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.

Today Has Been Cancelled

wishful day
wishful day

I am so frustrated today!  I went outside to take the dogs out and realized it was actually pretty warm outside.  What a perfect day to pull in my Thanksgiving/fall decorations, wrap up my patio furniture for the winter, and string my Christmas lights.  Of course, I’m not going to do any of that.  Instead, I’m going to stay in the house, lay low, and try not to be super frustrated with myself.

I woke up yesterday running a fever and it has decided to stick around.  One of the frustrations of having a chronic illness is that this happens to you and it happens more often than we admit.  I think, for the most part, we eventually come to accept the reality that we just can’t do everything that we want to do but it really hits home when you can’t do ANYTHING that you want to do.  Luckily, I didn’t have any plans made already or I would have had to cancel, which would make me feel even worse.  Because we worry about this possibility so often, I think it gives us a heightened sense of disappointment when it does happen.  I know that it’s counter-intuitive to think about becoming sick because stress and worry are two things that actually contribute to it.  However, because it’s a fact of life for us, it’s unavoidable.  I should have recognized the signs but, because we have so much to do around the holidays, we sometimes refuse to recognize, or acknowledge, the fact that we’re doing too much.  I am so stubborn about having to limit what I do that I am not always doing what I need to.  It’s like I’m convinced that if I am able to push through, just this once, I may be rewarded for my efforts and have no repercussions.  Sometimes it works but usually it doesn’t.

I’m lucky.  Most of the people I make plans with are my family and they would completely understand if I need to cancel on them.  I rarely do it because I don’t want to abuse their understanding and I truly enjoy spending time with them.  I know that some of us have it more difficult than I do and have lost friends and family members over it.  We tend to hesitate and not reach out as often in order to avoid disappointment.   I have a few friends that I’ve had to cancel on and don’t see as often, which is hard.  It’s hard to make plans in advance or to have to call at the last minute and see if we can change plans.  It’s unfair to ask somebody to come over to my house just because it’s easier for me, so sometimes time goes by without seeing them.

It’s gotten pretty easy to put on a happy face most of the time.  That’s what we do.  It does not mean, however, that this doesn’t affect us; it just means that we’ve gotten to the professional level of hiding how we feel.  I’m embarrassed and disappointed when I have to cancel plans.  I’m sad and disappointed when I don’t see or talk to somebody in a long time.  Daily, I think about these things, shrug my shoulders, pretend I don’t care, and go about my day.  Again, it’s not anybody’s fault, it’s just the way it is and another aspect of how our lives are affected on a regular basis.  We don’t want anybody to feel sorry for us or to get angry so we try to hide all these feelings.  Sometimes we do want somebody to understand, though, and sometimes we DO allow ourselves to feel bad about it, especially on days when it’s nice outside and you wanted to get something done but you’re stuck in the house running a fever.  Those are the days when we hope you understand and send us a gentle hug (and maybe a text letting us know everything is okay).

Be Thankful and Be Kind

thankful
thankful

On Thanksgiving, we’re all supposed to be nothing short of grateful and appreciative.  And I am, but that’s not all that I am.  I am also a little sad.  There are lots of people in this world today that feel like they have no real reason to be grateful or have mixed emotions this holiday season.  We live in a time of transition, confusion, and anxiety.  People, depending on their circumstances, feel anything from happiness and joy to heightened stress levels to despair or hopelessness.  This is all okay!  Just because it’s Thanksgiving doesn’t mean you are suddenly in different circumstances or that you can change your life for the day.  It’s OKAY to not fit the expectation of the day, but you do have to be the best person that you can be and to treat each other with kindness. Continue reading “Be Thankful and Be Kind”