Missing In Action

If you are a regular here, you may have wondered what the heck is going on. I’ve been missing in action lately. Two days turned to four, which then turned into a week. Before I knew it we were working on almost THREE weeks without a post. Life happens. Here’s what has been going on with mine.

Thankfully, things on the Juvenile Arthritis front have been very quiet with both kids. In fact, our last trip to clinic in LA was the best one ever for my older son, and my younger one showed no signs of active disease at this time!  That definitely makes me less apt to dive into JA posts. When we get a break from this disease, we want to take it- across ALL aspects of our lives, and since this is a JA blog…. well you get it, right?

Also I have been very busy behind the scenes. Some great companies and individuals have offered some products for me to review for you, from thermal heating pads to anti-inflammatory cookbooks. I don’t want to make this blog about reviews, but I do like to share products that we have used and that have been helpful to us in our JA journey, and to give them the real test, I do have to wait until my kids have some symptoms again. As much as I would love to believe that both boys are in some sort of remission, most of us who have been in this for the long haul recognize that JA is a roller coaster, and things usually come back up (or down) after a little time has passed.  I still remain hopeful, with just a smidge of  reality thrown in.

I attended the SITS Women Get Social/ Bloggy Boot Camp late last month, and I am working on lots of ideas I was given there to improve the blog for my readers. I admit this has slowed me down some, since I am trying to get better about making an editorial schedule and taking my own pictures (with a new camera!) As I have gotten older, I see that there is a little more of a lag with my learning curve than before, but stay tuned, and I think you will like some of the changes! Hopefully, they will be worth the wait.

Our “break” from JA didn’t last too long because we needed to get back to business on the advocacy and awareness front. I wrote a few posts for Everyday Health. My boys were chosen as the 2014 Chicagoland Youth Honorees for the Chicagoland AF Walk To Cure Arthritis. Exciting right? During my virtual break, we did a photo shoot, attended the event kickoff at Timber Lanes, and started raising funds  for the event in our area.

 

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Early in the shoot.

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“Hey, this is FUN!”

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“Ok, are we done yet?”

We would love to have you join us, or find a walk in YOUR area. Of course if you would like to donate and leave a message of encouragement for the boys, they would love to hear from you on our team site, appropriately named  “Joint Effort.”

 

Also in the very near future, my boys and I are heading to Washington D.C. for the annual  Advocacy Summit!  We have been prepping for weeks, calling and emailing our U.S. Senators and Representatives to let them know about our visit and initiatives for legislation that will impact all Americans who suffer from any form of arthritis. Its an amazing opportunity, and very important work. If you haven’t been and are curious, I will be blogging live from the summit to share the experience. You can still join in, even if you aren’t traveling to D.C. through the Virtual Summit (just follow the link) and have YOUR voice be heard! Better yet, consider going one step further and  signing up to be an e-advocate. In 5 minutes or less, you can continue to make an impact throughout the year by emailing or calling your congressman when there is a “call to action.” In the meantime, you can see what’s going on via social media by searching for the hashtag #FaceArthritis.

So as you can see, following our many calls to action has resulted in being “missing in action” here, but that’s ok. Part of living with Juvenile Arthritis is actually LIVING with Juvenile Arthritis. The emphasis needs to be on the “living” rather than on the illness, and that is what we have been doing the last few weeks. Forgive me for the break in my virtual presence, and know that it was just because I was out there,  on overtime in the real world for a bit.  Thanks for stopping in, and don’t forget to check back next week for updates in Washington D.C.!

Superbowl Sunday

Superbowl Sunday.

Its a day that my family approaches with nervous anticipation.

Twice, my husband was a player in the Superbowl, and those are the good memories. Even though we had one win and one loss. Other times, we watched as we almost always knew someone playing personally, and had someone to root for. Recently we watched Clay Matthews of the Green Bay Packers earn his ring, and I couldn’t believe it. The first time we met Clay was when he was visiting the family area at the Tennessee Titans, coming to see his uncle Bruce play alongside my kids’ dad. He was in the 8th grade back then, the same age my son is now.

But Superbowl Sunday also means something very different to us as well, and it has nothing to do with football. Its an anniversary, and not a very good one. It happens to be that on this day four years ago, my older son started his most intensive struggle with Juvenile Arthritis, and was admitted into the hospital for the first time. It was the beginning of one of the toughest, if not THE toughest time in our lives. It was the day that everything was divided into “before” and “after.”

The following year, strangely, he was admitted again on Superbowl Sunday, for other complications arising from his disease.

The third year, on the same day, we held our breath not because of the game, but because he was in another intense flare. Even though we aren’t the superstitious type, it started to feel like a sinister pattern had emerged. Superbowl Sunday was not a day we looked forward to.

But you know what? He made it that year without being admitted. It was a little touch and go, but HE won, nonetheless. Even though it wasn’t easy, he managed to skate by without a hospital admission.  This year? Well, he has been at a friend’s house and plans to follow up with a Superbowl party at another’s. There is no “curse,” there are no reasons not to breathe…he is here, and he is WINNING. He is beating JA and its hold on him, especially on this day that we can’t help but think about it.

Another friend of mine posted today that it was her son’s “Diaversary”  yesterday, that is their anniversary of his diagnosis with type 1 Juvenile Diabetes. They celebrate it.

You may be asking yourself, “why on earth?” but she can tell you much better than I:

I know it may seem strange to celebrate the day he was diagnosed with Type 1 Diabetes, but here is why I decided to do it last year. It is a time in which we could look back and see the progress that he has made in a year. We went from anger and fear to being on the road to acceptance. Small steps for the entire family. Last year he was a little hesitant to celebrate this day, but this year about 1 week away he asked me the date and he said well that means there are only 7 days left… I said to what he looked at me and said my Diaversary. So this day has become important to him. I am not only proud of him and the progress he has made but his sister who loves him dearly and how she cares for him and watches over him. I am proud of them both.

This is where WE are now with Superbowl Sunday. More than game day, it proves to us that we are back in the game. No matter what JA throws at us, we have all come so far, and we will be the victors, not this disease. It will not win.

Today Superbowl Sunday didn’t come with a cloud over our heads. It is the big day in the same way as it is in every other American household. It doesn’t matter which team comes out ahead tonight. I already know who is winning.

No Rain Today.

They say when it rains, it pours… but today we are in Southern California, and its only sunny skies. No rain today. We had been suffering through quite a run of bad luck, just in general and definitely when it came to the kids’ JA. My younger son’s disease was starting to ramp up, and […]

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Crud.

Crud. Its both an explanation and a description today, even though I saw it coming. In the back of my mind I was anticipating it. I mean after all, we flew through 3 airports (during the holiday season,) experienced a fifty degree temperature change, and have had our rumps parked at the hospital  clinic with […]

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