Summer Fun & A Weekend In The Woods

Summer is finally in full swing and I'm thrilled to report that my body is keeping up with all of my plans! I just got my monthly Orencia infusion last night, so hopefully it will get even better now! The weekend before this past one was spent at John's family's cabin in the Adirondacks - one of my favorite getaways. John's dad built the cabin completely by hand and I'm consistently amazed by its beauty. It's nestled in a serene spot right beside a beautiful river. You can even hear the water running as you're falling asleep. Undoubtedly, this is one of my favorite sounds.

I spent some wonderful and much-needed quality time with John's parents (Margaret and Bob), his sisters (Sara and Laura), his cat George and his sweet pup Belle. We had perfect weather the whole weekend and enjoyed basking in the sunshine together. As always, Margaret was so thoughtful and cooked me delicious gluten-free meals, separate from the rest of the family. Between my vegetarianism, my gluten-free diet and my various stomach issues, I must be the world's most difficult house guest and it means the world that she cares to accommodate me. By night, we roasted marshmallows around a big fire and watched movies, including Uncle Buck (which I could watch a million times).

I also recently travelled to Boston to see my best friends! I stayed with Vicki (one of the best buds a girl could ask for) at her adorable new studio apartment. We enjoyed a very relaxing weekend of girly activities and hanging out with friends. I saw lots of Colby girls and explored Cambridge and Harvard Square. I'm always enthralled - and occasionally terrified - by the street performers in Harvard Square (I'm thinking mainly about a life size marionette). We ate some fantastic food, including a brunch at a vegan/gluten-free restaurant. This is where I discovered that I love scrambled tofu eggs - who knew? 

My posts will become more regular now. In between these summer adventures, I've been helping with various family medical issues. Unfortunately, I'm learning first-hand just how hard it is to watch someone you love in pain (which makes me appreciate my loved ones that much more). I've also officially moved into my new apartment with John and we couldn't be happier! We just got internet hooked up, so I'll be posting about that very soon...

Love,

Maya

Spotlight On Robin Shirley: A Motivated Beauty!

I've been lucky to connect with Robin Shirley, a girl who knows what it's like to grow up with pain. Robin was diagnosed with Juvenile Rheumatoid Arthritis at 11 years old. She has learned a tremendous amount from her chronic illness and writes a wonderful blog called The Truth About JRA. Her writing shows how strong, passionate, and driven she really is. She discusses her unique treatment approach that focuses mainly on nutrition. 

Enjoy her answers below and stay tuned for a future post about Robin's latest project - an incredible conference she has organized to benefit her fellow patients. You wont want to miss it! 

What is the year you were first diagnosed? How old were you? 

I was diagnosed in 2000 at 11 years old (I think...who wants to remember that year anyways!)

What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?

There would be so much to say! But first I would listen to what they have to say. What children with arthritis need is someone to listen to their fears and concerns. For the sake of answering the question though, I would encourage them to see their disease as a teacher and ask themselves every day what they can learn from this experience.

Please explain a bit how your condition affects you. 

My most noticeable symptom is joint swelling and pain. This is the hardest to cope with because it is the most visible to others…so that brings up all the self doubt and emotional stuff. I have been able to control the swelling mostly through nu

trition design, but stress and negativity really make me flare. I have to make sure I laugh plenty and relax every few 

hours (just gaze out the window or cuddle up in a comfy chair) and avoid those who have a pessimistic outlook on life. The disease hasn’t changed since I was diagnosed except that the swelling of the joints will ebb and flow at different times. I used to have horrible fatigue and aches, but that subsided when I changed my nutrition and lifestyle.

Where do you get your strength?

The best answer that I can give is that I get it from having faith that the future will be better. I know that is hard for some to understand or accept. It is a very personal thing and a lot of people who deal with chronic illness go through periods of faith and periods of depression. I have been lucky to have a good family support system and I know which food and vitamin deficiencies can cause depression, so I make sure that I watch out for that and stay on the optimistic side of things. 

Also, I am so stubborn and I won’t listen to anyone who fears the worst. That is the last thing you want to surround yourself with! I also use daily positive affirmation cards from Louise Hay.

What are you most proud of?

I guess it is the way I have been able to build a business while dealing with chronic illness. It has been rough at times, but I think it is so important to have a vision when you are chronically ill. It keeps your mind in the future.

If you could send one message to medical professionals around the world, what would it be?

Oh wow. I’m glad you asked this question. I would tell them to remember that they are consultants and that they should treat their patients as clients who are seeking their educated opinion. They have no business making decisions for patients or threatening patients to undergo certain treatments. And to patients I would like to say: We all need to see our doctors as educated consultants, listen to what they say and then go do our own homework. “Freedom means responsibility, that is why most men dread it." - George Bernard Shaw

Thank you so much Robin! 

Love,

Maya