Health blogging as a patient is tough
The last month has been hard. Who am I kidding? The last five years have been brutal.
The RA is always the same: Just a little worse than yesterday. Like so many of you, I look for ways to make lemonade out of this bitter pain. That’s why I started health blogging.
A few weeks ago I had to be away from the blog for a week due to illness. Afterward, I pushed myself hard to try to catch up on comments and emails. Then, as I wrote the last email, AOL decided to reprint an interview that I did last year for Health.com. Life is funny, isn’t it?
You guessed it: Hundreds of emails, comments, and requests poured in.
I can’t catch up – partly because I have this thing that puts me at a disadvantage: I’m sick. At least one day per week is spent traveling to medical appointments. Lately, it’s two or three.
Don’t you feel like this too? RA makes it so hard. Sometimes, it’s overwhelming and I tell KB, “I can’t do this anymore.” I look at what I want to accomplish and how slowly I think I proceed and I say, “I just can’t do it.”
Determined to catch up, I replied to 46 personal emails yesterday. That was about half. Please read carefully: There is no complaint. I learn so much every day from patients who tell me their stories.
It never fails: Reading sad stories, I find strength and determination to improve our lives. In other letters, I receive hope and comfort to share. Either way, God uses others to fill my cup to go on with new resolve and optimism. God is good. He knows what we need.
There are so many things I want to do and plan to do to fight for RA health. Blogging about RA is the start. I truly believe that we can make a difference together and that we have already had an impact.
Below is an excerpt from one letter. The writer wanted her story to be shared to help others. It helped me and I hope it helps someone else.
An email blessing from health blogging
I also would love for you to post this if you like in a manner that would protect my name. … I find I no longer have that swagger in my high heeled black boots. They have been replaced with the most unattractive pair of shoes that I have ever seen. lol. …I write this on my day off as I come back from the rheumatologist in tears over the outcome of my appointment. I am a 46 year old wife and mom who has battled RA for over 10 years, however, last year did me in. I have used everything from Enbrel to Humira. I am now on Orencia only to find at my visit that I am getting worse and need to start Rituxan.
With each time I am told that I have to try a harder drug, I cry into a towel in a room, research like mad on the computer, cry more, and then toughen it up and do what I must. I swear at that moment that I just can’t do it anymore, I can’t hear anymore, I can’t, but something turns the switch back on and says, “Get it together, this is what you have to do and you will have peace with it.” I remember crying over Enbrel… I find your articles and research a constant encouragement when I think that I have gone mad… I am a professional that is loosely holding on to her profession and I just wanted you to know that as I just walked in the door and switched on my laptop, I went right to my favorites (RA Warrior). Kelly, you are an inspiration, you write from the heart, and you remain positive which is what I try to do with a disease that I call the ultimate betrayer. One minute you think your having a good day and the next you are flat on your back. Or, you get the comment that you look so healthy that nothing could be wrong with you. Guess it’s all smoke and mirrors what will be drained from the good old synovitis in my joints today at my next appt in a few hours on my day off.
Today I felt like giving up as I drove out of that hospital parking lot. What I mean by that is just giving in to the disease and what people think I should behave or be like. I always, always get hope from reading your work. Thank you I tell you with a tear in my eye. I know however, that I will be my normal joking self in a day or two after the initial shock of the news today and the fact that my spirit is so strong that I actually thought that I was getting better. Not to worry.
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