I think the one thing that I thought a lot about this weekend would be the many faces and stories behind the many invisible diseases that are out there in the world. Often times we talk about the patient, the medication, our doctor appointments, our rheumys, and many other health care professionals that are often included because these diseases often are connected to many other systemic issues. We talk about the side effects, the pain, the fatigue, the joints that don’t work or hurt so bad, and so on.
This weekend I had the pleasure of talking with a rheumatologist who is interested in hearing more about the patients themselves, and trying to understand that many different (sometimes less spoken about) things that we face. These areas could be goal setting, managing your disease at a level far deeper than “just making it.” As we talked I had the realization that too often we might overlook the importance of remembering who we are as people, our story matters.
So I posed the question on my page and I loved the responses. I loved getting to hear the stories of some pretty awesome women! Two women battled JRA from the time they were babies, we are talking 18 months or 2 years old! Could you imagine that….I don’t think I can even imagine how that life would be. Their perspective of “living life” is far different than mine. I had a life…granted it was painful (no doctor could tell me why) but it wasn’t until my early 20’s that my life took this turn. I asked these women about their childhood, having to take medications as little girls, having to go to school (elementary, middle, and high school) in pain….gosh their lives has been different than mine. Their stories were so cool! I loved that they shared snipits of their journey of life to today, again making me realize…how much I love hearing the story behind the face of this disease. We have many dreams, we have many different lives, some of us work, some of us don’t work, some of us have children, and others we have furry kids. We have different dreams, different aspirations, different goals, but we are all fighting each day to get up and make it through the day. We are fighting to not be defined by our disease but to define the disease by our lives.
I appreciated the conversations this weekend, with the many different people who took the time to talk to me. THANK YOU! I would definitely encourage you (if you haven’t already) to check out this site. Pizer has been doing some interesting research on patients and RA. I have found their global survey very interesting, check it out (http://www.pfizer.com/news/press_kits/RA_NarRAtive).
I like you tonight, have had a rough day. Little sleep last night, and major pain. I’m hoping that when I see my rheumy here in a few weeks we can find a bio/mtx combo that does help. Unfortunately I don’t think that is Enbrel, but there is hope for another combination. Today has definitely been a long long long day but I’m still here, pushing through to the next day! That is what we have to do…fight, get up, and try again.
To tomorrow, I hope it is better! And if you are like me tonight, please don’t stop fighting. I know this world seems so lonely….I realized last night (or really this morning) at 2:00a.m. how lonely it feels to be in so much pain that you can’t sleep…but the world is asleep (unless you are in the other side of the world…then you are wide awake 12hrs ahead! 🙂 ). Those hours that drag by…those hours test your mental, emotional, spiritual, and physical strength. A war is fought during those many nights, a war of letting go and giving up or hanging to the thread and telling yourself YOU ARE WORTH IT, and you can still live a life and do great things. If you are in the boat of fighting that war tonight, I hope you realize that you are truly worth it, share your story (even if you just write a note to yourself) so that you know you are the face, you are the story, behind this disease!