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Showing posts from April, 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…

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 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…

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 …

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, …