Monday, March 29, 2010

Keeping a 3 ring binder

You might call it prep work, I call it packing procrastination.

We head to Boston, soon, to see Dr. Stephen Foster @ MERSI for an anniversary appointment of sorts (its been two years) & work on a weaning strategy from her meds.
I am working on Charlotte's 1 page spread of medical history. I want to hand it over to the fellows who will ask me all sorts of detailed questions. I hope to to make their work easier but also get me off the hook for rattling off such a roll call.

I can't possibly remember all of the appointments, diagnosis, and drugs that Charlotte's been on in the past 2 years at the top of my head. Even if I am boosting the amount of ginkgo tea I drink, its just too many details.... (PS you can grow your own ginkgo tree... this book is amazing!)
One of the best pieces of advice I ever got was to start a 3 ring binder for Charlotte. And so I wanted to share that piece of advice for the blog. I have it tabbed 4 ways:
1. labwork
2. correspondence w/ Dr's
3. Timeline & Meds
4. Information
What a great resource its been for me to help me recall bits of information or past conversations. When this disease hit, its was like drinking from the firehose. Only by the beauty of time, can I digest & appreciate more the info that was shared & gathered.

And now... I am off to write my list of questions for Dr. Foster.... and then pack.

Friday, March 26, 2010

You Are What You Eat

Two years ago our house became corn-syrup free after listening to a Nutritionist from my favorite local grocery store talk to parents of arthritic children. We learned about the detriment of this highly processed sweetner, thickner for our children but it also applied to us.
This past fall, Charlotte contracted e.coli 0157:h7 & we went diving into the pool of knowledge about animal agriculture. Now, we will never look at dinner the same way again.

And food has been a complete evolution for us & continues to be. If we are what we eat, then are we helping Charlotte control the inflammation in her body by feeding her anti-inflammatory foods? What are those? What foods cause inflammation?

I recently visited a natropath because I wasn't feeling that "connected" to my internist & my OB. I was feeling a little dismayed after getting a recent physical & having the dr. dismiss my commitment of weight loss by telling me that its all about less calories in... Oh but dont listen to her, she had just had a bag of cheetos for dinner (seriously. that's what she said.).

My new natropath immediately drew blood for food allergies because food intolerances can lead to endocrine problems (ie metabolism). And wouldn't you know it... all dairy, eggs & beans! I had been eating eggs daily (great source of protein) & cottage cheese! And cheese... But it didnt come as a surprise, I know how I feel after eating pizza... and frozen yogurt.... and...
So I am looking into new recipes, new meal plans & working with a nutritionist to map out the road ahead. Ya, its too much to do alone, I can use the help! She's showing me how to have more a "rotation diet" of getting carbs (grains) from different sources, how to view my meals, the wonderful world of nuts, seeds & berries (daily) & how to get my needed calcium from greens (collard greens & kale have become new best friend). And the continued learning & food evolution... just a continual education.
The connection between inflammation and heart disease, arthritis, and other chronic ailments has become increasingly clear. Many food allergies and poor dietary choices overstimulate the immune system and cause inflammatory responses that erode the body’s wellness and pave the path for ill health. Based on her naturopathic practice, Jessica Black has devised a complete program for how to eat and cook to minimize and even prevent inflammation and its consequences. The first part of the book explains the benefits of the anti-inflammatory diet with an accessible discussion of the science behind it. The second half contains 108 recipes. The author offers many substitution suggestions and includes a healthy ingredient tip with each recipe. Most of the dishes can be prepared quickly and easily by even novice cooks. A week of sample menus for summer months and another for winter are included, as well as a substitutions chart, allowing readers to modify their favorite recipes to increase their healing potential.

Wednesday, March 24, 2010

2 years, already?!

Several friends have asked recently, "How is Charlotte doing?" And can you believe its been 2 years since the arthritis induced uveitis battle began?

For Spring Break we are headed back to Boston. Back to see Dr. Stephen Foster, uveitis specialist, for his strategy on moving forward. (Charlotte playing with playdoh at age 2.5 when we last went to Boston - notice her steroid cheeks?)

Charlotte's eyes have been quiet off of Pred Forte (steroid topical drops) & the combination of Methotrexate (arthritis go-to drug, an immune suppressant) & Remicade (a TNF protein inhibitor that treats the underlying cause of arthritis).

We've talked to our Pediatric Rheumatologist about his thoughts on an exiting strategy & they are: Continue to stretch Remicade intervals out further (how far? how many weeks? & then stop!) & see if Methotrexate can hold it on its own. Then stop Methotrexate to see if her body is holding strong.

Remicade is still not FDA approved for Charlotte. We go through a LOT of hoops with insurance for every treatment she has (every 4 weeks for a year then every 5 weeks, then every six). Lots of back & forth with the insurance company, lots of paper printed of "this is not a denial but....." A lot of wasted time calling, complaining to insurance, getting them to reverse & then calling the hospital to make sure they got the ok from our insurance to go forward.

Follow this circus hoop: Our pediatric rheumatologist is approved by our insurance but the hospital he works at is not. Therefore by his administering the medication at the hospital, we jump through hoops to have it done under his supervision.

Do you know every Remicade treatment Charlotte has costs $4k!! Which means that these 2 years... not exactly accurate estimates would guesstimate approximately over $72K for Remicade alone spent on Charlotte for 2 years. Methotrexate is $10 a month, inexpensive in comparison!!

I was calling & sending letters to our Congressman about the health care reform. Our Congressman was holding out until the last minute. His VM was always full, so he got emails from me. He finally voted YAY.

We are GRATEFUL for healthcare reform!! Here's a scenario I no longer have to worry about. Charlotte goes to college. She leaves my supervision. Stress, food choices, growing up throws her body into an arthritis flare up. She's 22 and no longer on our insurance because dependents are kicked off at 21. Could we EVER afford Remicade if she wasnt on our insurance? NEVER. The cost of Remicade for Charlotte has been equivalent to a down payment on a house!

Health & healthcare is a HUGE deal in our house. You never know what you got till its gone... right? Well, same goes for the fact that you never know how well you have it with well children... There are families who work hard, contribute to society, give back to the community & will go bankrupt without healthcare reform because their child has contracted an autoimmune disease. We are so VERY grateful for our insurance & for the new reform.

And for more politics, we will eat at Harvard Squares: Mr. Bartley's. Take a read of their menu, what a hoot! (For those of you who know me well or have read the food journey our family has been on... I know, I know... what WILL I eat here???? Where is their beef from??? Is it pasture raised? Might go with the veggie burger option.... :)). Then we are headed to the JFK Library on the campus of University of Mass, Boston. I am planning the restaurants/shopping/activities now :) Any suggestions?!?!