Tuesday, February 17, 2015

Read "On Being Naked" on The Manifest-Station

I have been a writing a lot lately and I thank the Lord for that. I was going through a difficult time with my writing, which started sometime before Tales From the Dry Side was published and lasted right up until about the end of 2014. Part of the reason was due to being so busy in early 2014 with the book and starting a new job back in the nursing field (yay!). I love and am absolutely proud of Tales From the Dry Side, but the marketing that goes into self-publishing a book successfully is astronomical.The other big reason for having a difficult time with my writing was that I was having a hard time connecting with myself and I just couldn't seem to get it together to make the sentences come as often as I would like.

Some of my blogging, maybe half of it, is writing designed to teach and inform, mostly about Sjögren's syndrome and autoimmune diseases in general. The rest of it takes the form of a personal essay. If I just wrote personal essays for the rest of my life, that would be fine with me. I may try my hand soon at fiction again; we will see. I may try and publish another book. The jury is still out on that one.

Lately, for reasons that have recently become clear to me, my writing has been more intense, more authentic, and not to sound like a jerk, but good. More like great. Great because I am more willing to share more of my personal experiences and feelings with my readers and at the end of the day, we are all human. We all want to connect and know that someone else feels how we do. Some of the writing never gets published or makes it to my blog; its just for me.

My girlfriend, Tina, is one of those people who connects well with others. I know that if I want to get together and have a chat with a gal pal and have a conversation with some real depth to it, she's one of my girls. A few months ago, Tina introduced me to a website called The Manifest-Station, founded by Jennifer Pastiloff. Jen is a writer, yoga instructor, and overall great human being. She leads sold out workshops all over the world which you can check out HERE if you'd like. Tina knows how much I am devoted to writing, yoga, and how sensitive a soul I am. The Manifest-Station is a website/blog where sensitive souls, and excellent writers (including Jennifer) share their personal experiences and more importantly, look for the beauty in every day life. Also known as Beauty Hunting.

Tina also called my attention to the fact that The Manifest-Station was accepting essay submissions. I was working on a piece that had to do with body image issues and I thought it would be a good fit for The Manifest-Station. I found out yesterday that the piece was accepted and it was published this morning.A huge thank you to Jennifer Pastiloff and her staff for loving this piece as much as I do. You can read it by clicking on this link:

On Being Naked

Sunday, February 15, 2015

Who Reads Thoughts and Ramblings?

I few days ago, I posted a status update on the Thoughts and Ramblings Facebook page (which you can find HERE) asking readers where they are from. On the Facebook page, approximately 5% of those who liked the page answered the question and that is where I got all the information about states in the U.S. where people are located.This is a huge issue I have with Facebook because for very small business pages like mine, my posts often do not show up in the newsfeed, so I know I am missing a ton of information on this poll. However, I also have some information on where people are from included in my statistics for this blog, countries only. I wanted to tally up some information on these statistics because I am curious and also to see how far this blog, and its information, is getting.

From the information, however limited it is, I did get, I was able to tally up the following information:

Thoughts and Ramblings followers are from at least thirty-one states in the United States of America and three provinces in Canada. In addition, besides the U.S.A. and Canada, there are readers from at least ten other countries including Ireland, England, Ukraine, Mexico, India, China, Germany, Taiwan, Italy, and Australia.

I think this is awesome! Thank you to all who responded to the poll on Facebook and to all of you who follow this blog, share it with others, and help raise awareness about many of the issues that I discuss here, especially autoimmune illness!

Friday, February 13, 2015

Luck Has Nothing To Do With It

For the record, I have only ever written one post regarding Valentine's Day. I was with my current husband and the post was about how anti-Valentine's Day I was and had always been. It is just one of those things where I feel like it is a holiday that is overdone, commercialized, and unnecessary because honestly, we should be doing a little Valentine's Day each and every day. However Valentine's Day holds some importance with my husband so last year, for the first time, we made solid Valentine's Day plans for dinner. We never made it to dinner because on route to dinner, I required a stop at the Granby Fire Department and a subsequent ride to the local emergency room. Long story that I would rather forget!

This year we are planning on doing something, but never got to the point of actually making a reservation, mostly my fault because I don't want to jinx it after last year and we are expecting yet another major snowstorm in Massachusetts, so I think we are going to wing it. Honestly, whatever my husband wants to do is fine with me. I just want to be with him.

This morning I was puttering around the house doing my usual "get my body ready for the day" routine and The Today Show caught my attention. They had cameras going at the Rockefeller Plaza skating rink where some popular female singer was singing some beautiful love song that you have all heard on the radio. There were twenty-five couples skating around on the ice and then all of a sudden, one person from each couple dropped on one knee and proposed marriage.

OK, typically I would think how lame this was. Not because I am not a romantic, I really am. But just because of how corny and public it all was. Instead, I started bawling like a baby. It was ridiculous. Molly (my dog) sat up and was staring at me wondering what was going on. And I kept crying.

I realized that I was so touched by the whole thing because I spotted several couple on the ice skating rink during the mass proposal event that were obviously older than the traditional marrying age that we are accustomed to hearing about. Couple that looked like they were in their 40's, 50's, and 60's. For those of you who do not know, I was 42 when I married Chuck and he was 56. Not a first marriage for either of this, and maybe not for some of those couples on television either.

Seeing or hearing about later in life marriages always make my heart sing. And that is what brings me to this Valentine's Day post today.

I frequently hear from people about how lucky I am to have met my husband. From what I have experienced and from what others have told me, it gets harder to meet a guy like my husband (or a wife like myself!) as you get older. I would agree with that, on all counts. It IS harder and I AM lucky. I married a faithful, loyal, handsome, hard-working, hysterically funny, kind, compassionate, humble, and unique man. I am attracted to him on all levels more than I have ever been attracted to any human being.

He is my best friend.

And, luck had nothing to do with it.

While I will tell you that I think he was placed in my path by God (we did meet at church!), luck was not a factor in the development of our relationship and subsequent marriage. We have this beautiful marriage because both of us took risks and overcame fears; fears that we each carried for years and years. I obviously will not speak of his fears and his previous hurts, but for me, it was substantial.

When I found myself in the midst of a crisis, my first marriage, that seemed like it was going to destroy me, I found myself a church and also a community. I took a risk on getting to know new people and let them in, just a little at a time. The same church where I years and years later met Chuck. Once I left my first marriage, I worked on myself, on knowing who I was. I worked on being strong and whole again.

I eventually took more risks. I dated. Contrary to what some people around me believed, I was NOT looking to jump into another relationship. I was looking to have some fun for the first time in years. And when I decided that I was ready, I delved into a relationship and I fell for the wrong person, yet again. And I decided that I was done with dating for a while.

Then I met Chuck. I wasn't looking to ever get married again or even get seriously involved. But we became friends and I was so drawn to him, that we oftentimes found ourselves together in the same room, in the same space. When we started dating, I had to deal with quite a bit of anxiety because I did not want to risk being hurt again. I didn't think I could completely trust again. My heart had been so battered and torn that I thought fending and caring for myself was all I could manage. There was no room for anyone else, there was no energy to love again.

But I did. I had to work on trusting again and making myself vulnerable. Eventually, I completely let him in. We talked a lot. I told him my fears and he told me his. I healed.

Besides those fears and insecurities we originally had, we worked very hard at our relationship. We both have had to make substantial sacrifices to be together. One, that early on in our relationship, I didn't think I could make and almost left because of it. And he took on the burden of getting involved with someone that has a severe, chronic illness. An illness that leaves the future uncertain. But people don't always know about those things, the compromises and the sacrifices. The things that luck has nothing to do with, but love, commitment, and devotion do.

So why am I getting into all this today? Because two really good people, who had given up on love and despite the odds, not only found each other, but made it work. At a time when many people on Valentine's Day have already been married ten, fifteen, or thirty years, our journey is still just beginning. At a time when many people are sitting home on Valentine's Day as a single person either loving that fact, or hating it, I am here to tell you that if you want love in the form of a lifelong partner and companion, it is never too late for that and you are certainly never too old. But that being said, it does require risk and it does require working through the fear. It does require putting yourself out there. And I am also here to tell you that when it is the right person, it is all worth it.

And on this Valentine's Day, if you do not have a romantic partner and/or don't wish to have one, I hope that you remember that despite the media attacks on our senses, love is not about diamond rings, sharing a bed or dates. It is about the love you hold in your heart and the love that others hold for you. Its about sharing your love with others and being open to the love they have to offer you. So to those in my life, my husband, stepchildren, parents, brother, sisters, nieces, nephews, aunts, uncles, cousins, friends, and co-workers, you are special and I love you.

Happy Valentine's Day.

Sunday, February 8, 2015

The Courage of Illness

Yesterday, my husband and I attended the Greater Boston SSF Support Group at Tufts. The February meeting is always unique every year because it is the one meeting a year in which we have round table discussions, instead of a guest speaker lecture. What happens is that different topics that people are interested in are submitted to the moderator. There are three separate sessions during the two hour meeting and in each session there is anywhere from six-nine different table topics. Each support group member goes to the table that has a topic they are interested in discussing with other members. It is a great way to learn and discuss topics that are of interest and are unique to each group member.

This year I facilitated two of the three sessions. One was on the topic on using low-dose naltrexone as a treatment for Sjögren's and the other was on the use of alternative medicine in Sjögren's. My husband and I also attended a session on complications from Sjögren's and he attended a session on his own about being a caregiver of someone with Sjögren's.

Both my husband and I recognized the many faces of those who have attended the group before, but it was very noticeable to both of us that there were a lot of new faces as well. As we spoke with people, we realized that that there were quite a few people who were newly diagnosed and I particularly noticed that there were more younger people than usual. Younger being defined as younger than being in their 30's.

The ride to the support group takes at least an hour and a half on a good day and the day of this meeting, I was definitely not feeling my best. I was in more pain than usual, more tired than usual, and basically just sick of Sjögren's; and the ridiculous winter weather we have been having as of late in Massachusetts. But I knew people were counting on me to facilitate these group discussions and I also had help getting there, so off we went.

As someone who has written a book on Sjögren's, writes a blog, has had the illness for quite a few years now, and does a lot of research, I often get approached a lot during these support group meetings by people asking for advice or asking questions. I will be honest, I love this because for me, it makes all the hell I have been through have meaning because I can then use my experience to help others. It can be a little overwhelming though on days when I am not feeling well. Not because I don't want to help or anything like that, but because it is harder for me to focus and pay attention. I'm sure many of you can relate to how that feels.

The low-dose naltrexone session I facilitated went well, but the alternative medicine session was incredible. I originally had estimated, according to the sign up sheet, that about six-seven people would be attending that session. The session ended up consisting of twenty-three people. After handing out information on a variety of alternative treatments, I had each group member talk briefly about their experiences, if any, with alternative medicine.. It actually surprised me how many people were using different alternative medicine treatments. Some of the most common treatments used were diet (specifically gluten-free and dairy-free), oil pulling (this surprised me, I thought I was the only one who did it), acupuncture, and turmeric. There was some really good discussion and sharing of ideas; an ideal outcome for a session like this.

Because I interacted with so many different people during this particular support group, I heard more personal experiences than I usually do during a meeting. As I have been thinking about the meeting since yesterday, there has been a common theme that keeps emerging in my mind. And that is how much we, as Sjögren's patients, go through on a day to day basis. And the amount of courage it takes to live with this crap day after day, week in and week out. I'm not just talking about the path to diagnosis, which as we know, is usually a nightmare in itself. But rather, the amount of care we need to provide ourselves in order to manage our symptoms each and every day.

For me personally, a lot goes into existing in this illness stricken body day after day and I think that I often take that fact for granted, mostly because I feel like I cannot always dwell on how difficult it is or I will spiral into a massive depression. I also think that a lot of what I do to manage my illness becomes routine at times and I also take that for granted because well, its my life and its what I have to do. Just the steps that I have to take every day to prevent complications as a result of the dry eyes and dry mouth is time-consuming. Seriously, think about what the average non-Sjögren's person does to care for their eyes and mouth every day. Most people I know brush their teeth twice a day and maybe floss once or twice a day. See a dentist every six-twelve months or so. Some non-Sjögren's people have to put in and remove contact lenses every day or keep track of their eyeglasses.

For those of us with Sjögren's, it is so much different: meticulous oral care such as frequent brushing, flossing, oil pulling, saliva substitutes as often as every hour, more frequent dental visits, special oral rinses, managing dry lips, dealing with swallowing issues from the lack of saliva, increased cavities, eye drops every thirsty minutes to an hour, warm eye compresses several times a day, waking up during the night from the discomfort of dry eyes and dry mouth, using and caring for a humidifier, trying to avoid dry environments, the list goes on and on.

And that is just our eyes and mouth. As we know, for most of us, that is just the tip of the iceberg. It doesn't include the management of pain, fatigue, and other organ complications with our lungs, heart, nervous system, digestive system, kidneys, bladder, etc. etc.

When I did a rough estimate of the amount of time per day I spend on managing this illness (including but not limited to: medications, treatments, physical therapy, diet management, phone calls, medical appointments, etc.), I realized that the average amount of time I currently spend managing my Sjögren's is three hours A DAY! And that is when things are relatively stable.

As I think about that and about all these patients yesterday, one word comes to my mind and that is:


Guys, this illness business is not easy. One of the definitions of courage is: strength in the face of pain and grief. This courage we exhibit is something I needed to be reminded of recently, by people who understand what it takes to live with this illness. It takes an incredible amount of courage to wake up every single morning and know what we have to face...

The special care our bodies need.
The pain.
The stress of modifying our day to meet our physical, emotional, and spiritual needs.
The grief over what we have lost.
Finding treatments to manage an incurable illness.
Dealing with a medical system that at its best, is broken.
Facing the possibilities of long-term complications and even death.

People who don't know better or don't understand this invisible illness, they may say you are lazy, or weak, or making it all up. But friends, I know better. YOU know better. You are warriors. Each and every one of you. Despite the odds being stacked against you, you rally on. You go to work, or you educate others from the confines of your home. You tell your story. You care for your children and your parents. You volunteer to help those less fortunate. You rescue abandoned animals.

I have heard your stories.
You all exemplify courage.

Don't let anyone ever convince you otherwise.
Own your strength.