Friday, November 20, 2009


Drexel Hill, PA
How has your condition impacted you?  I was diagnosed with Grave’s disease when I was 30.  At the time my endocrinologist told me that having one autoimmune disease opens the door for other autoimmune diseases to develop.  I didn’t take that information too seriously at the time.   Ten years later I’m managing 5 diseases.  

Rheumatoid arthritis is usually my main health concern, but all of the diseases can kick my butt from time to time.  It’s not always easy to manage multiple prescriptions and doctors appointments, along with daily life especially when joint pain and fatigue make simple things like walking and driving difficult. I had to learn how to rest and be kind to myself.  The hardest thing has been realizing that I need to ask for help now and again.  I still struggle with that the most.
When I was diagnosed with Rheumatoid Arthritis in my late 30’s I thought it was the end of the world.  Now I know it’s just a different way of living in the world.  I have a good life even though it isn’t the life I envisioned and it did take me a while to accept that.

What would you want people to know about your condition?  Whenever someone hears that I have autoimmune diseases they always say, “But you don’t look sick” or “you’re too young to have arthritis”.  I want people to know that having an autoimmune arthritis is different from osteoarthritis.  It can affect people at any age, including childhood.  According to the Arthritis Foundation,  “Rheumatoid Arthritis  affects 1.3 million Americans. Currently, the cause of RA is unknown, although there are several theories. And while there is no cure, it is easier than ever to control RA through the use of new drugs, exercise, joint protection techniques and self-management techniques. While there is no good time to have rheumatoid arthritis, advancements in research and drug development mean that more people with RA are living happier, healthier and more fulfilling lives.” 

There is a lot of information out there...some good and some bad.  I’ve joined the Arthritis Foundation and Buckle Me Up! Movement to help spread awareness of autoimmune arthritis disorders like RA & Sjogren’s Syndrome.

What would you want to tell someone who is newly diagnosed with your condition?  It is important to find a doctor that you feel comfortable with and can have open and honest communication.  Don’t be afraid to ask questions about recommended treatments and holistic alternatives. I also recommend seeking out support groups or counseling because managing a non-curable disease can be overwhelming at times.  Know that you are not alone and don’t be afraid to ask for help.

Thank you so much Kelly!


PJ Taylor said...

Kelly writes: "It is important to find a doctor that you feel comfortable with and can have open and honest communication. Don’t be afraid to ask questions about recommended treatments and holistic alternatives."

This is so important! Having a doctor who has your best interest at heart and has great empathy is so key to managing RA.

So odd I'm reading this when I was just considering switching doctors. I recently called my RA doctor on a private number given to me by her receptionist when booking an appointment and my doctor answered herself. She repeatedly demanded "Who gave you this number!" I was horrified and angered by her response. And that's not the kind of relationship I want with someone helping me this frustrating and complicated condition.

So thank you to Jodi and Kelly for giving me the kick in the butt I need to find a different RA doc!

Jodi said...

PJ - it's funny what happens when we read about someone else who has the same problems that we have, isn't it? definitely makes you stop and take a step back and look at how you are acting/reacting. good luck with your doctor search! (i'm in the middle of one as well!)

Cybergabi said...

Jodi, these portraits are so gorgeous. You're doing such a great project there!

leedav said...

I can't believe she is 40! What a great smile.

Aunt Teena said...

I agree with Gabi. You are doing a great job educating the rest of us. And the people you have photographed for your project - they all seem to put their best foot forward. No whining. They all seem to look for the best in life.

Jodi said...

thanks gabi!

lee, isn't she beautiful?

thanks teena. educating those who are unaware is a big part of the project.

ki.p said...

I know I've learned alot reading thru this blog, thanks to Jodi, and everyone, for sharing.

And the portraits are stellar, I'm sure each of your participants feels beautiful after viewing them :)

Lolabellaquin said...

Jodi thanks for developing this project. It means a lot. Georgia and I had a great time with you at Rittenhouse Square! She loved those pigeons!

Thanks to everyone who made such nice comments, too! I'm thrilled to know someone doesn't think I look 40!!! ha ha ha!!


Jodi said...

thanks ki.p. i sure hope they feel beautiful (or handsome, as the case may be) after seeing them.

oh, kelly, thank you again for participating! i still need to edit some of the photos of you & georgia to send to you. she is such a cutie pie!

and seriously - you do not look 40!

Lolabellaquin said...

Jodi....I would love to see those pics of Georgia. She always looks way better than me!! ha ha!!

Rob Moore said...

Kelly. It was nice meeting you too. Your photo looks awesome!
Jodi you're doing a wonderful thing here. Thank
you so much!

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