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Showing posts from August, 2013

No Answers

As I have mentioned on this blog and on social media, I have been struggling with issues with my bladder on and off since last year but significantly since the second week in June of this year. Pelvic pain, especially when I void, as well as frequency and urgency. I have to say out that of all the pain I have endured in the past few years, this has been some of the worst.


As I also previously mentioned in my last entry I think, I am seeing a urologist at Lahey Clinic. I saw him the first time two weeks ago and he thought I have Interstitial Cystitis (IC), a very painful bladder disorder that can be related to Sjögren's. I was then back in his office last week seeing a nurse practitioner on an urgent basis because my symptoms were so severe. She immediately got me scheduled for a cystoscopy with hydrodistension yesterday to try and confirm the diagnosis and treat the symptoms with the hydrodistension.


So I went in yesterday for day surgery because they do this under general anesth…

Authentic Thoughts And Ramblings

I am trying to be better about how frequently I blog. Typically, I put in a lot of time and thought into each blog entry rather than just writing down whatever pops into my head at the moment. It is not unusual for one blog entry to take me several hours to write and edit before I post it. The problem with this is that when things get busy for me like with medical appointments, trying to publish a book and getting married, I don't have a time block of several hours to write. What complicates this issue even more is if I need to take pain medications, like I have recently, I can't think straight enough to write at all.


So I am going to try and be more spontaneous with my writing. Not every piece I write needs to be this incredibly thought provoking piece of writing. Oftentimes thoughts and ideas just pop into my head that I would like to jot down. I usually end up doing so on my Facebook page and then I have this annoying and long status update.


My thoughts today are all over…

The Vulnerability Of Being A Patient

This is a health related blog entry that is not just about Sjögren's. I say this because I know that sometimes non-Sjögren's people read the blog title or the first few sentences and decide they are not interested in the subject. I know this because well, people have told me. And for the record, I think that is awesome because I love honesty and because I frequently do the same thing when reading blogs. But this one is important because at some point in our lives most everyone, even my extremely healthy husband, has to see a doctor in this country.


We all know what the state of health care is like in this country and to be honest, I have no desire to get all editorial about that. But because I am constantly immersed in the health care system, people ask my opinion a lot and I read stories and scenarios online about other patients who find themselves in situations that they think are unique to them. So I am going to share with you all a recent scenario that happened to me and …

Tales From The Dry Side Publishing Process Has Begun!

All kinds of exciting things are happening around here. I started the publishing process for Tales From the Dry Side with Outskirts Press this week and we are full steam ahead. I have been working with my author representative, Terri, and she anticipates the book will be published in seven-ten weeks. This week I submitted the manuscript, cover photo, author photo, and wrote the back cover text. The process has been going well and Terri has spent a lot of time with me so far on the phone and via e-mail educating me on the specifics of self-publishing. I enjoy the flexibility that this publishing company is giving me in regards to every detail of the book, including the entire interior design, right down to the font type and size. Over the next few days I will be working on choosing the specifics of the interior book design.



The manuscript was read this past week by a manuscript review team. They checked the content for numerous things such as any potential legal issues and they approv…