Saturday, March 29, 2014

A Fun Announcement!!

OZL is getting a baby brother this summer!

The Changing Face of Arthritis

We did a little photo shoot this morning to update my blog profile picture - to show how much OZL has grown and also to show off my baby bump! I thought it would be fun to share my last few profile pictures all in one place so you can see the changing face of arthritis!

October 2012; OZL 4 months old

April 2013; OZL 11 months old

 March 2014; OZL 22 months; 22 weeks pregnant

And one more just for fun...

Making Biologic Medications Accessible And Affordable

While I was excited to try the medication my rheumatologist suggested, I was shocked to discover that I would need to pay nearly $1,000 a month out of pocket! Learn more about my efforts to support The Patients’ Access to Treatments Act - legislation that makes medications more accessible & affordable. And find out what you can do to help!

Thursday, March 27, 2014

The 2014 Arthritis Foundation Advocacy Summit

We just got home from a whirlwind trip to Washington DC, where our family participated in the 2014 Arthritis Foundation Advocacy Summit. As part of the conference we were able to meet with the offices of our Senators and Representatives to talk about some very important arthritis advocacy goals. 

So that I can reach a wider audience (which will only help us continue to make a difference on these important issues) I will primarily be sharing my experiences from the trip over at - so stay tuned for links! But in the meantime, here are some photos from our trip! 


Friday, March 14, 2014

The RA Pregnancy Chronicles: Life Without RA Medications

The RA Pregnancy Chronicles is a series of posts that share my experiences being pregnant while living with RA. This post was written during Week 6 of my second pregnancy.

Being a parent is all about sacrificing your own needs for the needs of your children. It’s a challenge that every parent faces. But, for those of us living with chronic illnesses like RA, there are all sorts of extra sacrifices, difficulties, and doubts we have to face.

Thursday, March 13, 2014

The Lego Movie

As I mentioned in my last post, APL recently accepted a new job. On Tuesday he had training for his new job - but it only lasted half a day so he was done with work by noon. OZL was at school, and even though the purpose of sending him to school twice a week is so that I can write, my contract with recently ended and I have not found additional writing work to replace it yet.

So on Tuesday my husband and I found ourselves with an unexpectedly glorious afternoon to spend together with no work to do and no toddler to take care of. And what did we decide to do with our limited grownup time together? We went to see an awesome children's movie!

We both enjoyed The Lego Movie very much - and I'm positive that APL is already counting the seconds until OZL is old enough to truly appreciate the wonderfulness of legos. (Sadly, at 21 months, even duplos are still a bit too advanced for OZL to put together and they do not hold his attention for very long. But as soon as he is ready all the duplos me and my brother and sister ever owned are sitting in our basement playspace!) The movie was very fun, extremely clever, and had some really lovely messages.

After just having seen The Lego Movie, I was even more excited to see this post from a blog called RARainbow (a resource blog for young women living with (Juvenile) Rheumatoid Arthritis). She makes some really good observations about the movie and how it applies to life with a chronic illness. As she points out, in life (as in legos) "the possibilities to create are infinite."

Friday, March 7, 2014

One Last Appointment

When I was originally diagnosed with RA in 2008, I was a law/grad student at the University of Colorado. At the time I only had student health insurance, so it was an ordinary primary care doctor at campus student health who first diagnosed me with RA. Then I was not given a choice about which specialist I would go see - my insurance simply provided me with a referral to a local rheumatologist, and I followed the instructions I was given. 

Luckily, that particular rheumatologist turned out to be a completely amazing doctor. One who took the time to listen to my concerns and work with me to find a treatment that I was as happy as possible with. And although my insurance has changed several times in the last five and a half years, I have always made the decision to stay with this rheumatologist. In fact, he is the only rheumatologist who has ever treated my RA.

But yesterday we said goodbye.

My husband recently accepted a new job that will require us to make the switch to Kaiser insurance. And, with Kaiser insurance, I will need to see a Kaiser rheumatologist. I will also need to see a Kaiser primary care physician, a Kaiser OB, and OZL (and the new baby) will need to see a Kaiser pediatrician - but these changes don't actually feel that difficult to make. Changing rheumatologists, however, feels a little bit scarier. It reminds me of what things were like in the beginning, when I was full of doubt and confusion. The good news is, with the help of my first rheumatologist (and all of the writing I have done on this blog!), today I do feel more confident in my own abilities to advocate for myself and my own needs. So hopefully I will be able to form an equally good relationship with my new rheumatologist.

In the meantime, I want to thank my first rheumatologist from the bottom of my heart. He has helped me through so much over the past five and half years. He supported me through my diagnosis and during the long and frustrating search for a treatment that worked for me. He listened to my concerns and provided me with resources to help me successfully complete grad school and law school. He always took my opinions into consideration before making recommendations and he (and his staff) provided me with samples of new medications to try so that I could get started right away while waiting for my insurance paperwork to go through. He provided me with advice and support while I planned my wedding and throughout my first pregnancy. He helped me deal with adapting to motherhood while living with RA. And I really don't think I could have done any of this without his support.

And now it's time for our family to move on to the next exciting chapter of our lives! New job! New baby! New doctors! I'll be sure to let you all know how it goes!

Tuesday, March 4, 2014

Hydrocarbon Hucksters: Lessons from Louisiana on Oil, Politics, and Environmental Justice

Some of you may have been following my story long enough to remember that one time that I went to law/grad school and earned myself some fancy degrees. (You know, "that one time," a.k.a. that extremely difficult five-year period of my life in which I got diagnosed with RA right in the middle and struggled find a treatment that worked, retain my identity, and finish what I started. That time.)

In any event, lest you think my degrees currently do nothing but gather dust and cost me monthly student loan payments, I am excited to announce the publication of the second book I have been lucky enough to co-author!! And this time my name is even on the cover!!

This book has nothing to do with the topic of this blog, but it is a big achievement in my life so I wanted to share
Hydrocarbon Hucksters: Lessons from Louisiana on Oil, Politics, and Environmental Justice

Hydrocarbon Hucksters is the saga of the oil industry's takeover of Louisiana--its leaders, its laws, its environment, and, by rechanneling the flow of public information, its voters. It is a chronicle of mindboggling scientific and technical triumphs sharing the same public stew with myths about the "goodness" of oil and bald-faced public lies by politicians and the captains of industry. It is a story of money and power, greed and corruption, jingoism and exploitation, pollution and disease, and the bewilderment and resignation of too many of the powerless. Most importantly, Hydrocarbon Hucksters is a case study of what happens when a state uncritically hands the oil and petrochemical industries everything they desire. Today, Louisiana ranks at or near the bottom of the fifty states on virtually every measure related to the quality of life--income, health, education, environment, public services, public safety, physical infrastructure, and vulnerability to disasters (both natural and man-made). Nor, contrary to the claims of the hydrocarbon sector, has there been much in the way of job creation to offset all of this social grief.

The authors (one a scientist, the other an environmental lawyer) have woven together the science, legal history, economic issues, and national and global contexts of what has happened. Their objective is to raise enough national awareness to prevent other parts of the United States from repeating Louisiana's historical follies. The authors are uncle and niece, a generation apart, who have melded their conclusions from two separate tracks.

Dying to read more? You can totally buy my book on Amazon!!  ~;o)

Monday, March 3, 2014

The RA Pregnancy Chronicles: My Second Pregnancy Begins

The RA Pregnancy Chronicles is a series of posts that share my experiences being pregnant while living with RA. This post was written during Week 4 of my second pregnancy. 

I am excited to share stories from my second pregnancy on I can’t promise that my story will always be uplifting, but I can promise that it will be honest. And though it may not be an easy task, I can promise that I will show it is possible (& wonderful!) to start a family while living with RA

"At Least It's Not Cancer"

“At least it’s not cancer.” On the one hand, I wholeheartedly agree. On the other hand, I think comments like these unfairly downplay the seriousness of RA & other autoimmune diseases.