Wednesday, April 30, 2014

2014 Sjögren's Syndrome National Patient Conference: Part One


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


Monday, April 28, 2014

My Deepest Thanks


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!

Wednesday, April 23, 2014

Coming Full Circle


In 2010, I had the great fortune of attending the Sjögren's Syndrome National Patient Conference in Hartford, CT. As I have written about in my book, Tales From the Dry Side, attending that conference was a pivotal day in my journey with this illness. When I attended the conference, I didn't even have a diagnosis yet, but somehow, God led me in the direction of that gathering and it was there that I met my current rheumatologist, Dr. Parke. It was also there that Dr. Parke agreed to see me for a second opinion. Well, it was a fifth opinion, but it didn't matter because she was the one who finally diagnosed me with Sjögren's syndrome.


During the summer of 2011, I received my diagnosis and by November, I had decided that I wanted to write a book that brought together many different patient stories in one place about this often misdiagnosed and misunderstood disease. It was a full two years from the time I started the project until its publication in November 2013. Those two years were filled with a lot of hard work, learning, disappointments, and doubt. But the end result has been this incredible resource for patients, families, friends, and medical professionals. Some patients, who have written to me, have said that Tales from the Dry Side is a beacon of hope. Family members have told me that they finally "get it." And, medical professionals have written that they had no idea how complex this illness could be. Thanks to my twelve fellow book contributors, we have a made a difference in this world.


In fourteen hours, I will be leaving for the airport to fly to Chicago for this year's National Patient Conference. I will be speaking on a patient panel and doing a book signing. I will have the opportunity to meet in person, for the first time, one of my fellow book contributors, several blog followers/friends, and people from the SSF organization that I have known for so long via e-mail and phone calls. I have no words to adequately describe the anticipation and joy I feel over this opportunity.


I will also have the opportunity to hear my own rheumatologist speak on a physician panel; four years after I initially heard her speak in 2010. How different my journey has turned out compared to when I first met her in Hartford, CT. I have gone from a scared, lost, and very sick patient, to one who knows more about her illness than most in the medical community. One who can utilize her challenges and difficult times to help others. One who has learned how to cope (on most days!) with the devastating effects of Sjögren's syndrome. I don't say this out of a sense of pride, but rather to show that it is possible to not only survive, but thrive, with this illness. No matter how sick you are or how discouraged you may get, you have something valuable to offer to this world.


I have been doing a lot of thinking this week about this coming full circle thing. I have not gotten here alone. Yes, I am going to the National Patient Conference to represent Tales From the Dry Side, but I am representing so much more than one book. I am representing all my fellow book contributors, and every single person I have ever met with this terrible illness. Behind this book is the financial support of over one hundred people who contributed to the book's Kickstarter campaign last summer. The book is backed by the countless friends and blog readers who have emotionally supported me on this journey.


I am able to get on a plane in fourteen hours for this journey because I am blessed by the grace of God and by an incredible family and circle of friends that love and support me and this book every single day. From the bottom of my heart, thank you. Thank you for believing in me and for always supporting my writing. Mostly, thank you for just loving me.

Monday, April 21, 2014

Reclaiming Acupuncture


A couple of years ago, I went to see an acupuncturist for the first time to see if he could help manage some of my autoimmune symptoms. It was such a good experience for me, that I wrote blog entries about it and continued with my treatments for about a year. It could have been longer, I forget...


However, at some point, I stopped going because I felt that I had reached an end point in terms of my improvement, and because I had started seeing a massage therapist who did trigger point massage therapy. At that time in my illness, the trigger point therapy seemed to be helping more and both modalities of treatment were out-of-pocket and not covered by insurance. I find this fact extremely disturbing in itself because out of ever single thing I have ever tried to manage my autoimmune symptoms, acupuncture and massage therapy were two of the most effective treatments.


Then eventually, I ventured into the land of integrative medicine and while some of it is covered by my health insurance, a lot of it isn't and that adds up after a while. So I put acupuncture on the back burner for a period of about two years, give or take.


Recently, I weaned off prednisone and started to have some nasty symptoms: fatigue like I have not experienced in well over a year, joint pain, constant menstruation (yes, that was fun), mood swings to go along with the messed up menstrual cycle, and overall just feeling like hell. It took all my energy to shower, get my daily basic tasks accomplished, and to get through the day without crying. And I mean a LOT of crying; for no reason. It felt like I was premenstrual ALL THE TIME! The days where I had to work, I would rest for a few days before and after each day I worked and I did nothing but get to work and my medical appointments.


I first thought this was all autoimmune related, but the menstrual abnormalities and mood swings made me think otherwise...like peri-menopausal otherwise. I also thought maybe it was from coming off the prednisone. I didn't think I was under a lot of stress, because I was very happy with my life, but when I objectively looked at what was going on in my life: publication of my first book, the new job, the upheaval in my church life, some personal issues, an upcoming trip, training for a recent road race, I did have a lot of stressors in my life. Most of them were GOOD stressors, but stressors all the same.


I didn't even know what to do about all this as I didn't know the exact cause. I was certain that the autoimmune stuff played a role, but I didn't think it was the sole culprit. I happened to have a scheduled appointment with my integrative medicine practitioner and I talked to her about it. Part of the problem was that I had stopped my low-dose naltrexone (LDN) because it was keeping me awake at night, which was making things worse. For the autoimmune symptoms we decided to go back on the LDN, but take it in the morning, and add back my boswellia supplement for the autoimmune symptoms as well.


She then told me she suspected I may have adrenal gland exhaustion (also called adrenal gland fatigue) from a combination of the prednisone and stress. It seemed to make sense to me. She prescribed a few specific supplements (Adreset and Adrenal) for adrenal gland support and also something to help regulate my adrenals, and subsequent cortisol levels, for sleep. I came home and researched adrenal fatigue and it was like seeing the past few weeks right in front of my eyes!


I was getting nervous because I was due to fly to Chicago for the SSF National Patient Conference in a week. Our plan was to give this treatment plan two weeks and if I was not getting better, or worse, I would have to go back on a small dose of prednisone for a while. Well, two weeks wasn't going to help me for the trip if I didn't get better. Then, it hit me on the drive home: why wasn't I back at acupuncture?


So I contacted my friends at The People's Acupuncture Clinic in Amherst, MA, which is where I used to go, and made three appointments  for the next week until I left for Chicago.


Best decision ever.


I went to my first appointment a wreck. I was so exhausted and in so much pain, I just wanted to crawl into bed and sleep for six months. Within a few minutes of the practitioner inserting the acupuncture needles, I began to feel a sense of calm and relaxation flowing through my body.

That morning, I could not even open my right hand all the way because of the joint pain and swelling. Four hours after my treatment, my hand was fine and I had NO JOINT PAIN.


None.
Swear on a stack of bibles.


By that evening, I was still very tired, but actually managed to go out for a bite to eat with some friends after church.

By the next morning, I had finally stopped menstruating and didn't feel as moody.

Twenty-four hours later, I went for a run with my husband. It wasn't easy, but it was doable.


It has now been six days since I started my adrenal gland and autoimmune supplements and today, I had my second acupuncture treatment since starting three days ago. And, I am better. The mood swings are completely gone, my joint pain is significantly improved, I am sleeping better, my anxiety level is down, and overall, it feels like my body is moving its way back to a more even keel. I am certain the improvement  is due to the acupuncture and the integrative medicine treatment plan. I have also worked on other ways to treat the adrenal fatigue such as getting a lot of rest, no matter what is going on, and overall, just taking better care of myself.


I definitely am not in as good a place as I would like to be in, or was in, before this all blew up on me, but I am well enough to know that in 2 1/2 days, I will be able to make that flight to Chicago. The first thing I will do the day after I get back?


Go to my acupuncture appointment....