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.

Sunday, August 21, 2011

Busy, busy, busy...

Its been a while since I posted anything.  Things have been pretty busy.  The girls and I went to visit my family last week.  We had a great time.  :)  We got back home Thursday evening.  Friday evening Ella started complaining of her ear hurting and running a fever :(  So her and I spent our Saturday afternoon at the doctors office.  Doug and the other girls went to a cookout/pool party that a coworker of his had.  It sounds like they all had an awesome time.

Today was Stepping Up Sunday at church.  Lilly moved from downstairs (babies-preschool) to upstairs (kindergarten-5th grade).  She was so excited!  It will be interesting to see how Ella does from now on since Lilly won't be in the class with her anymore (she didn't go today since she was sick).

This week is going to be a super busy week.  Tomorrow we have to do some cleaning, take Sydney to get her allergy shot, then Alyssa and Lilly have dentist appointments at 2:00 and Ella has her pre-k physical at 2:30.  Yeah, I goofed and scheduled 2 things for the same time.  AHHH!!!  Thankfully I have an awesome husband who is going to take the afternoon of and take Alyssa and Lilly to the dentist for me!  Then tomorrow night is my first night of class!  I'm taking Anatomy and Physiology 2 on Monday and Wednesday evenings from 5:30-8:30 and then I have 3 online classes (College Algebra, Developmental Psychology, and College Study Skills).  I'm kinda nervous...and scared...but I know I"ll be fine.  And with all the girls in school this year (that still sounds so weird....I was expecting one more year with Ella home...) I'll have time to get school work done (hopefully...).

Tuesday morning Ella's pre-k teacher is coming for a home visit at 10:00.  We will get all the info about her class/school and everything.  (She has open house on August 31 then starts on September 1).  Then Tuesday afternoon we have to take the school supplies Alyssa collected for her Safety Patrol project to school and she is also going to interview the teacher she had last year (also her Girls on the Run coach) for her paper on the person who she looks up to in her community.  Then Tuesday evening is Kindergarten open house!

Wednesday is officially the last day of summer break!  I cannot get over how quickly summer has flown by!  Alyssa, Makaela, and Sydney start school on Thursday.  They all met their teachers today and I think they are all going to have an awesome year this year!  Lilly goes for a half day on Friday then starts full days on Tuesday.  She will find out who her teacher is tomorrow.

And sometime in there I've got to finish filling out the mountain of paperwork for the girls to take back on the first day.  I finished with Sydney's stuff and got started on Makaela's before I got writer's cramp and had to stop for a while... :)

Wednesday, August 10, 2011

Whew, what a day!

Its been a busy day today.  Lilly had an appointment with her neurologist at 8:10.  We left the house at 7:25 and still ended up being about 10 minutes late due to traffic.  Thankfully they were fine with it.  I was so scared we would have to reschedule and wait who knows how long for another appointment...  Lilly has been having dizzy spells lately.  She's also been having a lot of headaches...some just "regular' headaches and some migraines.  Her pediatrician was concerned about the dizzy spells and sent her back to the neurologist (she went a couple years ago and had some tests done due to some dizzy spells/passing out spells, but everything came back normal and they said they thought they were just probably breath holding spells or something).  Since Lilly is older and able to explain what's going on better, the doctor was able to get a better idea of what's going on.  She said she thinks the dizzy spells are related to the migraines.  We've been treating her with medicine that makes her sleepy and she sleeps off the headaches, but since she's going to school and having headaches so often, that won't really work.  So she put her on a daily medicine to prevent headaches and gave her something that won't make her sleepy and will stop the headaches when she gets one.

After her appointment, we went to Bojangles and got breakfast (well it was the girls' second breakfast...).  Then we went to CVS to pick up Lilly's medicines (the 3 the neurologist prescribed her plus 2 asthma meds...retail price was $827.30!!!  I nearly passed out.  I don't know how people without insurance do it!). Then we ran by the house to grab a few coupons and take some hamburger out of the freezer so it would thaw out for supper tonight and then went to get Sydney's allergy shots.  Then we went to Target, to Carmax to get the oil changed in the van, and then to Harris Teeter.  We finally made it home a little before 4:00.  It was a super busy day and the girls did great.

Tomorrow we have to run to Bi-Lo and Harris Teeter and do a little coupon shopping (and remember to buy cat food since I forgot, yet again, today...don't worry, they still have food) :)  Then Friday I have absolutely no plans except for laundry, cleaning, and packing for our trip to Roanoke Rapids!  :)

Tuesday, August 9, 2011

Just rambling...

This is one of those weeks with several appointments.  Yesterday Lilly had a dentist appointment to get a filling.  She did great, as usual.  She LOVES going to the dentist.  Before her appointment she asked me if her appointment was just for a cleaning.  I said no, she had to get one more filling and she said "YES!  I get two prizes instead of just one!"  After her appointment we went to the library and then took Sydney to get her allergy shot and then came home and did some much needed cleaning.

Today I had to go to the college to buy books for this semester (which starts August 22...I can't believe how quickly the summer has flown by!).  It was insane.  We got there a little before 9:00 and got in the back of a huge line.  I had all of the girls with me, but they did really, really well.  We didn't leave there until 11:15 and then I had to run to the grocery store (but I forgot cat food again...ahhh!!).

Tomorrow, Lilly has an appointment with the neurologist to talk about the dizzy spells she has been having.  After that I've got to run to the Observer office and get a few Sunday papers since I forgot to get papers on Sunday and then I told the girls we would go to Bojangles and get biscuits (and mashed potatoes for Ella....they really don't have many gluten free choices, but mashed potatoes are her favorite food, so it all works out) if they behaved during the appointment.  Yes, I bribe my kids.  Growing up I swore I never would.  Its just one of the many things I swore I'd never do when I had kids...  Sometimes you just have to do whatever works and if rewarding (okay, bribing...) them with boberry biscuits works, then so be it :)  And we each have $1 off gift cards that we got at Fan Fest on Saturday, so it ends up being pretty cheap too!  After that I have to run to the store to get cat food.  I'd like to go to Harris Teeter at some point since Super Doubles starts tomorrow, but since I won't be able to go first thing in the morning they will likely be sold out of everything that is free or super cheap by the time I can get there.  But, I have a $1 off coupon for gluten free bread which would make it $3.99 instead of $5.99.  And maybe I'll get lucky and they won't be sold out of everything else I want.  Oh, and I have to take the van in for an oil change at 2:00 tomorrow afternoon.

Sunday, August 7, 2011

Great weekend :)

We've had a really good weekend.  Yesterday we went to Home Depot so the girls could go to the kids workshop.  They made pencil boxes and had a great time.  They were able to paint them and then once they dried, decorate them with stickers.  They turned out really cute.

They have already looked all over the house for all the pencils, pens, crayons, erasers, markers, etc that they can find to put in them :) 

Yesterday was 6 weeks since Ella got her ears pierced which meant she could change her earrings.  She picked out the pair she wanted to wear and then the crying started...  She didn't cry at all when she got them pierced, but for some reason she freaked out about me changing them.  After I finally convinced her to let me, she was fine, but man it was a drama filled few minutes.  She's wearing pretty flower earrings now :)

Yesterday afternoon we went to Panthers Fan Fest.  The girls were so excited :)  

Today, we haven't done much of anything and its been great.  I was able to take a nap this afternoon and it was heavenly! :)  Everyone needs to have a lazy day every now and then.

Ella is on a gluten free diet in hopes that it will help with her joint pain.  I've read about people having very good outcomes and I hope the same is true for Ella.  Today is day #4 and so far, so good.  Its getting a little  easier figuring out what she can and cannot eat.  Gluten is in all sorts of things...things I never would have thought would have gluten in them (like cream of chicken/cream of mushroom soup and some brands of chicken broth...).  I had read that some kids have trouble switching and don't like the taste and/or texture of gluten free breads/pastas/cakes/cookies/etc.  That hasn't been a problem though.  She's eaten a couple of sandwiches and said the bread is great.  We had spaghetti last night and she had gluten free pasta (brown rice pasta) for the first time and loved it!  I thought I'd made her too much, but she ate all of it and asked for more (but settled for  a bowl of just sauce and cheese).  And of course she loves the cookies she's tried :)  She has whined and cried a little about not being able to eat some things (mainly apple jacks and oreos...) but for the most part she's done great.  I really hope this helps her.  It really stinks to see her hurting so often.

Saturday, August 6, 2011

Trying this again...

I'm going to try this blogging thing one more time.  My goal is to post at least a few times a week...hopefully daily.  I guess we'll see how it goes.  My problem before was I didn't think I had anything interesting enough to post about, so I just didn't post anything.  But I've got 5 kids...there is always something going on :)  Some posts might be boring...some might be me rambling about something...some might be about what's going on with me or my family.  Who knows...