I’m sure if I had a therapist, he/she would find this all very revealing.

I got a very touching email yesterday from a woman who has been following my blog, almost from its inception. It was very humbling to hear from her. Thanks A! She too has PVNS, and although I do not know the details of her situation, I am sure she has gone through a lot too and I hope she is doing ok. She wrote to me following the 6/29 post… the letter I wrote to PVNS. She thanksed me for my courage to post it…I so appreciated hearing from her and hope she writes to me again. In her email she mentioned that at times she has found herself crying while reading my blog… I am not sure what prompted the tears, but I am touched… that something I shared could connect with someone on that level…

Her email reminded me that I really do not know how many people read my blog. I see from the cluster map that people from many places have at least viewed the blog, but I don’t know how many people visit it regularly. Her email was a humbling experience for me. I wonder about whether or not people see me as egotistical… after all I write about myself, often times at great length. It makes me wonder why I think my life and the happenings in my life are so important that I need to put it out there for people… and even more so, believing that people are actually interested in my life enough to read about it… but then I back peddle and tell myself that it’s not about what other people think, because it is my blog and it is about me… but then I wonder if that confirms the egotistical piece mentioned before… this is proving my craziness to many I am sure…

My blog is something… I created for two reasons… as a place to vent and as a way to reach out to other PVNSers. I created this because I felt like ‘Debbie Downer’… you know.. that person whose answer to the question ‘how are you’ always has a dramatic negative response. I felt like I was constantly complaining about my pain and limitations and felt like my negativity was better placed somewhere else, besides on the shoulders of the people in my life. …in addition to wanting a place to vent… I had searched for information on PVNS and found a discussion board that made me even more afraid than I already was… every site I found was scary… I felt like the diagnosis of PVNS meant that my life as I knew it was over… and that I would surely lose my leg from amputation or worse, the pvns would become malignant, would spread, and kill me… So I wanted to put some kind of perspective out there that showed that PVNS wasn’t the end of the world.. which is ironic, because at times, I felt like it was… In some way I hoped that by writing about it, I would in some way be able to ward it off…I kept looking for other information, for someone’s experience with this crappy disease that did not have dire results… and I couldn’t find one. I also couldn’t find anyone else who had PVNS that offered any hope …. So a blog seemed better than simply keeping a journal… I thought, hoped that other people with PVNS would find it, and be able to relate.

Recently I took issue with a couple of other blog buddies.. well not with the buddies, but with their sentiments…which in actuality is taking issue with myself…. I eluded to it before, in a previous post… .. but… I have processed it a bit and want to include it here… (because you have not been exposed to my crazy thinking enough for one day!) Anyway… some people, via the blog, have made me feel that they perceive me as some kind of champion for all I have been through…and for how I have handled it… I talked to a friend about this recently… I told her how uncomfortable that made me… because I don’t think that I have been a champion… I see that I have handled what has been thrown at me, sometimes I suppose I have handled things well, but not always. I told her that I think that hearing that, or feeling that term… champion… is uncomfortable for me…. Because I think that with that comes some kind of responsibility. She listened… and understood… but then told me that it’s ok for me to not see myself like that… and knowing me, she thinks part of that is that I see my own flaws more than other people do, and that because I am the person I am… I would prefer that title go to someone I would see as more deserving… that made sense to me… and she also told me that she and her sister, also a good friend of mine, have talked a lot about what I have gone through and do see me as inspiring… it’s even hard for me to type that word, because it seems like a word with so much power. Maybe my experiences could encourage other people.. but inspiring… that is just a huge word. She told me to look at what has happened… just physically… to my body … and to think about how I made the choice to do something about the pain and decided to have surgery and decided to do the PT … etc… I see that perspective, but I also see it as… I did what I had to do. I don’t think the surgery was an option. Without it, I can’t imagine what state of mind I would be in and how much pain medication I would be on… So I don’t see that I made any inspiring choice.. if anything, it was a selfish choice because it would potentially stop the pain…

Anyway… the what I wanted to say about it is this… I am going to not be as analytical about it all…(After this post!) My blog is what it is… created with integrity and mindfulness… not something that requires justification. (Not that any of you have asked me to justify it, but because at times I expect myself to do so.) In some ways I did want to have a blog to help people in similar situations… Wherever this blog goes, whoever it reaches, in whatever way it reaches them, is all good… and I will accept people’s compliments gracefully and feel honored that people have taken the time to read about my experiences… Thank you.

I would enjoy hearing from more people who have followed the blog regularly… drop me a line to say hi… at ihavepvns@aol.com