Monday, July 27, 2015

Hope Grows Here

I really didn't know what to expect when it came to the conference. 
Sure I had been reading every single email that I got from the foundation, I had looked at the schedule so many times that I knew what was on it, and I was super excited to meet new people.

When the opening session began, I was blown away by every single person there. 

Let me set the stage for you:
There were 1700 people there. 
700 of those were children.
Every single person there has a story. 

That's a lot of people!
That's a ton of stories.

I've shared mine on here and if you go back far enough you'll find it.
But just imagine a convention center full of stories just like mine. 
It's just crazy.

See when we go through our every day life we tend to be the special ones. 
We stick out because we are different (well, to those that know about our arthritis at least).
I like to think of ourselves as unicorns.

But this was like a convention just for unicorns. 
How cool is that?!

I love camp because it shows us that we aren't alone and we can share our stories with campers.
This national conference amplifies that feeling by thousands. 

You get to talk to people who have been on the same meds as you, who have experienced the exact feelings that you have about nearly everything, you share the same concerns, fears, and guilt. 

While we all have this one big huge think that's the same, we are also very different. 
We all have different reactions to medications, we have different forms of arthritis, and we are all involved in different levels of the arthritis foundation. 

I LOVE this though because we can compare notes on what crazy thing our doctor wants us to try or we can make fun of the fact that our family puts us in bubbles so we don't break but the truth is we are already so messed up! 

I really enjoyed learning from the breakout sessions as well. I learned so many cool stats, how I can get more involved, how genetics plays a part, and much more. 

If you stay with me, for the next few posts I'll be talking about a lot of cool things that I learned in those sessions. 

The theme for camp was "Hope Grows Here". You'll see in the picture below how those who attended put what they hoped for on ribbons. It was amazing some of the things the kids hoped for. 

I'm so thankful that I got the chance to meet other young adults, kids, and even parents who traveled from around the country to come.

One of the young adult leaders (shout out Dr. JHo) rode a tandem bike from New York to Orlando in 3 weeks. She has arthritis too by the way,  

I could never imagine doing something like that.
I mean I'm sitting here on my couch wishing that places delivered ice cream because I'm too lazy to go get some.

But that's just one example.
There was a lady there who I'll talk about later who was diagnosed at a young age and she's now blind and both of her daughters have been diagnosed. Her husband came in and we had a relationship session where it got pretty serious.

Then we had a cool up and coming actress/Broadway star who not only sang for us, but came to nearly every young adult session and shared her thoughts and stories. 

There was a pediatric rheumatologist and even a NASCAR driver who both came in and shared their stories as well. 

It's seeing how this disease affects everyone and how we really come together as one to help find ways to bring awareness to it that's truly inspiring. 

There were so many people that wanted to come this year but couldn't make it. Because of that, the foundation decided that there will be 2 conferences next year so more people can come. 
That's awesome!

Our goal, well at least the young adults group, is to shed light on the fact that young adults want to get involved. We want information, we want to help, and we want more chances to meet others like ourselves. 

That's slowly happening thanks to those in leadership at the foundation and the 2 Jenns who helped run the young adults program. 

It all starts with someone making noise, sooner or later, someone will hear you. 

So if you didn't see my social media sites, here are 2 little trivia facts that are teasers for the next few posts to come.

There are 5 states in the US that do not have pediatric rheumatologists.
How do kids in those states get help? Well if they don't travel to another state, they don't get the help they need. To me, that's uncalled for.

24 states don't consider Arthritis a chronic condition. 
So tell me 24 states, what do you consider it? 

This needs to change and by advocating together, we're one step closer to changing it.

Thursday, July 16, 2015

It's not me, it's them.

I just got news that my rheumatologist will be leaving me soon. Now to those of you who don't see a doctor as regularly as I do, you may find this information boring.

But for me, this is a pretty big deal.
I'm kind of upset about this.
It's like I've been broken up with....
Yes that's a tad bit dramatic, but hear me out.

You meet this new doctor who will then become your person.
You tell them your problems, they listen to you, and then they do everything in their power to help you out. 

Granted, you have to pay each time you see them....but that's beside the point. 

It's the whole getting to know them, you telling them about your medical history, everything you are allergic to (which for me is a lot), and then figuring out the level of trust that you can build that doctor/patient relationship with. 

See with this last doctor, she was pretty new to the field which made things super easy because she trusted me when it came to my health. It's really hard to find a doctor like that. 

For those of us who have health problems, you would think it would be easy going through the motions and explaining your story to a new person each time you change doctors or meet someone new on the street.

But it's not.
It's tiring and repetitive. 
Don't get me wrong, I love talking about my arthritis and will gladly do so for anyone, anytime.
But when you're sitting there filling out the paperwork for the umpteenth time, then You get to go explain it to the's's hard to explain. 

Why can't you just have the same doctor.
It was foolish of me to think that I had finally found someone almost in the same ballpark as my pediatric rheumatologist. 

He is amazing! 

You're probably thinking wow, she's getting really into it over a doctor...
But when you've had as many rheumatologists as Hogwarts has had defense against the dark arts teachers, it becomes a problem.

Side note: Becky Schaick gets credit for the Hogwarts joke

I've had 4 rheumatologists since leaving my pediatric rheumatologist 6 years ago. Now one of those was due to insurance changing and one of those was due to the doctor being a complete witch, but the last 2 have been because the doctor decided to leave. 

While whining about having to find a new doctor might seem juvenile, it's more about whining over the fact that I have to go through the process of trusting someone, getting them to realize my health history, and then building that relationship again.

Oh my gosh it's just like a boyfriend. No wonder I'm single ;)
So I'm going to go drown myself in ice cream and remember the times my doctor came to see me in the hospital.

I'm totally kidding, I'm not thaaaattt upset. 
Just be thankful, if you're healthy, that you only have to see one doctor...maybe once a year. You have a higher doctor succes rate than anyone that has a chronic illness will ever have. 
Be proud of that :)

Stayed tuned! The Juvenile arthritis conference is next week and I will for sure fill you in!