Thursday, August 30, 2012


“If others tell us something we make assumptions, and if they don't tell us something we make assumptions to fulfill our need to know and to replace the need to communicate. Even if we hear something and we don't understand we make assumptions about what it means and then believe the assumptions. We make all sorts of assumptions because we don't have the courage to ask questions.”  ~ Miguel Ruiz

One of the major pitfalls of having an invisible illness is that things do not always appear as they truly are. I mean me. And you. Or the cashier at the grocery store. Maybe even your lawyer, or doctor, or mechanic. The meaning of the term invisible illness is pretty self explanatory but in my case and for thousands like me who have Sjogren's syndrome, autoimmune illness, or any other type of chronic illness, having an invisible illness means we can look perfectly well on the outside and be suffering with a host of symptoms on the inside. Because of that, a lot of assumptions are made by other people about us, how we feel, and what we are capable of doing.

These assumptions that are made by people in society are not exclusive towards people who are ill. We make assumptions about people we encounter all the time as we go through our day. Some of us more than others. Myself included. Based on observations we have made, without knowing all the facts about a particular person or situation, we form opinions and accept some idea about a person as a fact. Oftentimes this is due to a lack of communication or because of our own preconceived notions and ideas about how people SHOULD act or behave. These facts that we develop in our mind are based on our own ideas and not necessarily based on the reality of the situation.

Invisible illness and chronic illness in general are catalysts for people making assumptions because of what others cannot see or understand. This notion affects me on a regular basis. I get stares or nasty looks from time to time from other people on the occasion where I use my handicap placard to park at a store on my bad days. Why? Because I am forty-one years old and I don't use a wheelchair, walker, or cane. Assumption made. I am abusing the system.

Or I am helping out a friend or acquaintance who is having a crisis. I may have to plan the rest of my entire week around doing this. Someone else observes me out and about and subsequently asks for my help with something that is not as critical. I have to say no because I have to oftentimes obsessively manage my energy and time. Assumption made. I do not care enough or I cannot be bothered.

Sometimes assumptions get made because of how we ourselves chose to deal with our illness or limitations. Typically, I am relatively candid in my blog about how illness has impacted my life, both in positive and negative ways. Overall, I try to keep the mood and context of my writing upbeat. This is not exclusive to the writing in my blog. I try to stay positive on my blog's Facebook page, in my conversations with other people, and in my overall attitude in dealing with this life changing illness.

People read upbeat things that I write or see me involved in activities and sometimes assume that I am a vision of perfect health. Well, OK maybe not perfect health, but you get the idea. She's happy, she must be doing very well they think. Sometimes they could not be further from the truth. And you know what? That is perfectly fine. I don't need the world to know every time I am not feeling well just like I don't know the details of every difficult issue that is going on in other people's lives. However, where it does become a problem is when people make these assumptions and do not understand why I have not been in touch or why I may need to say no to a project or cannot offer assistance. That is why I write entries like this. It is nobody's fault. People just don't realize.

Here's the thing. I do struggle. I struggle much more than I let on. I am not stating this because I want anyone to feel sorry for me; just the opposite. I don't always let on about how much I am struggling physically, or emotionally, with my illness because I am working on something that is very critical to the rest of my life right now.

I am trying to make sure that this illness does not define who I am as a person for the rest of my life.

This is a very hard thing to do when managing a chronic illness takes up so much of my daily life.

But I am so much more than my illness.

So I HAVE to stay positive because I strongly feel that on many days, attitude can be the difference between whether I am functioning or not. The difference between a life of fulfillment versus a life that feels like doom and gloom.

So no, I am not in denial about the impact of Sjogren's syndrome on my life. I am actually scared to death about my future. But I cannot sit around and dwell on it every single day and feel sorry for myself. I write about my illness a lot in my blog and am writing a book about Sjogren's because I feel that I have a lot to share that may be helpful to other people. Other than that, I try to choose sharing mostly the good and positive parts of my life with others. Like my writing. And my new nutrition/exercise plan. And my upcoming wedding. But it doesn't mean that one should make the assumption that while I am being positive, that I am not in the process of increasing my prednisone again, looking towards the likelihood of two minor eye surgeries, managing out of control pain and fatigue and doing all this and more while still trying to have a life. It doesn't mean I don't want to talk about my health, it just means that I don't want to have to explain away other people's assumptions all the time. I know, I know, I shouldn't care what other people think. I am working on that.

As I have written this, I am filing these thoughts away in the back of MY mind so that I can also be more conscious of the assumptions that I make about other people and their actions. Hopefully I can learn to be more understanding and remember to give someone a break. To not make assumptions.

Fair enough.

Photo Courtesy of Chuck Myers:

Sunday, August 26, 2012

Old Orchard Beach Escape

Chuck and I spent four days in Maine recently at our favorite retreat, The Gull Inn in Old Orchard Beach. This was some of our time away, in pictures. Photos courtesy of Chuck Myers:




Tuesday, August 21, 2012

Why I am Staying Gluten and Dairy-Free

Best french fries in the world!! Gluten-free!

Over the past month, possibly even longer, I have been thinking a lot about whether this whole gluten and dairy-free eating plan I have been doing is worth it. Although it has gotten much easier, once I started doing Weight Watchers in addition to it, it made things a bit more complicated and challenging. However on two separate occasions, I intentionally ate a food item with gluten and/or dairy in it and noticed that I had some joint pain afterwards. Coincidence? Maybe. However at the time, it wasn't worth the drama of investigating the issue any further.

That was, until I was off prednisone for over a month and my old enemy, joint pain, came back into my life on a regular basis. Despite a regular exercise regime and eating healthy, the joint pain and stiffness associated with arthritis began to worsen as well as the autoimmune related migraines, fatigue, and worsening of dryness symptoms. Is it possible that if I was eating gluten and dairy that the symptoms would have been much worse? Maybe. Like everything related to my illness, nothing is ever certain. Everything about it remains elusive to me.

So I go back on a low dose of prednisone which I remain on as I write this, which has given me some relief while my doctor is working on contacting my previous rheumatologist to investigate what previous treatments have been tried, why they were stopped, what worked and didn't work, and try to decide if some of the medications I am taking now are making me worse rather than better. There is the possibility of adding another, possibly toxic, medication. The saga never ends.

During all of this, my fiance and I leave for a four day weekend trip to Old Orchard Beach in Maine. A place not exactly known for its gluten and dairy-free lifestyle. Junk food everywhere you turn and you can smell it within like a mile of even approaching the pier and downtown area by the beach. I had a plan though. I packed a bag of gluten and dairy-free snacks for the three hour drive up and back so I wouldn't have to worry about eating on the road. I did a Google search on restaurants in Old Orchard Beach (OOB) to see what my options were.

I had made a conscious decision that while I was not going to let myself eat out of control, I was not going to be strict about counting points for Weight Watchers while I was away and give myself a break in regards to being so strict about my Weight Watchers plan. I know my leader would probably frown on this but it felt like it was the right thing for me to do. The gluten and dairy issue was going to be difficult enough. I felt confident that once I was back home, I would get right back on track with Weight Watchers, which I have.

My plan at OOB was to allow myself one dairy item which was a soft serve vanilla cone that I have been wanting all summer; and I mean ALL summer. I have been going to ice cream places with friends and their children all summer and getting sorbet with this plan in mind. My intent was for everything else at OOB to be gluten and dairy-free.

So this is what really happened. Out of the four days we were there, I was completely gluten and dairy-free for two of them. I was already having quite a bit of joint pain and fatigue when we got to the beach and pretty much was having a "what the hell is the difference now?" attitude about the whole gluten and dairy issue. I don't think my eating was out of control in terms of amount but the type of food I ate made me feel so lousy that my body felt like I ate 10x more than I actually did. When I sit and think about the gluten and dairy items I actually DID eat in those two days, it came down to: that small soft serve ice cream cone, one regular beer, a buffalo chicken quesadilla (didn't finish it), and a large slice of pizza. Everything else I ate the whole trip was gluten and dairy-free as far as I know. But I think the gluten and dairy was such a shock to my system that it felt that I ate so much more than that. It's called bloat.

Now I cannot say that any of my autoimmune symptoms got worse because I already had joint pain and if anything, that got better. Not from eating gluten and dairy, but probably from being back on pain medication and decreasing my stress levels by being at the beach. But those food items did wreak havoc on my stomach. Now you have to keep in mind what I ate. That was some seriously greasy (and yes tasty) food. I cannot say if it was the gluten and dairy that caused the stomach issues or the type of food that did it. I can say that before vacation, I was eating much healthier. But, I was also eating, on occasion, similar foods such as pizza and buffalo chicken. I was just eating gluten and dairy-free homemade versions that were much healthier as well.

Here is what I do know. Without a doubt, I am very glad that I took my two day hiatus from my gluten-free, dairy-free lifestyle. While it does not answer the question of whether or not gluten and dairy directly the severity of my Sjogren's syndrome, it is very clear to me that is directly affects my overall health. It does this by making me stop and think about what I put in my mouth. I make healthier food choices. I eat more whole foods rather than processed foods which is much better for people with inflammatory disorders like mine. Gluten and yes, even dairy (no matter what the media tells you), have no nutritional value and therefore are not a necessity for my body. I cook more than I eat out. I have seen improvement in other areas of my health not related to my Sjogren's including my weight (because I am making better choices), my skin, hair, and nails, my gastrointestional system, and my menstrual cycle.

I am not saying that a gluten-free, dairy-free lifestyle is for everyone but for me, for now, it is worth the effort. My health is worth the effort. My life is worth the effort.

Photo Courtesy of Google Images

Wednesday, August 15, 2012


"We all have an inner voice, our personal whisper from the universe. All we have to do is listen - feel and sense it with an open heart. Sometimes it whispers of intuition or precognition. Other times, it whispers an awareness, a remembrance from another plane. Dare to listen. Dare to hear with your heart.” ~ C.J. Heck

As I have spent all of today trying to take care of several issues, including packing, in an attempt to get ready for a mini vacation with Chuck, it dawned on me how just emotionally stressful the last few weeks have been for us and what a welcome relief this time away will be. You know how it is, we all do. You go through a period where it is one thing after another and you need a break. Usually for me it is more the need for a physical break which involves spending more time at home, not away from home. Right now though, the need to be away is overriding my physical needs. And truth is, I can be just as happy resting on a front porch overlooking the ocean or laying on the sand as I can laying on the couch. As Chuck pointed out when he collapsed into bed last night, for a variety of reasons, it has been the emotional toll that has been heavy on us most recently. Because well, life happens.

So as I was going through my day and thinking about how life has happened lately, I started thinking about intuition and how much that has come into play this past week. I know that may seem completely random but it is not. I have always had a difficult time following my intuition or listening to my gut as some may say. Maybe because I am afraid of being wrong or offending people. I think oftentimes it is because I tend to over analyze things to the extreme.

Haven't we all been there? Had a gut feeling about someone we've met or started to get to know and then found out later that the uncomfortable or "off" feeling we originally had was warranted? Or maybe we suspected something was wrong with our health and yet continued to let a doctor dismiss our ongoing complaints; despite feeling deep down that we knew something was very wrong with our body? It can be the deep down feeling that says this person is not the right partner for us (no, not Chuck!), or that this is the wrong job for us to take, or maybe that this is not the right way for us to celebrate a special occasion or holiday. It's that little feeling deep down in the pit of our stomach, well at least for me, that says "Hey listen to me!" But we don't. We let other people's opinions, emotions, and needs take over. We let our own fears, indecisions, and insecurities override what our gut is so desperately trying to tell us.

So as chance would have it, I have used my intuitive senses to make quite a few decisions lately; which is highly unusual for me. Decisions about when to step forward and when to step back. When to challenge and when to let something be. The reasons and situations have been varied and to be honest, none of them have been pleasant events. They have ranged from helping my partner deal with a family member's illness to supporting a family I love very much as they make the decision to euthanize their beloved dog; with a lot of other stuff in between.

An example of one situation happened to me on Saturday. Chuck and I were spending some time with some children who had recently lost their mother. We were waiting for our dinner to come at a very crowded restaurant and the five year old crawls up onto my lap, throws her arms around me and starts to cry as she tells me how sad she is that her mommy is dead (her words). The logical part of me thought maybe I should tell her I know this and try to change the subject. Not because I didn't want to make a scene, but because I didn't want to make her feel worse. But my gut told me to let her cry, let her talk about it, ask her a few questions about her mommy and just let it happen. And that was what we did. Now some children's shrink may disagree with that plan; I really don't know. But considering how well she continued to do with our outing after that, I know it was the right thing to do.

So be brave.
Follow your intuition.

Thursday, August 9, 2012

Before and After

At my Weight Watchers meeting this past Tuesday a woman that comes week after week hit her one hundred pound weight loss mark. It was a very exciting meeting! We all knew that it has taken her months to lose those last few pounds to reach that goal. As she told her story, I was impressed by her determination and I took note in the parallel between our journeys. Like me, it has taken her a while to lose that weight, one pound at a time. She has had ups and downs along the way and overall it has taken her three years to lose the one hundred pounds.

While she was telling her story, she pulled out a photograph of her former self 100 pounds heavier. She has carried this photo around with her during her weight loss journey these past three years. She agreed to pass it around so that the rest of us may gain inspiration from her amazing journey. The difference was shocking. She did not even look like the same person.

It made me realize that as I am going through my own weight loss and health improvement journey that I do not often stop and take the time to appreciate how far I have come and to notice the difference in my body; especially the changes that have occurred in the muscles and shape of my body from exercise. So I have begun the hunt for my own previous photos. I called my mom to see what she had lying around and I started checking out my old digital photo disks. My goal is to find my own inspiration photograph, especially since I realized this morning when I got on the scale that today, August 9, 2012, I am sixty pounds lighter than my heaviest weight approximately three-four years ago.


I know I still have such a long way to go but taking the time to stop and see that I CAN do it is such an important part of the process and I encourage anyone else who is on this difficult journey to do the same! Have a great day!!

Emily's christening 2007. No, I did not give birth to her although you would think I did. About 50 lbs. heavier than today.

My brother Dennis and I with Emily (my god daughter) in 2008. About 60 lbs. heavier.

My buddy Jake and I. At least 50 lbs. heavier.

My dad and I June 2012. About 50 lbs. lighter. Yay!

At the New England Air Show last week. 59 lbs. lighter!

Monday, August 6, 2012

"What Do You Do All Day?"

“Disability is a matter of perception. If you can do just one thing well, you're needed by someone.”  ~Martina Navratilova

What do you do all day? A question that I have been asked many times by a variety of people. For those of you who don't know me, the question gets asked because I have not worked at a job for approximately three and a half years now due to a medical disability. I am forty-one years old. I have no children. In a society where most citizens work, stay home and raise children, do both, or are retired, I am an anomaly. And yes, I am very well aware of this fact.

I will be honest here. Up until recently, anytime this question was asked of me, I would get angry and defensive. The question gave me the impression that if I was not working a job outside of the home or raising kids in the home, what else was there to do in life? It made me feel that because I could not do either of these things due to circumstances way beyond my control, I was no longer useful. And that is why I would become defensive. Because for a while after I became disabled, I did feel useless. But that was MY issue, not the other person's issue. I was in my late thirties when I became disabled and I felt like my life was over.

But my life was far from over. I started over and built a different type of life for myself and made my days productive and fulfilling in ways I never thought possible before I got sick. I don't know what my future holds medically and maybe the routine of my days will change again someday. Although I am very realistic about the nature of my illness, I also hang on to the hope that maybe there is a chance that as insidiously as my work life was taken away from me, maybe someday it will eventually be returned to me.

Very recently, someone whom I respect and care about very much asked me "what do you do all day?" I had not been asked the question in quite a while and something in me clicked. Because it came from a person who I knew genuinely cared about me, I knew the question was just one of curiosity. It was at this point that I realized that maybe people just did not understand that there can be more to life than going to work every day or raising children. That someone like me can go through their days without being bored. Or even go through their days feeling fulfilled and with purpose. Maybe people just don't understand how much is involved on a day to day basis in managing a chronic illness.

And because of those thoughts, here we are. Instead of getting defensive when the question was presented to me again, it made me think of how I do spend my time and I would like to share that. Not because I feel like I need to justify how I spend my days or my life but because I hope that this blog entry may help bring awareness and understanding to those people who may be curious what it is like to be in my situation. And trust me, I am not alone in my situation.

First off, none of my days or weeks are typical. Sjogren's syndrome is a very unpredictable and sometimes progressive autoimmune illness. I can have a week or even a few months without any major issues and then suddenly be unable to function for days, weeks, or months. This is the part that keeps me out of work because you cannot hold down a job when you could be out sick several days a week or even several months at a time; not to mention that you actually have to work several hours at a time, in a row! Even when I am not having a major issue that requires immediate intervention or concern, I have daily issues that need to be dealt with that have become an accepted part of my life. An example of this is the dryness issue. Not necessarily something that would keep me from working a job but it is something that requires regular medical follow up care and daily attention.

OK, so what do I do all day? It greatly varies depending on how I feel. One of the biggest considerations is that I cannot do a full day of activity for several consecutive days due to pain and fatigue so I have to plan accordingly. Due to physical issues and limitations on some days, many activities can take me a lot longer to do, such as housekeeping. Before I got sick, I could have cleaned my current home top to bottom in about three hours, scrubbing floors and all. Now it can take me several days because I have to break the work up into sections. Keeping up the house, shopping, and cooking is my responsibility for the most part. I have made it my responsibility. I have a fiance (Chuck) who works about 55 hours a week and I do not. Although I do have a disability income, I feel that this is my way to contribute more to our household. Now of course this all goes out the window when my symptoms flare up but I do the best I can.

I sit out on an open field on a sunny day and watch my dog run free with elation. I have never had as much appreciation for the good moments in my day as I do now.

When I am physically able to, I get myself involved with worthy causes and other people. I volunteer with my church. I volunteer for whatever comes my way when I am able so that I can make a difference in this world, even if I am not getting paid for it. Sometimes I cannot do something like this for six months at a time and sometimes I can do something helpful several times in one week. I make it a point to never commit to anything on a scheduled ongoing basis because I have done that in the past and it just does not work out due to the unpredictability of my illness. I help out my friends with their children when needed. I also help out friends who are also facing their own health struggles.

Unless something very catastrophic is going on with my body, I try to get to the gym five to six days a week, even if it is just to go and float on a noodle in the pool or swim a few laps. Exercise has been a salvation for me. My hope is that as I take better care of my body, it will become stronger and this will help my illness.

I am constantly doing something to sustain and nurture my personal relationships. Because I have had to slow down, I have the distinct advantage of being able to give my relationships the time and attention that they deserve.

I have been blessed with several passions that I pursue during the week when many other people are at work and they are activities that are especially helpful when I am confined to the house or laid up in bed. Learning to cook and experiment with different recipes has been wonderful; especially since starting a gluten and dairy-free diet seven months ago. And I have also pursued my passion for writing. I truly believe that during the past several years writing has been my other salvation. I can easily spend several hours at a time writing for either my blog, a book I am working on, or for a variety of places that I send submissions to. It is through my writing that I have been able to connect with the world and help people in a way that I can no longer do as a nurse.

I spend time in a library or online learning something new.

Last, but of course not least, I have made a part-time job out of being a patient. This is by far my least favorite thing to do but quite necessary. As I was driving to Hartford last Thursday for an appointment, I did some rough calculations in my head. In the past seven days leading up to the appointment I was driving to, I had spent approximately seventeen hours in the previous week managing my illness. I know there have been weeks where maybe this was a bit less, although not by much and I know there have been weeks where this amount has been MUCH greater. This includes: driving to appointments, hanging out in waiting rooms, the actual appointments, blood work, phone calls to doctors, getting lab results, a support group, picking up prescriptions, calling in refills, calling insurance and disability companies, dealing with social security, taking medication, managing my dry eyes/mouth, saline rinses, setting up/cleaning humidifier, and preparing medications and such for travel.

Seventeen hours.
Like I said, never bored.

I truly hope that this essay has shown that it is possible to have a life outside of a 9-5 job or raising a family. There is more than one way to define yourself as a person. I used to think that if I wasn't a nurse or if that I wasn't anyone's wife or mother, that I could not be of value to this world. Although there are great values to being all of those things, there is also great value in being many other things as well.

A friend.
A mentor.
A daughter.
A dog mommy.
A godmother.
A writer.
A human being.

As people with disabilities, we may not always be able to get out into the world every day to define ourselves. We have physical, mental, and emotional limitations that we need to work around on a daily basis. Most of our days may just be spent trying to meet our physical needs. But I also think that it is important that we allow ourselves, as much as possible, the opportunity to spend some of that time doing something in our day that allows us to define ourselves.

Not just our sick selves.
But as our true authentic selves.

Photo Courtesy of Chuck Myers