Mar 26, 2009


Ayla was diagnosed with JRA. I can't believe one year has gone by since I wrote this first post. It has been a stressful year, but we are in a much better place now than we were one year ago. This time last year Ayla could barely walk , now she is jumping and running everywhere! There have been many times when I have felt we have taken one step forward and two steps back but overall this has been a learning process and you learn what works and what doesn't.

I feel very optimistic about Ayla's progress thus far. Only John and I would know that she doesn't climb the stairs as well as other two year olds or that she isn't running quite as fast or that she has a hard time opening her mouth to eat, but she IS climbing the stairs and she IS running and she IS eating, and for that I am very thankful. I do not know what the future holds for Ayla, but I still have hope and faith that Ayla will outgrow this disease and lead a normal, healthy life. Only the "Great Physician" knows our path and future, and I am willing to accept and follow whatever path he chooses to lead us on. For those of you who do not know, Ayla's middle name is "Faith", we tried two years to have her and I thought Faith for a middle name was fitting. Now I believe it is even more fitting and "Faith" will get us through this time in our life.

One year ago today I started this blog to keep family and friends informed of Ayla's condition. I have really enjoyed keeping a journal of our life this past year and have met some incredible people who are going through the same thing. It is so nice to talk to others who understand what you are going through and I love to help and offer my advice and what I have learned to people who are new to this disease. Most importantly, I hope that in some way I can raise awareness and be an advocate not only for my daughter, but for the three hundred thousand other children that are suffering from this disease.

The city that I live in does not have a Arthritis walk and this has bothered me for quite some time. If you live in a city that DOES have a Arthritis walk, please go out and show your support. I have been in contact with a lady at our local Arthritis chapter (which is in another state) and it is my goal within the next couple of years to organize a Arthritis walk. If you live locally and would like to help me organize this walk please get in touch with me or leave a comment. It takes a minimum of twenty people to get this started!There are many reasons why we need to raise awareness for this disease. Here are a few.

The Facts:
Arthritis costs our country $128 billion annually; $81 billion in direct medical costs.
294,000 children have a form of juvenile arthritis including juvenile rheumatoid arthritis, lupus, and scleroderma.
By the year 2030, 67 million Americans or 25% of the adult population will have arthritis.
Nearly 19 million people with arthritis are forced to stop working within 10 years of diagnosis.
As the most common cause of disability and the third leading cause of work limitation in the U.S., arthritis has a significant impact on our nation’s economy.
Americans with rheumatoid arthritis die 5 to 10 years earlier than persons without arthritis.
9,500 Americans die due to arthritis in 2003.
2/3 of Americans diagnosed with arthritis are under the age of

We need to raise awareness and money so that more research can be done in hopes for a cure for this disease. Another way to do this is to contact your local legislature and encourage them to vote for the
HR 1210, the Arthritis Prevention, Control, and Cure Act.

The Arthritis Prevention, Control and Cure Act WILL

  • Strengthen arthritis public health initiatives, allowing more people to be diagnosed early and avoid pain and permanent disability;
  • Expand the reach of evidence based self-management activities such as weight control and physical activity, which have been proven to reduce pain and reduce health care expenditures;
  • Establish a juvenile arthritis population database to better understand the disease in children and their treatment;
  • Enhance support for pediatric rheumatology training programs; and
  • Establish a loan repayment program for pediatric rheumatologists to address the country’s severe shortage of these critical health professionals.

    Okay, I will get off of my soapbox now, so many people are affected by this disease and this is so close to my heart so I encourage all of you to send a letter to your local congress and ask them to support this cause.
The following poem was found on facebook written by Stephanie Sayre a teenager with JRA. This is why it is so important!!!
My Life in VerseI crack my eyes open; the day beginsA few seconds later, the pain sets inA two hour fight to get out of bedTakes all my strength just to raise my headHalf an hour, clothes on, hair brushedEvery morning I feel so rushedStagger to class, people brush pastTry to take notes; the professor talks so fastLunch is a battle; I don’t want to eatSo many faces I don’t want to meetElevator’s broken, must take the stairsLate for physical therapy, I hope I make it thereThe pain, the anguish, the hour from hellWill I get stronger? Only time will tellPeople sneering “But you look fine”Well I’ve had this, since the age of nineDay is over, I spend a little time with my friendsBefore I get too tired and head off to bedBut I can’t sleep; my eyes are peeledI can’t escape all the pain I feelWell, tomorrow is another dayThe hope in my heart will never fly awayUntil a cure is found, this is all I can sayAbout my life with JRA

P.S. Ayla's original diagnosis was on March 24th,2008 but it took me a couple of days to get this post together.


Erika said...

wow a year... sometimes it feels like you just got the news yesterday & sometimes it feels like all the knowledge you now have, its more like 5 years... What a long strange trip its been huh!? And look at where she is at one year from back then, totally on the up & positive & getting there.

As for the internal mom battles, oh gosh sister... I have them too! I think we all do, but we dont always admit it. But I tell ya, I couldnt hear myself on that podcast without crying. Talking about the past, reading about past posts sometimes is heartbreaking. But we have been given a great deal of knowledge to share & educate with... could you have ever imagined what an advocate you would ahve been a year ago?

I would like to toast my wine glass & give you a big "across the nation hug" from one momma to another watching our babies deal with "this that only makes them stronger!"

Have a wonderful weekend & good luck w/ the walk! You will get 20 folks! HEre's an idea, get the highschool, the key club involved! What about posting an article in the PTA newsletter? What about your local paper? A little publicity goes a long way & Key Club kids need the community service! :) We utilized their spirit for our !

Let me know if you need any help screaming from the west coast :) But I know you will figure out a way!! HIGH FIVE! :) xo xo xo!

Anonymous said...

Look how far little miss Ayla has come in a year... Yes it has been quite an uphill battle for you guys but look at all of the progress she has made in a year. With the wonderful parents Ayla has, all the knowledge you have, and of course God on your side before we know it little miss Ayla will be in remission or who knows cured by next year or the years to follow.

Wow, it seems like just yesterday we met with our little girls playing when Ayla was first diagnosed and I myself was struggling with a diagnosis of Rhuematoid Arthritis/Lupus/Dermatamyocistis. I am so glad our little girls are becoming so close, and that we have each other to lean on... Not to many are aware of AutoImmune Diseases.

Before I start babbling on and on just know you have one more friend if you get a walk here in Charleston, and you bet I will be calling pushing for one also. I might not be able to actually walk it but I will be on the sidelines... Cheering....

I know how hard it is to fight what seems a neverending battle but just know you have alot of support to help get you and your family through it....

So on a lighter note hears a big hug to ya all from well down the street.... : 0 )

Hang in there