Posted in Advocate, Health Activist Challenge, NHBPM

#NHBPM Day 14 Elevator Blog


Today’s prompt:  Elevator blog. If you were in an elevator with someone and they asked about your blog. What would you tell them?
Make a version for a 30 second elevator ride.
Make a version for a 1 minute elevator ride.
Make a version for a 2 minute elevator ride.

I really like this prompt as it gives me an opportunity to explain my blog to those of you who don’t know it that well.  Of course, the time thing is an issue.

30 minute elevator ride

My blog is about my life with Rheumatoid Arthritis and Fibromyalgia and my life despite chronic illness.  When I was first diagnosed I didn’t quite understand that I could have a normal life with RA and Fibro but after much research, experience and strong will, I have found my medium.  As a result, I want others who struggle with similar issues related to chronic illness to understand that while they may be set backs, your life is not over. A lot has happened in my life since my diagnosis over three years ago, and I don’t just blog about RA and fibro, I blog about other setbacks and other situations because I am only human.  I think that I owe it to the people who read my blog to see more than just an advocate for arthritis and fibromyalgia but I want them to see that I am just as normal as they are. Normalcy is something that so many of us with chronic illness struggle with and while we may not always feel normal, our experiences still are just that.

One minute elevator ride

One day I awoke to my life changed.  After years of struggling with pain and other mysterious symptoms, I received more than I expected – two diagnoses two months apart.  I had both rheumatoid arthritis and fibromyalgia. From the moment I received my first diagnosis, RA, I knew my life would change.  At the time, however, I thought that change would be for the worst.  Here I was 32 years old with a newborn and a nine year old who would need their mother for a long time and I felt like I had just been stripped of everything that made me human. I had two diseases and there was no cure for either.  I also found myself with a realization that I could not work fulltime, spend time with my kids, be sick, attend law school, and a whole lot of other things I had planned on doing. 

The longer I lived with RA the more I understood that if I wanted to continue to have dreams and live them, I had to take a slower pace.  I also had to realize that living with chronic disease did not mean that my live was over. It meant that that some things had to change including my expectations and my lifestyle.  That realization was my wakeup call and at some point I realized that I wasn’t alone in these feelings.  Others felt them too and what took me nearly a year to figure out would be easier for others if I shared my story and that is what I have done – several times a week. I have had setbacks due to RA and fibro and due to life in general.  I think about all the people who reached out to me when I was diagnosed and if not for their experience, I am not sure how I would have made through the first year after diagnosis but I did.  Fellow sufferers and bloggers reached out to me through their blogging about life with chronic illness and when I saw that their lives were close to normal, I knew that mine would be too.  Therefore, I blog to reach out to others struggling with the same anxieties and fears.

Two minute elevator ride

My RA and fibro diagnoses came over three years ago but I had symptoms for many years prior.  Days after giving birth to my son in September 2008, I awoke to the inability to walk and use my hands.   A week later, my family doctor suggested rheumatoid arthritis and referred me to a rheumatologist. Two months later, the rheumatologist gave me a second diagnosis: fibromyalgia.  I felt both relief and defeat at the same time.  I was relieved because I finally had an answer and defeated because there was no cure.  Here I was 32 years, a young mother and I felt like I was 80.  My blog started out as my way to cope.  A year later, it became my pedestal because I had finally told RA and fibro who was boss.  Three years later, I continue blog to help those struggling with the same issues I dealt with when I was first diagnosed and those I continually deal with as RA and fibro patient.  The difference is that three years ago I was scared but three years later, I advocate.  I am still scared but I have learned to fear is merely a setback.  I support, I speak up, I educate and I advocate and for me, helping just one person feel less alone and more educated means I had accomplished so much.  

My message to the people who read my blog is simple – learn to cope and find support.  In the beginning, coping meant that I just need to get through the day but these days, coping means thriving despite RA and fibro.  As for support, I know that the message we convey to others in our lives is important.  If we educate ourselves about our conditions, it makes it easier to express how we are feeling to our families, friends, and medical providers.

I thrive despite chronic illness and I made a decision a while back that for everything RA and fibro would take, I would take something back. People always give you advice about not letting the disease define you but I tell people that the disease does define you because it forces you to change your life to accommodate it.  Your life becomes about making choices that focus around living with chronic illness and sometimes, the best thing you can do to thrive is understand that some things are just out of your control.  However, that does not mean to everything is out of your control. You always have it in your power to respond positively and fight back progressively. Some more advice – Don’t sweat the small stuff and understand that your expectations about yourself and for others in your life have to change.  Count your blessings every night and think about all the things you have accomplished despite chronic illness.

With my blog, I know that it is so important to reach out to others who understand what you are going through but it is also important to let others reach out to you. From personal experience and as an advocate for both fibromyalgia and arthritis, I know the power of advocating for yourself.  My message is simple: learn all you can about your conditions, express your needs and concerns clearly, open up about the how the disease affects you, learn to cope and manage your disease and make a choice that your life isn’t over. I hope that I can convey these things clearly and allow people to see that I am not the exception to the rule but that I am just like them – struggling to find answers.  Life gave me lemons and I made a choice to throw them back and that is my story and I am sticking to it.

I am also human and that is why there is more to me that just RA and fibro.  I lost my bother last year to a rare form of cancer, one caused by asbestos exposure.   As I continue to advocate, I pray for the strength to advocate for others affected by mesothelioma and while right now, I am not strong enough to do this, I will be someday.  When that day comes, I will advocate to the best of my ability but for now, I advocate for fibro and RA in my brother’s memory.  Advocating in his memory allows me to the strongest I have ever been and so when it comes time to stand up for those affected by asbestos exposure and against those who knowingly expose people to asbestos, I will be ready.

This post is post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9JI If you want to participate in this post, leave a link in the comments to your post.

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