How strange to find myself posing a very different question from when I was first diagnosed. In the beginning it was “Why do I have it?”, “What did I do to deserve this?” and any number of victim type questions. Because as I have said before, I felt as if I was an innocent bystander suddenly sideswiped by RA for no reason. For a long time it felt only negative, that there was nothing positive in it, just pain, deformity and frustration along with many bouts of crying.
The first time I felt something positive coming from RA was when I was Speaker’s Bureau Coordinator and also a Self Help Course instructor as well as training new instructors for the Connecticut Chapter of the Arthritis Foundation. The people in the Self Help classes were great and they often told me how much they were helped by the class and the information. It was also gratifying when they said I had helped them too. I would tell them I was just like them, the only difference was I had been trained to run the class. They also helped me and were a bright spot in the week. I remember one particular day when I wasn’t feeling well and really didn’t want to go. By the end of the class I was feeling better and was very glad I went.
As the Speaker’s Bureau Coordinator, I learned how to speak to groups and be fairly comfortable. Often people would ask questions, plus say how much it meant to hear from someone who had a form of arthritis. Speaking in front of people has always been an agony for me, but after I spoke a few times, I really loved doing it. I injected humor and my own stories to keep it from being just straight facts – though if time was short, my stories were jettisoned because they came to hear the basic facts.
I realize I personalize whatever I write; that made it difficult to write for business. I decided at one point that I was going to have fun with my business because all that “Life is real, Life is earnest” stuff was stressing me out. When I started writing this blog, I found such freedom to say whatever I wanted in the way I wanted. I still have to check out my business websites and rewrite them so they sound like me. Maybe it is just that I have found my voice.
Just as in my Mom’s dementia, I swear there is a funny side to RA – if I don’t laugh I will go nuts. Sometimes it sound like sick humor to those who don’t have a chronic illness, but those who deal with one 24 hour a day understand. What I have noticed as I look back at all the stuff I have dealt with is the odd bits that pop into my head – especially in hospital as well as outpatient tests. Thank goodness I wrote them down when I was writing a journal, because for the life of me I can’t remember any of them. Looks as if I will have to check through them and see if I was as clever as it seemed at the time. (Another set of posts!)
I have acquired medical knowledge, though only as it pertains to me. I am an expert about my experience and symptoms, not anyone else. There are similarities but I would not presume to tell anyone else what they should do. I have more knowledge than I ever wanted to know – so it has contributed to my education.
I learned how to conserve energy – mine. I have also learned patience, not easy and there are lessons cropping up when I least expect them. I am a late bloomer, though I didn’t realize some of the knowledge would take this long to make sense. I can’t say I am always patience, I get antsy about things at times and wonder why I don’t “get it”. I keep remembering that when I am ready, it will make sense to me and the less I agonized over it, the better.
Let’s face it, I get positive feedback from people – I have had 2 or 3 women tell me I am their hero and inspiration – rather heady stuff. Often people say they admire me, they don’t know I do all that I have done. Another comment is how positive I am while dealing with RA. My first thought is they haven’t seen me in my oh-poor-me-osis days or my hurt-like-hell days and I am a whimpering mess. What I feel is that I am of help and use to them in different ways – that feels so good. I have also learned that I may never know when I have been of help as I am going about my life – I don’t have to have each one of those people tell me. A little feedback once in a while is great.
Looks as if this is going to be Part 1 because there are a lot more things to write about that I have gained. It just hit me that I am doing this blog because of RA. It has been a great release for me and I so appreciate the people who comment, like and follow my blog and let me know they enjoyed what I wrote. I didn’t expect to write it; I had this urge pushing and pushing me until I started the blog and I have enjoyed it for the past 2 1/2 years.
Tell me what you think, I would really like to know.