RheumaBlog

Same dragon, different day.

Post 5, National Health Blog Posting Month (30 posts in 30 days): Five things that changed my life, for better or worse, as a patient, a caregiver or a health activist:

In general (because a patient, caregiver or health activisti is first an individual, a regular person living her life as best as she can):

1. Giving birth to and raising my daughter. This was huge.  Not only was the commitment physical–nine months of pregnancy and everything that comes with it, including morning sickness, body-shape changes, and the realization that there was another person growing inside me with a life of her own–but it was also a serious commitment to responsibility. Giving birth to a child was one thing; caring for that child and meeting her needs day in and day out for the next 18 or more years was, to me, monumental. How can something like that not change a person’s life? It was–and continues to be–incredible.

2. Getting and living with RA. Before I had rheumatoid arthritis I coped with the same generic maladies and illnesses that most people get: colds, stomach bugs, childhood illnesses like measles, mumps and chickenpox, cuts and scrapes, sprained ankles, bumped heads, bee stings. Pain and sickness happened, but they always went away. Disability happened–the sprained ankle, etc.–but I healed. Every illness or malady I had until I was 31 years old either went away, healed or was treated and cured by my family doctor. So it took me quite a while after being diagnosed with RA before I understood–and accepted–the fact that my doctor couldn’t cure me of it. And not only that, there were no other doctors, anywhere in the world, who could cure me, either. Suddenly I was living each day with pain in one joint or another, disability because of the inflammation, swelling and pain, or both. RA didn’t wait for me to accept it–it just moved on in, and in ways both obvious and subtle, my life changed because of it. Left without a choice in the matter, I adapted and took on the challenge. It’s one that hasn’t ended yet and won’t until the day I die.

3. Discovering a talent for and love of writing. I’ve always been artistic and have loved to draw and paint from the time I was a small child. In school, I liked English and did well with it, and when I was given assignments that included writing, I enjoyed them and generally got good grades. I also loved reading, and when I was a young adult I decided to write a spy novel (my favorite to read at the time). I wrote and wrote and wrote in my spare time (I was new mother and was in the Air Force at the time), and finally produced my novel. It was rejected by publishers more times than I want to admit, and eventually it ended up at the bottom of a box in a closet. But I did it. And I while I did it I discovered how much I enjoyed writing. To me, it’s like painting with words.  A few years later, in Germany, I got a job as a writer/editor with the U.S. Army Public Affairs office on the post my husband was assigned to, and it was there that I started learning journalism. I loved that job, and I’ve worked as aprofessional journalist–a writer and an editor–ever since. I still write fiction in my spare time, too. One day I might actually finish another novel.

Lifechanging events I’ve had as a patient:

1.Finding a good rheumatologist. The doctor who first diagnosed me with rheumatoid arthritis was an internal medicine specialist. He was a U.S. Army doctor–a captain–and the closest actual American rheumatologist was a four-hour drive away. Dr. C did his best to treat me, but he didn’t have the best tools at the time. After five years of severe, active disease, pain and disability, years during which no drug I was prescribed had any effect on my RA (with the exception of narcotic pain relievers), I stopped seeing any doctor for it. Several years later, my RA went into spontaneous, drug-free remission. I was symptom and pain free for about six years, and then the rheuma-dragon woke up and started chewing on my joints again. By the time it started to get bad, I’d been laid off from my job and no longer had medical insurance. In desperation, I applied for medical care through the VA and was accepted, and within a few weeks had my first appointment with a VA doctor. She, in turn, wasted no time in referring me to the VA rheumatologist I still see today. He’s excellent. And I’m sure that without his care, my RA would be much, much worse than it is. That, to me, is lifechanging.

2. The Internet. When I was diagnosed in 1987, the only access I had to information about rheumatoid arthritis was what my doctor told me. He was informative, but I really didn’t even know what questions to ask him about the condition. There was a very small library on the Army post where I worked, so I looked there for more information–and couldn’t find any. The librarian found the address for the American Arthritis Foundation for me, so I wrote them. They sent me a pamphlet that included about three paragraphs about RA. The rest of the pamphlet was about osteoarthritis and other, lesser known varieties. I already knew the basic information in the pamphlet. It wasn’t until long after I was back in the U.S.A. and the Internet came along that I learned more about my RA. And when Google was created…well, I was able to learn far more than I really wanted to know. The Internet is such a gift. People who are diagnosed with this disease today have all the information about it they could ever want right at their fingertips, almost instantly. That’s something to be thankful for, because we can much more easily fight the enemy we know than the one we don’t. The Internet has also allowed me to blog about my RA. And that, in turn, has gifted me with the ability to communicate with other people who also have the disease. For the first time since being diagnosed I was able to  “talk” with others who knew exactly how I felt and what I was experiencing. I’ve made many dear friends within this online community. I’m no longer alone with my RA.

And that is the most lifechanging thing of all.

 

3 thoughts on “Lifechangers

  1. Lana says:

    Great post and great life changers – all of which I have come across myself. Raising children is challenging but raising children when you live with chronic illness is much more than just challenging. It is an amazing accomplishment and even when we think we cannot rise to challenge, we rise above. My kids are a reminder of that every day. Getting to know and live with RA – that has been a stumbling, hit and miss process. Every day, I find something new that I learn with and deal with. While I wish RA and fibro had not come in my life, they have changed me in ways that I can be proud. I am still trying to get the rheumy thing down but you are absolutely right about the internet.

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  2. Thank you for sharing your life changes 🙂 I so agree with you about them all and especially about the internet. You are an inspiration and that is for sure!

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  3. Melissa says:

    Thank you for posting this- I really relate to #2 of being diagnosed with RA. This is something I am still struggling to understand, that at 28 I will have a disease forever. It helped me to hear you struggle with the same concept.

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