Arm amputation for LE
Comments
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Kicks:
Have you seen (or heard) one in SD? The range maps seem to show it spreading from the Eastern half of the US (where I am), through Southern Canada, and down the west coast.
BarredOwl
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Colleen, welcome to BCO, and thank you for your book. Here on our boards members are expressive about their fears, and open in a casual way. This is supposed to be a safe place for "getting it all out". The members are sincerely very sensitive people, and nobody would ever have intended on insulting you, or anyone else. We hope that this simply creates a dialogue, and everyone can move forward and learn from your well-portrayed experience. We are sorry for all you have gone through.
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THat sounds a horrific experience Coleen, very brave of you to write the book............ the wider perspective is that if we had ALL our nodes removed we would all get LE but most of us only have some removed.........
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Thank you all for your understanding and kindness. Again, if you have any further questions or concerns Please do not hesitate to skype me @ colleen.mckinstrie..just put in subject what/where you are from. It is alwats my pleasure to help ease any fears or help in anyway. I know I speak for many other amputees when I say that we need to be careful assuming it was a choice to "chop it off". Whether you are an author or athlete one is not deserving of such harsh judgements without the facts. I am sincerely touched by those who said apologies ♡♡♡♡♡♡♡♡
We are in this together!
Love,
Colleen
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That was my phrase, and I have deleted it. I didn't mean to suggest that you had "chosen" to have the amputation. I wasn't even referring directly to your particular case.
I'm aware of the phrase, "when you are in a hole, stop digging!", but I am going to have one more shot anyway ......
My point was that even those who do suffer repeated infections, even requiring hospital admissions as did my friend, rarely suffer that particular fate, and my aim was to allay the original poster's fears that it might happen to her, because, you have to admit, it is unlikely?
Obviously, as I said, the decision to amputate could not have been taken lightly, and I have worked with a lady in her 40's who lost a leg very suddenly to save her life when she developed necrotising fasciitis, as well as traumatic amputations, and planned amputations from vascular issues or even from deformity.
If that phrase upset you, and it obviously still does, then I can only apologize again! but it really was not aimed at you, so it is your decision whether you can get past it.
I really hope you can, and, again, I wish you well in your journey!
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Well done Morwenna! I see no foot in mouth!
And Barred Owl, you always say just the right amount of words.
Colleen, I am being very amazed at beaucoup sextremely similar life experiences we have shared, unknowingly, very glad you wrote your book.
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Yeah, if I open my mouth just a little wider I could probably manage to get my other foot in there too!
*slaps head*
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Nooooooooo!!! You are fine!
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Hey Ladies~
Please know that I am available through skpe at colleen.mckinstrie, if you ever want some 1:1 time to answer some of your questions regarding lymphedema/amputation and my particular situation. Also, my book is available for FREE downloads today through Amazon (which I try to do every three months). Keep in mind I am not a literary expert or anyone seeking fame…I am just like each of you….I am a just a person trying to raise awareness and I have a unique story to tell. My hope is only to help others.
Warmly,
Colleen
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Thank you I really appreciate your words. Obviously, it struck a nerve with me, for other reasons that have nothing to do with you. It has been said before and it pisses me off. I totally get what you are saying. It is a trigger point with me because it is such a devastating loss to lose a limb and it has changed my life in ways that I could not even begin to explain. Please accept my apology for projecting anger on you that was meant for someone else.
Warmly,
Colleen
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ok, up there, I just re-read all the posts, and Idon't know why my keyboard decided to say, "sextremely" I meant 'extremely'!!!
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@Colleen, I just read this thread and maybe I'm taking all of this wrong, but being afraid seems like a normal reaction to reading the above post and I am afraid. I wonder if you had read that post before your infections when you had just learned you had LE, when you were trying cope and trying to gain some control, if you wouldn't have reacted with fear also?
I react with fear to every thread about Cellulitis, infections, flares, poison Ivy, bug bites etc. I've never felt like I couldn't express that fear If I needed to on this forum. The most important thing I found in this place is empathy and I am so very grateful for that.
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Does fear ever really go away for any of us…….. I believe there is a way to react to fear without out right saying things that will have a negative impact on others. Especially those battling the same disease. It is entirely possible to express fear and empathy for others at the same time.
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Just want to chime in and say that I have not read your book yet, but do plan to get a copy and read it. I cannot even begin to comprehend what you have been through Colleen, but I am so glad you have put your experiences into a book so that others can benefit and learn from your experience. Knowledge is power. Though it may be scary reading about what can happen, I know that for me, it will make me much more diligent in working to prevent LE. I also realize that despite doing everything right, it can develop and the consequences can be severe. I do think you have a unique story to tell and am glad you told it.
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Hi Colleen,
if you are in San Diego next weekend 30 August we have a monthly lunch meet up, along Miramar Road at 11.30am. Hope you can join us sometime!
Alison
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SusanSnowflake, thank you for taking the time to clarify the complexity of Morwena's response to the original post (which was not, after all, a response to either Colleen or her book, but to the post as she read it). Colleen, hurt, like fear, is a universal experience, especially among those of us battling this disease--and it too can be expressed with empathy in order to avoid a negative impact on others.
I too am grateful for the caring and empathy I find here!
Binney
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