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January 2005 Last night I was thinking about a friend of mine who had recently passed away of colon cancer. Dr. Peter Singleton from Stanford, a teammate of the Arthritis Huddle, a retired Colonel in the Army, and a really good friend – died two weeks ago in his hometown of Atlanta Georgia. Even though Dr. Singleton was one of the most well respected doctors in his field – a Rheumatologist with dual primary specialties in both internal medicine and PM&R – he always insisted on being called Peter. We traveled together to countless cities – Peter, Joe Namath and myself – to talk to doctors and patients. Sometimes there would be two lines of doctors, one line to get a picture and autograph from Joe, the other line to meet the medical legend – a man who devoted his life to helping other people, and a man who just wanted to be called Peter. One thing I’ll never forget was when we were in Pittsburgh about a year ago, it was after a long event and we were having a drink and catching up. Casually and hesitantly I mentioned my hands were hurting and as I displayed them to him a look came about his face of shock and horror. He gingerly grabbed my hands, turned them over to examine them, adjusted his glasses, and looked up. He said "Seth, with these radialgraphic changes, I don’t know how to tell you this…but…it’s not good. I have something for you, it’s a needle, but it’s upstairs. Let me go get it." And he quickly stood up and left the bar – leaving me stunned, confused and growing very anxious. Five or so minutes passed and Peter returned with a smile on his face saying "I don’t think anyone has ever been so nervous while I went to the bathroom. Let me see those hands again" and he slapped me five and we had a good laugh. He really had me going. Not only was he a good doctor but he had a great sense of humor. I’m really going to miss him. This morning I woke up thinking about my hands. When I opened my eyes and stretched out my arms I got a glimpse of what my hands will look like in 20 or 30 years. And it scared me. When I was growing up I would notice that every now and then when I looked in the mirror I’d see my older brother or my father. And if I tried hard enough and squinted, I could see them looking back at me in the mirror. It was a game I’d play when I was lonely or had nothing else to do. But this morning as I awoke, I saw my grandmothers hands holding themselves and wondered if that’s what they’ll look like down the road: fragile, gnarled and full of ache. That time hasn’t arrived yet. I only got a sneak preview of what it will be like. But it isn’t going to be that way for a long time. I don’t want ugly, achy hands. I did nothing to deserve them. Waking up and seeing my hands in the shape they were in was a difficult way to start an otherwise very good morning. |
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 Creaky Board
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 Seth's Diary - January 2005
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| Author | Topic: Seth's Diary - January 2005 |
| CJ Feature Staff |
posted 01-03-2005 14:58 ET (US) 
This article is for responses to Seth's January 2005 entries to his diary. http://www.creakyjoints.com/sethsdiary/200501.shtml |
| emmie |
posted 01-18-2005 21:34 ET (US)
I know all to well how that feels. Except for me its my feet. I will see all these little changes. At first i was like ok, I'll just paint my toenails and keep the focus on them instead of my bending crocked ugly toes that have a scar that looks like railroad tracks on my feet from surgery. I remember just being so sick of crying cause of it that one day at thearpy I just started laughing cause no matter what my thearpist did she couldnt get one of my toes to straighten out and stay that way on its own. She let go and it just went right back to overlapping the other one so i just started to laugh. I guess that was just my way of dealing with it. The past few doc. visits I noticed my doctor really looking at my fingers. I guess it comes with the territory though scary as it is to be like me 21 and worrying about not how my hair is going to look the next day but how my joints are going to look. Hope it gets better for tou Seth : ) Just remember to keep smiling. Emily |
| Stormy |
posted 01-19-2005 09:52 ET (US)
I experience the same traumatic thing. I remember my grandmother placing a broom up through her closed fingers and making an attempt to sweep the floor. It is really frightening to think that this is what is likely to happen to me. Her hands were so deformed, I never remember seeing her fingernails until they replaced her finger joints with plastic (I think it was back then). I remember visiting her in the hospital and seeing her nails for the first time, painted. Within six months, they were drawn right back to where they were before the surgery. |
| swimmergirl |
posted 01-31-2005 11:04 ET (US)
Seth: I know we often say things without thinking fully about our audience (I am totally guilty of this all the time). However, I feel compelled to respond to the comments you make about your hands and what you fear they will look like down the road. I can understand your concerns about the pain--I have been there and that is certainly legitimate. But when you say you don't want "ugly" or "gnarled" hands, you need to know that you are buying into a very damaging body image that has plagued those of us with JRA who have had "ugly" "gnarled" hands since we were five (at least in my case) or for some even earlier. I am sick to death of people commenting on my hands or the hands of other people with arthritis and how "deformed", "ugly," and "gnarled" they are, and I come here in the hope that some of that offensive rhetoric has no place. I am disappointed. It was a comment that I am sure had no malice behind it, but you need to know how it may come across to JRA'ers who have dealt with the social ramifications of joint "deformities" all their lives and simply want a little more respect than having their very real battle scars labeled as visually unappealing. I think you have very interesting things to say in your entries and I wish you the best of luck, but please understand that this is a sore spot for me and many others who hear these comments more often than we would like and would love to see a change in the way our bodies are described. cheers, swimmergirl |
| AuntieM |
posted 01-31-2005 21:09 ET (US)
Seth, what you are feeling is natural and most of us have experienced some level of sadness and embarrassment due to deformities we may have. I, too, have deformed hands and feet, accompanied by surgical scars. But the surgeries have helped and I try to concentrate on the many other ways I have been blessed and thankful that I don't have something much worse than arthritis! Remember that if potential friends are turned-off by deformed joints, they are not worth having as friends. Most people will be sympathetic. Also, you are young, and treatments now days are far better at slowing the progression of the disease--so keep a positive attitude! |
| courts |
posted 02-02-2005 14:30 ET (US)
swimmergirl, i just read your comment to seth and thought that maybe if you could read the entry with a different perspective, it would ease your frustration. seth writes his journals and puts them online because he knows that there are other people who are going through things that he is going through. and the fears that go along with our various chronic illnesses are as real as the physical pains that we cope with everyday. as much as the appearance of your hands might be a trial for you, our fears of things to come (like seth's fear of a changed image) can be a trial for each of us. if you had the choice today to have healthy-looking hands, would you choose it? based on what you wrote, i would guess that you probably would. and someone who has healthy looking hands with the very high probability of that changing in the near future can fear the possibility. what we fear most are the things that are very real possibilities and seth is more commiserating with the idea of having a (yet another) change in body image more than anything else. we have all had changes in body image and we have to take each one as it comes to us. perhaps one of the creakies has had a joint replacement and you haven't yet. if you wanted to come online and say that you were nervous about possibly getting a joint replaced, you wouldn't be trying to make the other creakies feel bad. and you also wouldn't be insensitive in expressing your own fears. you would simply be talking from where you are in your disease process right now and we're all in different places. i know we all have sore spots. for example, hearing people thirty years older than me talking about how they don't want to get older and get arthritis gets me very agitated. but i kinda feel like seth is as creaky as any of us and having fears just like we all do. afterall, that's why creakyjoints is here... so we can share and support. i don't know if that helps because some emotions just don't yield to any logic or conversation, but i hope that it might help a little. =) |
| carolinagirl |
posted 02-05-2005 08:49 ET (US)
I understand why someone might be offended by Seth's comment about deformed hands, but he is entitled to his fears. Lord knows, I had my own very real fears when they were testing me for RA, lupus, scleroderma, etc..... Like courts, I get upset when people make comments about not wanting to grow old and start getting arthritis. One that really got me was the time in college when a roomie had a question about arthritis, and I suggested that after talking to me, she chat with a friend of mine from this site. (She was in an accident, and was concerned she might get arthritis when she got older as a result of that.) She chatted for a minute, and then said, "wait, he has arthritis, so he's probably 85 years old. Eeeeeeeewwwwwwww!" I just looked at her and said, "I have arthritis; am I 85?" That gave her pause! |
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