Somehow it's already June again - making it six years since I was originally diagnosed with RA. So much has changed since that very first year!
While
I certainly do not enjoy living with RA, I have have grown to embrace
my life with this disease and I am always trying to do what I can to
make something positive come out of it. Our family is very involved with
the Arthritis Foundation through volunteering and advocacy efforts. I
have even managed to find somewhat of a career writing about my life
with RA. This year I wrote for Answers.com and RheumatoidArthritis.net. I hope my contributions to all these resources can help others who are living or struggling with RA.
This year has been a busy and important one. After OZL turned one
last May, APL and I started trying to conceive our second baby with the
goal of reducing the overall amount of time that I would need to be off
my RA medications. We struggled a lot with this process, which led me
to start speaking a lot more openly about the difficulties of maintaining your sex life
while living with RA. I think that sex and intimacy are areas in which
many people with RA and their partners must struggle. There still is not
nearly enough attention payed to these issues but I am doing my best to
contribute. As we worked on our own issues this year, I also did a lot
of research and wrote several articles about sex and working with your partner. And, eventually, APL and I were able to achieve our own goals and get pregnant with baby #2!
In September, APL rode for the second time in the California Coast Classic
to raise money and awareness for the Arthritis Foundation. This time we
made it a family affair! OZL and I traveled along with the ride as
volunteers and APL's brother, his brother's girlfriend, and cousin also
participated in the ride. It was an amazing experience and hopefully
someday we can be a part of it again someday.
In December, I was the honoree for the Denver Jingle Bell Run/Walk for Arthritis.
While there are a lot of resources provided for kids with JA, and a lot
of resources provided for older adults with RA or OA, I often feel that
the young adults - who are just starting out with their lives, careers,
and families - get lost in the middle. So it was an honor to be able
to represent the young adults out there living with RA.
In March our family attended the 2014 Arthritis Foundation Advocacy Summit,
where we went to meetings on Capitol Hill to help advocate for
arthritis. In particular, I told my story to my Senators and Congressman
in the hopes that they would support legislation to make biologic medications more accessible and affordable.
There were also plenty of the usual fights with insurance and pharmacies
this year. Because what would life with a chronic illness be without
these extra headaches?? APL also got a new job, causing us to switch to
Kaiser insurance and me to see a brand new rheumatologist for the first time since my original diagnosis.
I know there will be even more changes and challenges in the upcoming year. While this second pregnancy has been extremely difficult for me, we are really looking forward to the addition of another little boy to our family this August! I also hope to be able to continue making a difference in the RA community.
From This Point. Forward!
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