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

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 http://myerscreativephotography.zenfolio.com/