Tuesday, July 24, 2012

July is Juvenile Arthritis Awareness Month

Did you know that there are approximately 300,000 children in the United States that have arthritis?  A little over 2 years ago I didn't either.  I, like a lot of people, thought that arthritis was only a problem for older people.  Then I woke up to Ella crying around 1:00 am on June 21, 2010...her 3rd birthday.  Her knee was swollen, red, and hurting her very badly.  She couldn't walk or put any weight on it at all.  I was a little freaked out, but thought it must just be bad growing pains or something.  Unfortunately, it wasn't just growing pains.  After months of tests...x-rays, ultrasounds, blood work, and countless appointments, Ella was diagnosed with juvenile arthritis.  Here are some facts about juvenile arthritis:

-Juvenile Arthritis is one of the most common childhood diseases in the US.
-There is no cause or cure for juvenile arthritis.
-Symptoms of JA include pain, swelling, redness, and stiffness of joints.  Unlike adult arthritis, JA can also attack the eyes, skin, gastrointestinal tract, and other organs.  Fever and a rash can also be symptoms of some types of JA.
-There is no single test to diagnose juvenile arthritis.  A diagnosis is based on complete medical history and careful medical examination.
-Care by a pediatric rheumatologist is important for most forms of JA.
-The primary goals of treatment for JA are to control inflammation (swelling), relieve pain, prevent joint damage, and maximize functional abilities.
-Treatment plans usually include medication, physical activity, physical and/or occupational therapy, education, eye care, dental care, and proper nutrition.

(Taken from the Arthritis Foundation (www.arthritis.org))

JA is a very unpredictable disease.  Some days Ella has little or no pain.  We love good days!  Then there are days when she has a lot of pain, swelling, and stiffness.  She also gets fevers and sometimes a rash when she has a flare up.  In addition, she has developed acid reflux from the medicines we use to minimize her symptoms.

This is the rash Ella gets sometimes when she has a flare up:

And here are her swollen knees:

We are still working with Ella's doctors to figure out which type of JA she has and which treatment will work best for her.  The ultimate goal is for her JA to go into remission and stay that way.  I hope and pray we see that day soon!  

Ella on her 5th birthday (6/21/12)

Monday, May 14, 2012

3 months...

Tomorrow will be 3 months since I found out that I have celiac disease and have been on a gluten free diet.  Honestly, my first instinct was to take a day or two and eat an insane amount of all of the gluten filled goodies that I knew I'd be giving up and then go gluten free.  But I decided that probably wasn't the smartest move in the world and cried a little and resisted the urge to yell and scream and punch things, and I haven't eaten any gluten since then (well intentionally anyway).  I feel about a million times better.  Its really been amazing.  I honestly did not know that I felt so awful until I started feeling better!  In addition to the umm...digestive issues (trying to think of a not so gross way to put it...) clearing up I have more energy, I'm not fighting the urge to sleep all day, I am finally sleeping well at night, the almost daily headaches are gone, the cramping and bloating is gone, and I just feel good!  People, especially the girls, tell me that they feel sorry for me frequently and honestly, that drives me crazy.  I know they don't mean anything by it and I really do get where they are coming from.  It does suck to give up so much stuff that you use to love and that those around you still love.  But, please don't feel sorry for me.  I feel good.  Giving up those foods is totally worth it.  I'm not sorry.  I'm thrilled that I finally know why I felt so bad and I'm now feeling so much better.  So don't feel bad that I"m feeling better.  I promise you no matter how good whatever it is you're sorry I can no longer eat is not THAT good.  Its not good enough to be worth feeling absolutely miserable.

I do miss "real" foods.  I miss bread.  And not gluten free bread.  I still can't do it.  Well I can tolerate some of it, but I don't like it.  The texture is weird or something.  Maybe it just takes a lot of getting used to.  Hopefully I"ll get there eventually :)  I miss white bread...and sandwiches made with it.  I miss rolls and biscuits.  I miss good pizza.  Yeah, I've had some pretty good gluten free pizza.  Fuel pizza has a good GF pizza and there are a couple other restaurants that offer GF pizza (not dominos though...don't even get my started on how insanely frustrating that whole mess has been!).  But, its a little pricey.  I miss cheap frozen pizzas.  I loved those things.  I'm almost embarrassed to admit how often I ate them.  Its probably better off that I can't eat them anymore :)  I miss bojangles biscuits and krispy kreme donuts.  But as much as I miss those things and wish they would come up with just as good gluten free alternatives, I would never eat them.  Like I said before, its just not worth it.  I've accidentally had gluten a few times and trust me, its not pretty.  Its not something I'd willingly put myself through for anything...no matter how good it looks/smells/etc.

I'm finding a lot of people are clueless about gluten, celiac disease, gluten sensitivity, etc.  I'm not really surprised because until Ella started on a gluten free diet, I was clueless too.  It gets frustrating at times though.  I get tired of explaining that no, I can't have just one bite or take a weekend off or whatever.  People who decide to go gluten free because its a new fad or whatever now are making things worse.  Yes, those people can take breaks and eat just a little or whatever, because they don't NEED to be on a gluten free diet.  But for those of us who have celiac disease, things are very, very different.  We HAVE to stay on a gluten free diet all day every day, all the time, every single bite for the rest of our lives.  We will pay the price if we cheat and its just not worth it.

I think I've finally gotten the hang of it.  Its been a lifestyle change.  Going out to eat is much more challenging, grocery shopping is a new adventure and takes longer because I have to read labels, etc.  I've slowly figured out the weird things that may have gluten or cross contamination issues.  I've still got more to learn, but its not nearly as overwhelming as it was at first.  I'm trying new recipes and figuring out gluten free meals that we all enjoy.  I finally feel like I've got this under control :)  And it helps to have Ella as my little gluten free buddy :)  I think its helped both of us to have the other one who gets it.