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Wednesday, 23 September 2015

To the Newly Diagnosed Day 3


It's been thirty years since I finally found out what was wrong with my health, and the news that I had rheumatoid arthritis (RA) was devastating to me. Despite that, what I would most want to tell people with a new diagnosis of a chronic disease is "It gets better." 

Not to say that your diagnosis will go away, but it is possible to develop strategies to live with it and to feel happy and successful. Your life won't be what you expected of course, but that's not uncommon no matter how healthy you may be.

Just this week I saw the chart below posted by Cheryl Koehn on Twitter, with the comment "Knowing about this would have helped me at RA diagnosis."

She called it a great summary of the stages of grief in death, arthritis or other illnesses. I agree with that, though I did not believe in the up-side of the chart for many years.

When Cheryl developed RA she was a former Olympic Volleyball player. I imagine her plans for the life she expected were totally derailed, but she continues to be an achiever in many advocacy and awareness areas, with a book called Rheumatoid Arthritis: Plan To Win and also as the President and Founder of Arthritis Consumer Experts which publishes the Joint Health newsletter every month. 

Coincidentally I also saw Lene Andersen's film, "Live Bold, Live Now" this week at Cure Arthritis. She considered herself a "worst-case scenario" because of the consequences of her Juvenile Arthritis and RA. Now she is passionate about sharing her story to show that it is possible to live a happy life despite arthritis. She is now a photographer an author working on her second book at the same time as being the lead writer on the Health Central RA site.  

Both Lene and Cheryl are great examples of the Loss Adjustment side of Cheryl's diagram, the up side that I couldn't imagine when I felt so much isolation and loss of power due to my "chronic life." 

For me it was a great online support group, solid encouragement from people on my care team, and social media that made a big difference in my life and extended my horizons. 

Here's a big plus for people with a new diagnosis - the treatments for RA are much better now than they used to be. Below you can see my Walking Gallery jacket highlighting problems in getting a diagnosis, and the first treatment suggested to me. It's written under the aspirin bottle "Take 12 aspirin a day and come back in 3 months." (Hint: It didn't work)


Walking Gallery Jacket

My advice to you is to set new goals, do whatever you can to help yourself adjust to your new reality and try to have fun. It's been great reading all of the other blogs on #RABlogWeek.

4 comments:

  1. The grief thing is tough! I've recently made an appointment to see a psychologist to help manage mine. I've been feeling like I've been letting people down lately and I hate that feeling and I need help mastering it.

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    1. It's great you're getting help - I hope you get along with the person you've chosen. That makes all the difference.
      I have been so pleased that people are asking me to do things that I said yes to everything. Now the chickens are turning into vultures and I live in fear I will miss a deadline.
      Good luck

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  2. Annette: When I was Dx'd I turned to the internet as well. I wanted to know how long I might work. Of course I never found that, but what I did sort of find was some misinformation and some great information. Coming from the diabetes background I was expecting a larger online community related to RA. When I wished to start writing about Ra, 2012, I found more resources and they were so much better. I hope Folks enjoy #RAblog week and will participate in future years. I know with diabetes, #Dblog week is a time honored tradition that has helped a lot to build that community.

    rick

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    1. I found the Yahoo support group and am still sticking with them. Some years ago I found the morbidity and mortality stats on a website - that threw me for a loop. I have since stopped worrying since advances in treatment have to be making a difference.
      You can see it in the numbers of hospital beds devoted to RA patients. One hospital used to have 40 - now there are 6 in our whole city

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