Being Your Own Advocate

When you’re living with a chronic illness, you have to learn how to be your own advocate. You have to be an advocate when dealing with doubting and questioning friends and family. You have to be an advocate when dealing with a significant other who struggles to understand. Perhaps greatest of all, you have to be an advocate for yourself when dealing with a medical team larger than those seen on Grey’s Anatomy.

My medical team consists of a primary care provider, an anesthesiologist (pain specialist), a neurologist, a rheumatologist, a physiatrist, and a physical therapist. This may seem like a lot of people, but it was actually 2 doctors larger until a few weeks ago. After some unsatisfactory treatment and disappointing appointments, I have fired my pain management psychologist and physical medicine doctor. Since I’m going to have to deal with fibromyalgia for the rest of my life, I don’t have any time to waste with professionals who are not going to treat me with the respect and care that I deserve. Even though I was quite fond of my pain management psychologist and she helped me through a lot, there were a few issues and I couldn’t wait around to convince her of what I was saying.

The importance of being your own advocate is even more important when you have an “invisible disease” like fibromyalgia. When you have cancer, there are blood tests that can confirm your diagnosis, and physical symptoms that show that you are sick. Fibromyalgia, however, cannot be confirmed by any tests and there are no outward signs of the disease. This makes not only diagnosis difficult (it often takes years), but friends and family often struggle with accepting that you’re sick at all. My family, for instance, is not very supportive. I have a mother who thinks I’m faking it all to get attention, a sister who wonders why I can’t just “get over it,” and a dad who cares but doesn’t really ask questions.

When I was first diagnosed and tried to discuss my disease with my family, I was hurt when they didn’t believe me. The pain I felt was real, why couldn’t they see that? It was because they COULDN’T see it. I didn’t have a port or a bald head or IVs to “prove” my sickness. Over time, I came to accept that I didn’t have anything to prove. I live my life for me, and I invite those along on my journey with me who love me for me, and who enrich my life. I get to pick and choose who I allow into my healing journey and when I started to incorporate that mindset into my daily life, I was so much happier and I felt so much better all around.

For everyone else out there battling an invisible disease, do not despair! Be your own advocate, and the loss of control that you feel from having this disease will start to come back, a little bit at a time. And for those times when you’re feeling sad and alone, I’m here for you. You’re never alone. We’re all in this together!

Check out 'Because of Katie' by Karen Gerstenberger

When I was going through staff orientation at Camp Goodtimes, they told us the story of a camper named Katie Gerstenberger. It was through that story and subsequently getting to know her mother, Karen, that I got to know just how much of an impact that Katie had on Camp Goodtimes, and on everyone that she came in contact with.

Now, I could tell you all about Katie and her family, but I never had the honor of meeting this courageous young woman. Who better to tell the story of Katie and her family than her own mother?

Karen Gerstenberger just released her much-anticipated book about Katie and their family, 'Because of Katie."

You can buy the book on Amazon, just click here. And if you live locally, Liberty Bay Books will be hosting a book-signing on Friday, March 2nd at 6:30 p.m. at The Loft Restaurant in Poulsbo, Washington. Karen will be giving a brief talk, answering questions, and signing books afterward.

You should also follow Karen's blog to stay up-to-date on all the latest news!

Finding clarity among little bald heads and port scars

There are pros and cons to every job. Positives and negatives. Ups and downs. Good days and bad days. When you choose to dedicate your life to working with children with life-threatening illnesses, the highs and lows of the job are literally instances of life and death. So why would I choose to put myself through that emotional turmoil everyday? Because I feel called to help these kids.

Out of Tragedy Comes Clarity

After walking with the Strauss family through Gloria’s battle with cancer and subsequent ascension into Heaven, I lost a lot of things: my blind faith in God and my overall purpose in life, among them. But over time, tears washed the thick mud of grief and mourning away and clarity emerged: I knew what I wanted to do with my life.

As difficult as it was to watch Gloria in and the other kids on the hem/onc floor at Seattle Children’s Hospital battle these evil diseases, I felt myself pulled to them. I wanted to do something, anything to help. If I could make a child smile while they were getting chemo or recovering from surgery, it would be one more smile towards healing.

At Seattle University, I studied Nonprofit Management and tried to learn everything that I could about the ways that nonprofit organizations worked so that when I graduated, I would be ready to jump in and do some good. I volunteered with many different nonprofits, and was an intern with the American Cancer Society.

The American Cancer Society runs a summer camp called Camp Goodtimes for pediatric cancer patients, survivors, and their siblings every summer on Vashon Island. This is a camp that Gloria loved, and I wanted to go and volunteer the first summer after she died to honor her memory there. All of the staff members get a nickname, and I chose “Neon.” (Gloria’s nickname was “Glow” and I wanted something similar.) For a week I played games, went swimming, and had whipped cream fights with all of these kids who had either battled or were currently battling cancer (or were a sibling of a fighter). Additionally, a lot of the staff were former campers themselves, and it was amazing to hear their stories. It was an emotional week, as I got to hear stories about Gloria from her camp friends and former counselors. It was also special because Gloria’s younger sister, Maria, attended camp and I got to spend some quality time with her and her cabin. Even though I only attended camp for one session, I’m a member of the Goodtimes family for life. With the nature of the camp, unfortunately it is too common to hear of campers and staff who lose their battle with cancer. Although they are gone, they are never forgotten. The legacies of these and all others will live on at Camp Goodtimes forever: Gloria, Katie, Panda, Risa, Codi…

Panda

Risa

Katie

Walking the Talk

After graduation, I got a job in development at Woodland Park Zoo. I got to apply my fundraising skills and learn more about the ways in which the various departments within a nonprofit interact with each other. During my time at WPZ, I also began volunteering as a Wish Granter with the Make-A-Wish Foundation. This filled the space in my heart that ached to be filled by helping these extraordinary kids.

Being a Wish Granter has affirmed what Gloria’s situation made me realize: that I’m called to walk with kids with life-threatening illnesses. My two Wish Kids I’m working with now are amazing, beautiful, resilient spirits and I’m SO blessed to be able to make their wishes come true.

I can only hope and pray that a job opens soon and I can work full-time with Make-A-Wish or Seattle Children’s Hospital, as I know that is where I am called to be. For now, I will keep my magic wand in hand and sprinkle fairy dust over my Wish Kids, making their dreams come true and hopefully giving them an experience that will enhance their quality of life and give them memories to last a lifetime.