I’m Lying Every Day

chronic_illness_lying
lying

Because I have a chronic illness, I’m forced to lie every single day.  When you see people at work or at the grocery store or when you see a neighbor out front, our standard greeting nowadays is usually some form of “how are you?”.  It’s at this point that I’m forced to lie, for everybody’s benefit.  For the person asking, they certainly don’t want to hear how I’m actually doing.  How am I supposed to convey the enormity of how this illness affects me every single day of my life?  How could I explain the very real impact of how I feel physically, mentally, and emotionally?  How should I explain my life to them when, nice as they are to ask, they really don’t care at all; they simply asked me to be nice, as a social greeting.  For my own benefit, I’d like to continue to see that person and say “Hi, how are you” and make small talk after today, so I will continue to lie and say “Fine, how are you?”.  How many of us do this every day without really asking how the person is? Continue reading “I’m Lying Every Day”

Lupus Society of Illinois

I want to take this opportunity to thank you for your interest, support, and encouragement.  This is an important cause and is very much appreciated.

This weekend, our team will be participating in the Illinois Lupus Walk.   If you are interested in supporting the Lupus Society of Illinois, you are welcome to view our team page here: Lupus Won’t Dupe Us

 

 

 

Lupus Awareness Month

lupus_awareness
lupus awareness

I’d like to talk about something close to my heart this month.  As some of my readers are aware, I live with a few autoimmune diseases, as do many other people.  Most of these diseases are not easily diagnosed and they are not well-known to the majority of people.   I think most of us have heard the name lupus, but don’t know too much more than that.  This is one reason that it is so critically underfunded.  We need to raise awareness of the symptoms so that more people are diagnosed earlier and are able to seek medical help.  I’d like to have more of us become aware of the impact that lupus and other autoimmune diseases can have on our friends, our family, and our co-workers and how you can help to support them.  This is why I’d like to devote some of my posts this month to the issue.  You will find these (and previously posted) articles under the category of “Chronic Illness”.

There is no cure for lupus.  Many of the medications that are being used to treat the symptoms create significant problems in their own right.  We need awareness and support to find a cure and better treatment options.

By posting a few informational articles, I’m hoping to increase awareness, to inspire support, and to raise interest in the subject.  I am fully aware that this is just one of many causes that we’re all provided information on and we certainly can’t support everything.  In addition to lupus and others, I always support the Juvenile Diabetes Research Foundation and the American Heart Association for personal reasons.  It is my hope that you will learn more about lupus and autoimmune disease in order to provide support as well as to help increase awareness.

Thank you for your understanding.

If you read any of the literature and would like to send me a personal question or comment, please contact me from the site (top right corner/contact me) or email me directly at debsordinarylife@gmail.com.

I always love hearing from you and appreciate the comments that you post!

Sometimes it’s just harder

sometimes_its_harder
sometimes it’s harder

I like to think of myself as a positive person (at least most of the time).  I try to live my life doing the right thing (at least most of the time).  I believe that hard work is important to get what you want and to get what you deserve, but I also believe that things work out like they should (most of the time).

What happens when life hits you sideways and all of your beliefs are questioned?  I know that all of us have different ideas about things, but it doesn’t matter what the specific belief is that’s being questioned.  What matters is how we react when the things that we believe in are no longer dependable.  We have each been in a position where something happens that makes you wonder if what you’ve always believed in is true or not and, if not, what then?  What do you do? Continue reading “Sometimes it’s just harder”

Holiday Treats for All!

holiday_treats
holiday treats

Who doesn’t enjoy a holiday treat like cookies, candy, fudge or cake?  Well, those of us with celiac disease typically can’t indulge since it’s rare to find a gluten-free item included.  It’s really hard to manage this, as well as other food allergies, during the holidays when all of these goodies show up at work, friends’ homes, and at family dinners.

I think we’re all at least somewhat familiar with celiac disease these days.  It’s become much more common than it used to be and is all over the news and social media.  We likely know someone with either a gluten sensitivity or celiac disease itself.  According to the Celiac Disease Foundation:

“Celiac disease is a serious genetic autoimmune disorder where the ingestion of gluten leads to damage in the small intestine.  It is estimated to affect 1 in 100 people worldwide.  Two and one-half million Americans are undiagnosed and are at risk for long-term health complications.”

If you or someone you love is affected with celiac disease, this is one of several amazing resources.  They offer information, product suggestions, recipes, etc.

Since it’s become more publicized, it’s become both easier and more difficult to manage.  You would think that with the additional publicity, resources, and additional gluten-free food offerings, both in the store and at restaurants, it would be easier to eat gluten-free.  It is, in a way.  However, there are so many foods being offered as gluten-free that truly aren’t, it’s frightening to me as a consumer.  At this time, manufacturers are not required to test their product in order to label it as gluten-free; it’s up to the individual manufacturer to ensure that they meet their labeling requirement.   In restaurants, you have to be cautious as well.  Just because they use a gluten-free crust or gluten-free pasta doesn’t ensure that your pizza or your meal is safe.  The preparation, the tools, the surfaces, and the pasta water must all be separate and gluten-free as well.   As much as I appreciate the extra effort by companies and restaurants to accommodate our needs (even though we pay much more for the privilege) it’s not fair to me, as a consumer, to be told something is gluten-free when it’s really not.  It IS up to me, however, to verify this information to my own satisfaction and to then decide whether I will purchase from them or not and choose whether to eat there or not.  Personally, I’m sticking with those brands that are certified or Celiac Support Association-approved (another great resource for lists, resources, and info.) and those restaurants that are diligent in their preparation.

It’s hard enough to manage a gluten-free diet on a regular basis and make these decisions.  To do so around the holidays is the worst!  We are faced with these temptations daily and, as much as we want to give in, we can’t!  It’s not just a matter of gaining a pound or two; it’s a matter of getting sick and setting off an internal process that damages our body and hurts us.  In consideration of your gluten-free friends and family that will likely be with you around the holidays, please honor their restrictions without making them feel guilty or embarrassed by it.  Please feel free to ask questions and we would be happy to provide information on brands or ingredients, etc.  We’re happy to talk about it and share information and awareness.  If you would like to provide something for your guests to enjoy (especially kids), there are lots of gluten-free grab-and-go boxed cookies and cakes at the grocery stores.  Please remember to store and serve these separately!  Fresh fruit or vegetables (with a g-f dip?) are great. There are also so many more things that we can cook and bake such as Chex mixes, candied nuts, fudge, and baked goods with gluten-free flour and ingredients.  I use Progresso cream of mushroom soup in my cooking without issue.  We have lots of resources and we must rely on the information provided to us.  Trust me; we are no happier than you are about this.  We need to make sure that, when it says gluten-free, that it actually is.  Please help us stay safe throughout this holiday season.