Friday, June 28, 2013

Tales From the Dry Side: New Book About Sjögren's Syndrome


As many of you know, I have been working on a book called Tales From The Dry Side: The Personal Stories Behind The Autoimmune Illness Sjögren's Syndrome. The project started in December 2011 because as I was networking and meeting other Sjögren's patients, it became strikingly clear to me that there was a need for our stories to be told. There were so many similarities in our stories, especially in regards to how long it took most of us to be diagnosed. Some of us still do not have a "formal" diagnosis.


I went through a process of seeking out Sjögren's patients via in person support groups, a list serve system, through my blog, and via Facebook. Including myself, there are thirteen of us who have contributed to this book. The stories are amazing and compelling. I spent the better part of a year coming up with a structure for the book and editing the contributor's stories. Keep in mind, every single one of these contributors has an extensive autoimmune illness, sometimes more than one illness, and yet they spent countless hours writing these stories for this book.


Steven Taylor, CEO of The Sjögren's Syndrome Foundation (SSF) has written the foreword to the book and has agreed to support the book by promoting it via the SSF on their website and at conferences. His agreement to do this will be instrumental in getting this book into the hands of the people who need it most; not just patients, but caregivers and medical professionals as well.


The book is complete and has been for some time. Since October 2012 I have been sending letters and contacting literary agents to represent the book. I have attended a writing conference and met in person with a literary agent. After contacting well over twenty-five agents, I have gotten nowhere. I know this is common in the traditional publishing world however as a Sjögren's patient with my own limited physical resources, this has been difficult. Also, I feel strongly that this book MUST get into the hands of those who need it ASAP and the traditional publishing process is not conducive to that.


I have made a decision to self publish the book. I have spent countless hours researching the process and different companies. I have poured over self published books to see what I want Tales From The Dry Side to look like. I have made a decision to self publish with Outskirts Press as they produce a quality product and have an excellent reputation in the publishing world. I will be honest, the process seems daunting to me but as you all know, I am highly motivated and this project will succeed.


Self publishing costs money upfront. How much money depends on the quality of product you want and on the services you require. I have a husband who works but I bring in a disability income and my medical expenses are a bit ridiculous. Therefore I am looking for funding to self publish the book.


I have decided to do this through a funding platform called Kickstarter.com. It is a for profit company that is designed to help people finance a variety of creative projects, including books. You can learn more about them by clicking the link above. I am in the process of setting up the project on their website and it is almost done. I also had to set up a business account through Amazon in order to obtain the funds and it will be a few more days until that process is complete. I have learned a lot in the past month!


Kickstarter is not just a site where I ask for money to fund the book. It is a lot of work on my part. There are reward incentives that I offer based on the donation level. Rewards vary from a free copy of the book to my services as a speaker at your event. It makes the process of fundraising interesting and rewarding...literally!


I am looking to raise $7000. OK, listen up because this is important!

I have to raise the entire $7000 in about 30 days or I get NOTHING...NADA...ZILCH!

If I raise $6,950, no book! This is part of Kickstarter's policy and I have no control over it. They have found that projects are more successful with this condition. Personally, it scares the crap out of me! The Kickstarter page for the book should be up within a week and I will be posting the link everywhere so that people can read more about the book and the funding.


So this is what I am asking for, besides money. I am asking that you share this blog post with anyone and everyone. I am also asking that you be on the look out for the Kickstarter link when I post it and then share THAT with everyone you know. Getting the word out about this will be critical to the success of funding the project. It is especially important that those of you who have a Sjögren's or autoimmune related blog and/or website share this information. If I raise the $7000, the book will be published...period.


Thank you all again for your continued support.

Much love!

Thursday, June 27, 2013

Nursing, Writing, and Dreaming

Although I didn't write a formal blog entry about this yet, I am trying, and I use the term "trying" very literally, to take a break from social media for a while; specifically Facebook. The reasons are varied and I will probably save the explanations for another post because it is 11am and I have things I want to get done today; especially in reference to my book Tales From the Dry Side that I am desperately trying to get published.


There has been a lot going on lately, both in my mind and with my health (shocking, I know!) and the break from Facebook has been very good for me. I have been checking a few things on there such as my inbox messages but overall my Facebook use has decreased about 75%. That is a lot! I know I will go back to it regularly at some point but meanwhile, I do sometimes miss posting my thoughts and ramblings as my status updates. Why? Because I am a writer. However I also have this blog. Even though my original intention for the blog was not to use it as a daily record of my activities, i.e. journal, I think there may be a place for it to serve as a function for that at times. Don't worry, I will not be posting the most mundane details of my life on an hourly basis! To be honest, there is not much about my life that is mundane anyways. There is always something going on, either good or bad.


So in today's entry I want to share something profound with you that I read last night. Because as much as I say I am a writer, it is becoming more and more clear to me that I am also a nurse. I have been reading a fantastic, and self published, book called Leave No Nurse Behind: Nurses Working With Disabilities by Donna Carol Maheady, ARNP, EdD. I originally purchased this book because I have been doing a lot of thinking lately about going back to work and how I could possibly manage that, if at all. I have also been thinking about the possibility of going back to graduate school if I could manage an online graduate program while dealing with this lousy autoimmune illness. For the past few years, both concepts have felt completely out of my reach. But the tides have changed a bit over the past few months and this has left me doing a lot of wondering.


First off, I love this book because I am trying to get my own book published and Ms. Maheady's book is self published and it is set up in striking similarity to mine. It is a collection of stories about disabled nurses who have found a way to start and/or maintain a nursing career. Their stories are courageous and inspiring to say the least. Similar to the Sjogren's sufferers stories in Tales From the Dry Side. This is the third self published book I have read recently and I think I am convinced enough by the final product to finally pursue this avenue for my book; provided I can come up with the funding.


Anyways, the other reason I am so in love with this book is because of what it does. It speaks to nurses like me who spent years and years building a nursing career, only to one day have it all taken away in an instant. Ms. Maheady's book, and the stories contained within it, helps me to see that resuming a nursing career someday may not be completely out of my reach. Yes, it will require hard work, courage, balance, and dedication to manage the everyday perils of living with such a sometimes debilitating chronic illness while being in the workplace. But having said illness does not automatically disqualify me from that dream. And if anyone can dream, and accomplish, it certainly is me.


Even the dream of someday being an Integrative Medicine Nurse Practitioner and Writer.


As so eloquently stated by one of her contributors, "When you live with a chronic disease day in and day out, you become familiar with what is changing in your body and in your life. You can share and educate your patients and coworkers just by showing up for work and setting a positive example. Over time, people learn to see you in a different light-not as a person with a chronic illness, but a person who takes life and runs with it into their dreams. I am that person. I go to work every day; and by going to work, I'm contributing to the profession of nursing and to the reputation of all people with disabilities. I'm a daily example that if you decide to take charge of your life and health, you can do anything, no matter what type of disability you may have." (Maheady, 2006, p. 83).


I love everything about this quote. Notice that it does not say that we will not have bad days and have to call in sick. Notice that it does not imply that perhaps if we do go back to work, it will all work out as happy as puppies and rainbows. It doesn't point out that perhaps we will have to again leave the workforce and go back on disability. But rather, it talks about the positive results that can come from having a disability and being a nurse in the workplace. It talks about hope. It talks about possibilities.


For now, that's enough for me.

Sunday, June 23, 2013

Embracing Prednisone



I am back on prednisone. There, I said it. Anyone who follows my blog knows how I feel about prednisone. It is a miracle drug and a drug from hell all mixed into one small white pill. Over the past four years or so, I have been on it more than I have been off it. However since I started seeing an integrative medicine practitioner last November, I was able to wean off prednisone at the end of January and have been off it ever since. Folks, that is the longest I have ever been off of it; FIVE whole months!


Now, I  saw my rheumatologist in April which was about a month before my wedding. Because of the increase in joint pain, she wanted me back on 10mg of prednisone or Arava. It was my choice based on the side effects. I gave it a lot of thought, gave it another week, and decided to hold off. And no, I never called my doctor. I am not an advocate of going against doctor advice so please don't leave me comments saying I give bad advice. People have sent me those types of comments and e-mails. I did what I thought was best for me. Maybe I will be right. Maybe I will be wrong. I followed up with the integrative medicine doctor, I clamped down on my diet, and my pain got better. I made it through both days of my wedding very successfully.


After the wedding, it looked to others I was doing well and I kind of was, to a point. But I was having issues. I think what was really happening was because I was feeling better, I was more active which then caused my symptoms to flare. Also mentally, I am coping MUCH better with my symptoms, especially my pain. And that makes a big difference. So whereas before I would go back on prednisone, I really tried to tough it out. I spoke with my integrative medicine practitioner again because the amino acid supplement dose she had me on was doing wacky things to my body and I had to come off it completely to make sure that was the issue. My hormones had gone bonkers and she told me that this could happen. The mood swings were enough to make me stop the amino acids temporarily at least. However she did add in an anti-inflammatory supplement called boswellia and then told me it was going to take about a month to work.


Shortly after this appointment, I realized that things were still getting worse. Now "worse" for me is all relative. Even though I was doing "worse", I was still functioning much better than last year. However my fatigue had come back with a vengeance, I constantly had pain, tenderness, and swelling in my glands around my face, less exercise tolerance in terms of joint pain, and the issues with my bladder, which I still have to see a urologist for, intensified. My option was to call several different specialists about each issue or just go back on a course of steroids to see what improved and what did not.


Luckily, my rheumatologist is flexible about my dosing of prednisone and when I take it. She makes suggestions and also relies on me to figure out what I need depending on what is going on at the time. That is hard for me sometimes. While I appreciate the flexibility, I am stubborn about being on traditional medications because I know that most of the time, the side effects can be just as bad as the Sjogren's symptoms. I have a lot of arguments with myself about the prednisone. I still feel very strongly that it is NOT the answer as a constant modality of treatment for Sjogren's syndrome because it suppresses your immune system. It does not treat the cause of the illness. That being said, I think that when you are in an acute situation, there is a definite place for it. The problem for me is trying to decide when I am in an acute phase. Having a serious asthma flare or joint pain so bad I cannot walk is acute but I also think that maybe when there are several less critical autoimmune issues going on at once, my body is telling me that it desperately needs to bring the inflammation down.


I struggled with the decision to go back on prednisone because I felt like I had come so far with my alternative treatment. I also do not want to go back on the medication regularly. But then I realized that enough was enough. I needed to do something to get me through this period of time until the integrative medicine treatment plan was more effective. I was also concerned not just about my pain levels, which for the most part I was coping with, but about the possibility of what the disease and inflammation was doing to my organs. I decided to start myself on 20mg and do a one week course by starting at 20mg and tapering down every two days until I reached 5mg and then stop. Typically prednisone needs to be weaned down slowly but this is only if you are taking it for two weeks or more. I have done steroid tapers like this before for my asthma and also for severe allergy issues.


Today is Day Four and I am so grateful that I put my negative feelings about prednisone aside to try this course of treatment. I have never started at this particular dose or done the tapering exactly in this fashion. The 20mg has been enough to settle things down quite a bit but not enough to send me bouncing off the walls in a constant mood swing. I am still sleeping well and although I am a little hyper, I can sit still and rest when I need to. I am not even sure I am hyper as much as I am just feeling normal and like I have enough energy to get through the day. This has by far been my best experience with prednisone. Until I started this week course of prednisone, I did not fully appreciate how bad I was feeling. I was getting through it because my mental state was in such a good place. The gland swelling and pain is almost gone, my joints, especially my shoulders, are dramatically better, and I am not in agony when I go to the bathroom. I don't know what will happen when I come off in a few days but I am hoping for the best. Because if the best happens, then I have a new way to use prednisone for when things get really tough and unbearable. Or for when I go on our honeymoon to Disneyworld in September.


Now if I go through this week's treatment and things get bad again, I will have to discuss this with my integrative medicine practitioner and my rheumatologist. No matter what, I still have to follow up with the urologist. But meanwhile, I have helpful information to pass on to him about the prednisone helping that issue.


I guess what this current run with prednisone is teaching me is that my medical treatment does not have to be all black and white. It doesn't have to be the doctor's way or my way; the rheumatologist's way versus the integrative medicine practitioner's way, and it doesn't have to by high doses of prednisone versus nothing at all. It's about listening to my body and trusting myself. It's about trying to combine the best of what integrative medicine and traditional western medicine has to offer while aiming for the one most important goal: to get my body to a level of functioning that is sustainable and tolerable to me as an acceptable quality of life. I know I will never not have Sjogren's; it will never leave me. But meanwhile, I will continue to do my best to optimize my health and give myself the best life possible.

Thursday, June 20, 2013

Yoga and Me


Sometime in early May I started taking yoga classes at my gym. I had been wanting to try the classes for quite a while, for almost a year, but never had the guts to get myself there. I had taken a few classes about ten years ago but became so frustrated with it that after three classes, I stopped going. I think my frustration was with the fact that I couldn't do most of the poses that were demonstrated. I felt awkward and fat. There was nothing peaceful or relaxing about that for me.


I decided several weeks before my wedding that it would be a good time to try yoga again because from what I had learned, it could really help with stress management. And I was trying to stay as calm and collected before the wedding as possible. Especially because stress exacerbates autoimmune symptoms. I was still self conscious about trying it because in my delusional mind, yoga was for fit people, not someone who at one point was seventy pounds heavier, still overweight, and had the joints of an eighty year old. However the gym I go to has several different levels of yoga classes that are included in my membership fee. I figured that I had nothing to lose if I tried yoga again; except for maybe my pride.


The first class I tried was called Yoga Fusion and was a combination of yoga and Pilates. I thought this was a logical place to start because I had been doing Pilates classes whenever my body could tolerate it and I really enjoyed Pilates. I was wrong. Yoga and Pilates in the same class is very hard, especially when you do not have a good grasp of the concept of yoga to being with.


So I tried a different class called Gentle Yoga. This particular class is offered at my gym several times a week. Currently I attend classes with two different instructors and both of them are fantastic. They are patient, helpful and never once have they made me feel like I don't belong there. I accept their correction in my poses without hesitation and every week, I learn something new.


Gentle yoga was the right choice for me because now, I am hooked on yoga. Typically, in one of the two classes I attend, I am the youngest person in the room. At first, part of me wished I could do a more advanced class and not feel like my body was at least thirty years older than it actually is. However this is one of the lessons and gifts that yoga has given me: it is helping me to fall in love with my body and to have more of an appreciation of what it CAN do. And realistically, my body cannot do more yoga than a gentle class. Even the gentle class is very tough for me at times because a lot of the postures require me to bear a lot of weight on my most troublesome joints, including my fingers, wrists, and shoulders.


But I keep going. This is still relatively new to me and I am hoping that as time passes, my joints and muscles will become more accustomed to what I am trying to do with them. Typically, even when I go to class in pain, I leave in much less pain. The problem is about 12-24 hours later when everything tightens up and my joints feel the effect of all that weight bearing. However I agree with the philosophy that consistent exercise is more beneficial than harmful to my joints, so I keep plugging away at it.


I also find yoga difficult at times because it is hard for me to coordinate the breathing aspect of yoga with learning and performing the postures. That being said, it is well worth the effort. I have noticed a definite improvement in my overall well being since starting yoga. I have also noticed that on the days when I go to class, I have more energy than I typically do. I cannot explain it or do it justice but yoga appears to give me a sense of serenity and calm that I very much need in my life. When I am sitting there breathing and holding a posture, I am not thinking about the things that my body cannot do. I am not thinking that I feel fat or that I don't look like a stereotypical yoga groupie. Most of the time, I am just thinking about how the hell I am going to keep that posture up before I collapse or topple over. And yes, that has happened!


But seriously, yoga is a powerful form of exercise that is helping me to be more accepting of my body. I talk a good talk about how we should all be accepting of our bodies and I do firmly believe that. But I do not always practice what I preach when it comes time to look at myself in the mirror. Somehow, yoga has helped me to look in the mirror and now sometimes be able to look at the positive aspects facing back at me rather than looking at my body with contempt and disdain. I see the upper arm muscles that have toned up. I see muscle definition in my legs as they appear smaller than a few months ago. Most importantly, I feel more at peace with who I am as well as who I am becoming.

Saturday, June 8, 2013

Why I Am Not Mrs. Myers


Not too long ago I posted on this blog's Facebook page that I was not going to be changing my last name when I got married. I had varied responses to that news and differing opinions not to what I should do, but to what others would do. It was very interesting to hear various viewpoints on this issue.

Since I got married May 18th, it has become quite apparent to me how many people, those who didn't see that Facebook post, have naturally assumed that I am now Mrs. Myers (my husband's last name) or Christine Myers. Technically, Mrs. means "the wife of" and I take absolutely no offense to that. I am his wife and very proud of that fact.

I have done a lot of reading on this subject, mostly because I truly struggled with the decision and because it interests me as to why some women change their birth name when they get married and why some don't. According to the Huffington Post in an article posted April, 2013, only 8% of women now keep their last name after marriage. This is down from 23% in the 1990's. Although it appears that as a woman who kept her birth name I am in the minority, I don't think any woman really takes that decision making process lightly.

My name history is as follows. I was born Christine Jeanne Molloy. My dad picked out my first name. My middle name is my mother's first name. My last name is an Irish surname that represents my grandfather's family who originally migrated from Ireland to Newfoundland and finally to Massachusetts. When I married my first husband in 2000, I changed my middle name to my birth name (Molloy) and assumed my ex-husband's last name. By the time we separated in 2008, I was counting the days until I resumed my birth name once again. The biggest reason for that was because I felt that in the years I was married, I lost my identity and I regretted ever changing it in the first place.

When Chuck, my current husband, and I were discussing this issue months ago, he made it very clear that it was my choice. I struggled with the issue enormously because I could make a case to go in either direction. There was a part of me that wanted to take his last name so that we would be identified as a married couple. At first I thought that taking his name would represent our togetherness and our love.

Although I believe in women's rights, I am not a woman who would be considered a staunch feminist. One of the arguments that is made about women who do change their name when they marry is that if a woman does change her surname, it implies she belongs to a man or another person. That we, as women, need to keep our name in order to not lose our independence. I read that in an article; more than one article actually. I disagree with the fact that changing your name causes you to lose your independence. I also disagree with the fact that changing your name implies you belong to a man. Because no matter what your choice is in regards to your name, the fact is you DO belong to another person when you marry them. Not in a possessive way but in a commitment way. My heart belongs to my husband and just as much, his belongs to me. It has nothing to do with what names we choose to go by.

OK, so then why did I decide to keep my name? Because to start with, it's my name. I am Christine Jeanne Molloy. The person who with all her strengths and weaknesses, is a person who is proud of who she is. Christine Myers didn't graduate from nursing school. Christine Molloy did. Christine Myers didn't survive cancer. Christine Molloy sure as hell did though. Some people might be asking now then, why did I change my name the first time I got married? Because I was 29 years old then, not 42. A lot of how I think changed during those years and I thank god for that.

I did have someone ask me before I got married if I thought I was afraid to change my last name again because of how lousy my first marriage, especially since I was so eager to get my birth name back. I did seriously think about that question because when you are marrying for the second time and the divorce rate for second marriages is around 60%, you need to be honest with yourself and make sure you are carrying as little baggage into a marriage as possible. What I realized was that if I had never been married before, I still wouldn't change my name now. It's not fear, just a different viewpoint.

I joked with Chuck when we were having this name change conversation about why couldn't the expectation be that the man changes his last name? I never in a million years thought he would consider that. But he surprised me. He said that if he didn't have children who shared his last name that maybe he would consider the possibility. However after I thought about it some more, I realized that for all the same reasons I wanted to keep my surname, so would I want him to keep his. It is who he is and it is where he comes from. I would never want to change that.

This last name issue is my personal decision. I know people who have kept their birth name, have assumed their spouse's name, have hyphenated the two names, have used two names, and who have completely changed their name. I have no issue with any of those decisions. I don't disagree and honestly, it doesn't even matter to me. What does matter to me is how I feel about who I am. Once we stop worrying about other's people's choices and focus on our own decisions, the world becomes a much better place to live in.

I did a bit of reading this morning about this issue because one of the questions that was presented to me is how should I be identified in say, correspondence for example? For me, anyone that bothers to send us correspondence, such as an invitation, will not be scrutinized. According to various websites the proper format is to address us as follows:

Ms. Christine Molloy and Mr. Charles Myers

Apparently the woman's name always comes first and the "and" is important. The "and" indicates that the couple is married. If the couple was not married, their names would be listed in a column format like this:

Ms. Christine Molloy
Mr. Charles Myers

So what would happen if someone sent us an invitation or piece of mail that looked like this?

Mr. and Mrs. Charles Myers

That's great! While my name is not Christine Myers, I am "the wife of" Charles Myers so no, I wouldn't have a hissy fit. Because most likely, someone just didn't know about my decision to keep my name. And again, I am the "wife of". It would be funny though if we received mail that looked like this:

Mr. and Mrs. Christine Molloy

Throughout this process I have learned that the name I have in no way represents the strength or quality of the love I have for my husband. Anyone who was at our wedding ceremony for at least 30 seconds would have seen that with their own eyes. I have also learned that when I listen hard enough to my own gut, the answers are right there. The day we went to apply for our marriage license there was a space that said "surname after marriage" or something to that effect. I realized that I had not 100% made a decision in my mind before we went to the town hall. And then it happened. My heart said to write Molloy and before I even had a chance to question it, my pen was on the paper writing the letters that have forever known to be a representation of who I am: Christine Jeanne Molloy.































































































Photo Courtesy of: irishsurnames.com