of, until we do it.

Me trying to make a point.

After that panel session, I got inundated at the book signing table, but one woman in particular stood out to me. She was waiting to speak with me and I noticed she was crying, a lot. At first I thought that she was sick or something and then when I went around to the front of the table to see if she was OK, she hugged me and told me she was crying because of how much I inspired her when I spoke. And that I gave her hope.

That happened frequently at the conference; people telling me that either Tales From the Dry Side, my speech, or both, affected them in some profound way. They could identify with the stories from my fellow authors and they found what they were looking for and that was solace and hope. I had a woman tell me that after hearing my story, she was now going to be an Awareness Ambassador for the SSF because she figures that if I could go through what I have been through and then write this book, then she could do her little part for the cause. I heard other spouses telling my husband what a great support he is to me (that still makes me cry when I tell people about it). Finally, him getting the recognition he deserves because let me tell you, it is not easy being the spouse of a person with such a difficult illness.

I was so deeply touch by hearing other’s stories. They actually inspired ME. I had a very tough time physically getting through the weekend and hearing how some people struggle even more than I do, and yet still keep a positive attitude, helped fuel me through the whole event.

I guess I would seem up this experience like this: I felt that the entire conference, in some way, validated my struggles. I told my husband this, and I don’t think he agrees with me on it. I am not a believer that God made me sick just so that I could help other people. Actually, I don’t even believe that God made me sick at all. But having all these experiences with people at the conference confirmed my belief that all the pain, sadness, and struggles I have had with Sjögren’s syndrome have served a purpose.

Every negative experience I had with a doctor.
Every misdiagnosis.
Every painful procedure.
Every time a person said to me “you don’t look sick.”
Every loss I suffered due to this illness whether it be my career or home.

It has served a greater purpose in that I have been able to use it and turn it into something that gives other human beings information, inspiration, and hope. Not everyone gets that sacred opportunity so I thank each and every one of you who I spoke with and gave ME as much back as I have given you.

Be well.

From the airplane on the way home.

I had been preparing for this year’s SSF National Patient Conference since last summer. I had been invited to speak on a patient panel and to do a book signing for Tales From the Dry Side, both of which I had been looking forward to. I had never done anything like this previously, and it promised to be quite an adventure.

My husband and I flew out to Chicago on April 24th so that we would have the 24th to do some sightseeing. The conference was being help April 25th and 26th, and then we would be flying home very early of the 27th. In this entry, I am going to focus on some of the technical aspects of the conference. I am doing this because I have come across quite a few people online who have wondered what the conferences are like and if it is worth the money for them to go. It can be a costly venture, especially if you need to fly in and because for many of us, resources are limited. I thought this entry might be helpful.

This year’s conference was held at the Hyatt Regency O’Hare in Rosemont, Illinois (Chicago). I thought it was a great place to have a conference for many reasons. For one, the subway station was less than ten minutes around the corner and gave you direct access into downtown Chicago. This is what my husband and I did on our first day there and it saved us a fortune in cab fares. It was our first time in Chicago and we were not disappointed. We spent many hours walking the streets downtown and ended up visiting Millenium Park and Navy Pier.

Beautiful Chicago!

I found the Hyatt staff, rooms, and conference area to be simply outstanding. The first night we were there, we came back from downtown before supper because I was exhausted and I still had two full days ahead of me. We ate at the hotel restaurant where I ordered GRASS-FED (yay!) hamburg and my entire meal was gluten-free/Paleo. The healthy food choices at this hotel amazed me. I also got a gluten/dairy-free meal during the conference for Friday night and Saturday lunch, both of which were delicious.

Tales from the Dry Side on the big screen!

I was also impressed with the organization of the SSF in setting up and orchestrating the conference. The following is an outline of the sessions that took place during the conference:

* Overview of Sjögren’s Syndrome: This was a very thorough history of the illness, as well as the diagnostic testing and available treatments. Little dry at times, but I think that was partly because I was well versed on all the information. Definitely a good primer though for those newly diagnosed.

* Pulmonary Issues and Sjögren’s: This lecture covered EVERY aspect of pulmonary issues in Sjögren’s. It was interesting and I think most valuable as many people go around for years with Sjögren’s related pulmonary issues and are dismissed or never treated appropriately.

*Gastrointestional Issues and Sjögren’s: Another excellent lecture. The highlight for me during this lecture was to see in print in my conference manual, and to hear Dr. Nichols speak about, esophageal motility disorders in Sjögren’s. Esophageal motility disorders can happen in up to 1/3 of us and they are related to the illness, despite that I was told by some doctors that mine was not. I am going to photocopy these pages from my manual and mail them to my doctor.

* How I Stood Up For Sjögren’s: Of course this was my favorite since I was a panelist! But all joking aside, I loved hearing the other panelist stories and I think that it opened up the door for other conference attendees to approach us and have discussions after the session. We basically told our Sjögren’s story and then talked about what we did to promote awareness; i.e. for me, publishing a book.

* Banquet Award Dinner: This was a dinner in which awards were presented by the SSF for numerous accomplishments. My favorite award was the one my rheumatologist, Dr. Ann Parke, received which was the Healthcare Leadership Award. After the awards, we heard the keynote speaker, Mary McDonough, who has Sjögren’s and lupus, give her speech She is an actress who played Erin Walton on The Waltons. I am about to start reading her book!

* Clinical Practice Guidelines Update: I will be honest. This was first thing in the morning and I thought it would be boring, My mistake; it was really good. Three different rheumatologists sat on a panel and talked about the three different clinical work groups they are heading. Each doctor talked about the different practice guidelines for systemic illness, oral illness, and ocular illness associated with Sjögren’s. They talked about different management algorithms and future investigations for treatment. Definitely information that we, as patients, can bring back to our doctors.

*Sjögren’s Walkabout: This was one of several Walkabouts that takes place in the country each year. Despite some less than stellar weather that weekend, it was perfect our for our Walkabout. It was nice to walk in solidarity with my husband and friends.Thank you again to everyone who donated to our funding campaign!

* The Next Chapter For Sjögren’s Patients: This session discussed what is in the future for the SSF and the illness. It was brief. OK, truth be told, it was brief for me because I was still out in the exhibit area signing books and didn’t make it back in time for the entire session.

* Overlapping Major Connective Tissues Diseases: There was a lot of information here. Because I knew I had an autoimmune illness long before I was diagnosed with one, I knew most of this information, but that being said, it was extremely valuable for patients. A lot of discussion about lupus, scleroderma,, and rheumatoid arthritis.

* Nutrition, Wellness, and Autoimmune Disease: I was VERY happy to see this included in the program. As you all know, I am a big advocate of nutrition and wellness for healing and it was good to see something included in the conference that was not based strictly on a medical model. If I had my way, next year’s conference will include more of this!

* What is in the Clinical Trial Pipeline?: I found this interesting. Different medication therapies were described as well as how clinical trials work. Dr. Ford was an excellent speaker and explained things in relatable terms.

As you can see, it was quite a busy two days! In between sessions and at the beginning of the day, and end of the day, the exhibit hall was open which is where the Tales From the Dry Side table was, along with an SSF book table and numerous vendors. I am in the process right now of trying the different products so I can review some of them online and I have to say, I am on to a few great ones I think!

It was truly a great conference and I am looking forward to writing the next installment this week which focuses on my personal experience at the conference. Stay tuned! Also, if you would like to view some photos that my husband took during our adventure, head on over to the Thoughts and Ramblings Facebook page where some are posted….

Busy signing books!

Photos: Courtesy of Chuck Myers at  myerscreativephotography.com

Well, I have been home from the Sjögren’s Syndrome Foundation National Patient Conference for about twenty-four hours, fifteen of which I have spent sleeping…no lie! There are so many experiences that happened in those two days that I want to write about and there is a TON of Sjögrens related information I learned that I wish to pass on to you, my readers. But, I am going to take this in small steps because first, there is so much to write about, so I am going to do it in several different blogs so as not to overwhelm you. And second, I need to spend some time really taking care of myself physically. especially because I have several days scheduled at work in the next two weeks…and a birthday coming up!

I hope this does not sound redundant, but this blog entry is designed to thank many people who supported me through this conference endeavor. I did some of this already on the Thoughts and Ramblings Facebook page, but I know not everyone uses Facebook or Twitter. If you do use Facebook though, you can come be a part of the page by clicking on the Facebook link on the right side of this page. Or just type Thoughts and Ramblings on Life, Love, and Health in your Facebook search box.

The Sjögren’s Syndrome Foundation has been an instrumental part of the success of Tales From the Dry Side during their 2014 conference this past weekend. They (specifically Steven Taylor, CEO) gave me the opportunity to have a book signing table and invited me to speak on a panel the first day of the conference. It was the first time I have been able to share my story out loud to a group of people like that-an experience I will never forget.

From the moment I stepped into the exhibit hall, I was treated with kindness and respect. The SSF staff on site for the convention went out of their way to make me feel comfortable and to ensure that everything was going smoothly for me. Thank you especially to Kathy Ivory, Ben Basloe, Elizabeth Troccio, Sheriese DeFruscio and Michele Champigny for making me feel like a part of the SSF family.

I owe a huge debt of gratitude to two of my fellow story contributors, Sandra Larsen and Sandra Loy, who attended the conference and spent many hours signing books and speaking with conference attendees. I am so blessed to call them friends.

I honestly do not know if I physically would have gotten through this trip without my husband, Chuck. He made sure I had everything I needed and kept me upright when all I wanted to do was sleep. Any of you who follow this blog regularly know how constant his support is. This weekend was no exception.

Thanks to my awesome aunt and uncle, Jean and Paul, for surprising me with a beautiful floral arrangement in my hotel room. It made a good book signing table absolutely beautiful! Thank you to my family and friends for all their support and for being so excited for me.

Last, but not least, thank you to all the conference attendees who visited the Tales From the Dry Side table and took the time to share their stories. And thank you to their family members, partners, friends, and spouses, who were truly the best examples of what it is like to love someone, no matter how rocky the road gets. All of your enthusiasm and strength as Sjögren’s patients gave ME the strength to keep going hour after hours for several days. Thank you for buying the book. I know for many of you, resources are scarce and I appreciate you having faith in me and this book.

I am very excited to share my conference experiences with you all over the next few weeks. Although I didn’t have even a minute to explore the vendor tables, my husband graciously did so for me and snagged me samples of several different new products which I will be trying and then doing reviews on so that maybe these products can be of some use to you all.

For those of you who attended, get some rest and remember…you are your own best advocate. Never stop fighting for yourself!

I have been getting a lot of messages lately inquiring about where to purchase Tales From the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjögren’s Syndrome. Not everyone likes to shop online or has an Amazon account and I figure this is a good opportunity to be passionate about the retail places that have been so supportive in carrying the book.

1. The Sjögren’s Syndrome Foundation: I mention the Foundation first for a reason. They make a profit on every book sold through their bookstore or at their conferences, whether you are a member or not. However if you are a member, you can purchase the book for an unbelievably reasonable price of just $10. And because I have Sjögren’s, monies made by them to go towards research, etc. is very important to me.

2. Broadside Bookshop: This great independent bookstore is in Northampton, Massachusetts. I have a passion for local bookstores and this one in particular is a favorite of mine. Even if you don’t live in the Northampton area, it is worth the drive. Well, within reason that is! They have a wonderful selection and their location in downtown makes for a great afternoon.

3. Booklink Booksellers: Another great independent bookstore also located in downtown Northampton where you can find Tales From the Dry Side featured in the local authors section at the front of the store.

4. Barnes and Noble: You can find Tales From the Dry Side in their online store, but I recently found out that the stores are going to carry it at well. This is dependent on if the buyer for your particular store has purchased it for the shelves so if you do not see it, ask for it. You can also download it for your Nook via their website.

5. Amazon: What I like about Amazon is that they offer a Kindle version of the book and that may be more feasible for people who have economic hardship. I have been quite surprised by the Kindle sales.

6. Outskirts Press: Outskirts Press is my publisher. They offer a great deal. if for some reason, you want to order 10 or more copies of the book, you are discounted 50% on each book. That’s a whole lot of savings!