ANA Discussion Forum
AN Community => AN Community => Topic started by: Debbi on May 12, 2010, 09:04:12 am
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As some of you know, I started writing a book earlier this year. The book is about life changing medical “events†and how we deal with them. I am using my own acoustic neuroma experience as part of the story, but want to make the topic broader and encompass other life changing medical diagnosis (diabetes, celiac, fibromyalgia, chronic pain, cancer, etc). I don’t have to look very far to find many people who’s lives have suddenly changed when the doctor said, “you’ve got (fill in the blank.â€
So, I am looking for stories and quotes from you. I am specifically interested in learning how you coped with the initial diagnosis (and it doesn’t have to be an acoustic neuroma, it may be something entirely different) and how you have coped with living your life differently as a result of the diagnosis. I won’t use anyone’s actual names and will endeavor to keep all stories completely anonymous.
If you have some experiences you’d like to share, please either add them to this string or send me a PM (or a direct email – see my profile for email address.)
Thank you so much!
Debbi
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Hi Debbi .... let me be the first (by the looks of things herein) to wish you well with your book! Should be a very interesting project. I'll consider responding with some info.
Greg
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Hi Debbi .....
What an ambitious undertaking to write a book! Best wishes as you work on this interesting project.
I would be glad to participate, but I am not quite sure whether you are looking for unusual/unique aspects or just notes from each one's personal journey. I feel like my experience with the AN was rather ordinary ..... from the normal terrified reaction upon diagnosis through to an uneventful recovery. The only thing unique about my situation might be the fact that this was my second skull-based surgery, leaving me with no functioning vestibular nerves.
Just PM me with the kind of response you might like and I will be glad to send it.
Clarice
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Thanks Clarice and Greg-
To give this a little more context ... I think that for many people who are diagnosed with any sort of medical condition, there are two really difficult periods:
1) coping with and understanding the initial diagnosis - this is when many of us go through fear, denial, bargaining and even depression
2) what happens "afterwards" - For those with lifetime conditions such as firbromyalgia or diabetes there is the process of coming to grips with the fact that life has changed and it's not going to be what it was before. For those of us navigating through the post treatment phase, there is still fear and depression to deal with. Some get through it quickly, others have a much harder time.
My intention for the book (the working title is "When Life Gives You Lemons...a Survival Guide When the Doctor Says...", but that may change) is to give the reader some examples of how others have dealt with life-changing medical conditions or events. I know what it was/is like for me to adjust to being deaf on one side and I know what I do to get through the hard days, but what do others do? What gets you through the tough days?
I hope this helps!
Debbi (budding author) ;D
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Thank you Clarice for sending me so much wonderful information. :)
Debbi
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You pretty much know my story so if you want anything from me, just ask!! ;)
K ;D
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Thanks to all who have PM'd or emailed me! If you're on the fence, here are some specific questions ...
1) What led you to the testing/diagnosis - what symptoms did you have?
2) how did you feel in that first 2 or 3 minutes after hearing "you've got a ..."?
3) if you had multiple treatment options, how did you make a decision?
4) Was there anything special that you did to prepare for treatment/surgery? (spiritual, physical, other)
5) Any surprises immediately following treatment?
6) What was the first month post treatment like?
7) How do you feel a year later (physical and emotional).
I am going to sprinkle short quotes throughout the book, so feel free to answer some, all (or none). And, remember, this doesn't necessarily have to be acoustic neuroma related - just something that you feel has been life-changing.
Many thanks!
Debbi (still budding... :D)
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What gets you through the tough days?
Drugs, man. And sleep. Pretty boring life.
Wow you are ambitious! I'll send some info your way, probably stuff you've already read. Maybe an introspective view as a nurse being the patient. I've always wanted to write about that, but I'm too preoccupied with all my nuances and life activites to sit and do it. You just may be my incentive! ;D
Good luck :)
Maureen
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Haha - drugs - very funny Maureen!
But seriously, I'd love some perspective from you as a nurse AND as a patient. In some ways, having an inside view of the medical world is probably a double edged sword when you suddenly find yourself being the patient. So send me anything/everything. And, hey, maybe it will be the start of YOUR book... :)
Debbi (fingers poised on keyboard...)
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In some ways, having an inside view of the medical world is probably a double edged sword when you suddenly find yourself being the patient.
Yep you bet.
It's hard work being a patient. I wanted to know what was going into my body, when I was coherent enough. I wanted to know my hemoglobin, hematocrit levels.
I said NO WAY when they were going to "top me off" with some blood after the bloody thing was removed and my levels had dropped drastically. Fried chicken livers & onions were the cure!
I knew I didn't need that IV put back in when there was maybe just one more dose of antibiotic. I asked her to call the doctor, but she didn't!
She put the iv back in anyway, in the middle of the night of course, only to have it taken out in the morning.
People knew I was a nurse (and my hubby is a navy doc), so that affects some things. Like, "do you want some pain med?" uhh yea.
I was throwing up in the ICU after brain surgery. Repeatedly. They should have been pushing something in that IV at rapid succession to get it under control, but all I remember is the heaves, the head exploding, and some well intentioned nurse dabbing my mouth with a cloth. Give me a dang cold washcloth will ya?!
With my most recent face surgery, I had this fear of throwing up. Did well the first night. Kept asking for nausea medicine, just in case. I then knew it was either zophran or reglan or phenergan. They rotated them.
I had one throw up the morning after the face surgery. I was doing soooo well.
The doc had ordered 2 potassium pills, on an empty stomach, which came up. Bad doctor! Bad nurse for not asking the doc to make it IV form. I was an easy patient. I'm in the ICU!
The next day, I DID get IV potassium like I should have the previous day, and was fine. Then I was paranoid until I left the hospital that I would throw up.
And as a nurse, I know when I want my pain med and nausea med, and you better bring it to me! And bring me the nausea medicine before the narcotic, not with it!
So that's all for now. ;)
Maureen
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Moe, Sounds like my surgeries! Like my questioning why my jugular (which was done for my CSF leak surgery since no veins around from the previous trans lab) had an x ray taken for it on Sun when it was put in Fri night in surgery and the x ray should been done right then. Was already locked by Sun. Plus I have stories too.
Cheryl R
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I just want to thank everyone who has taken time to share their stories with me. Not surprisingly, I am awed and touched and humbled. And, I am reminded yet again of how similar and yet unique our experiences before/during/after are. Thank you to those who have PMd me, and those who've responded here - and please don't stop! I am already thinking about the next book! ;D
Debbi
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Like I told you before Debbi, I'll be happy to help with anything you need! :)
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Hey Scott!
Haven't seen you around these parts for awhile. And, thanks for the offer. There are actually quotes and observations from your story on the Brain Gang Blog that I would love to use. I will be putting all quotes in as "J, an acoustic neuroma patient" or "C a diabetes patient" - keeping all contributors completely anonymous. Your story is a powerful one and you have managed to articulate some of the emotions that we all experience during this journey - so thank you!
Meanwhile, for anyone reading this thread, if you haven't checked out Scott's blogsite, please take a few minutes to do so. It's loaded with all kinds of information and patient stories - great reading. http://thebraingang.wordpress.com/ (http://thebraingang.wordpress.com/)
Cheers!
Debbi
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:)
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Hi Debbi,
How is the book coming along? I'm glad you've gotten some good material from the forum. I look forward to reading it. Like Clarice, I feel like my AN experience, while challenging, is not terribly eventful. Leading up to my surgery, I was informed but uninformed enough not to be terrified of the actual surgery! My husband kept saying, "don't you realize how serious this is?" I guess I was blissfully unaware. If I had to go back in for major surgery again, I'd be a bit more scared!
I can send you something if you still need material, but I feel like my adjustment / life changing moments of dealing with 'something big' have come in dealing with my first daughter's autism (a life long process) and my youngest daughter's battle with depression (one of the most life changing, traumatic, shocking things I've ever dealt with - but it has gotten much better). If you're getting into more of the mental realm (maybe for your sequel!) let me know, and I could share boatloads.
Keri
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Hi Debbi
I thought I'll give you my experience of when I was first told I had an AN. I'm sure my feeling's were wrong in some way, but its how I reacted.
Over the years I had gone back and forth to my GP about hearing issues and ear infections, but he never referred me as he said it wasn't an ENT issue. After I'd moved and changed GP my new GP referred me to an ENT doctor who in return arranged for an MRI.
I knew they had found something because they asked me back the next day for a further scan and the day after that I received a letter from the ENT doctor saying that he needed to see my as I had a swelling on the hearing nerve. I then search the internet for swelling on the hearing nerve, which come up with loads of possabilities. Cancer being one of them. So I thought the worse.
My partner and dad came with me to the hospital. After the ENT doctor had told me I had an AN and I had confirmed with him that is wasn't cancer I was so happy, which both my partner and Dad couldn't understand. I was told that I would have to have the op due to the size and I would most likely loss the hearing in my ear and I may experience a couple of weeks of facial problems, but my face should return to normal. It was only the next day when I went on the internet did it actual hit me what I was facing so to speak.
Anyway I have had the op. Now deaf in my right ear with an intact facial nerve, but a very upset facial nerve with very little movement 7 months on. Having GK in 6 months time for the remaining part.
I cant lie when I say this experience has changed me as a person. My out look on life has changed and I would like to think that even though the worse happened to me I am a more positive person for it.
I wish you luck in writting you book. And wish you well
Steph
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Thank you both, Steph and Keri. Every story is welcome at this stage. I am up to about 75 pages of what I plan on being about 100 pages total. Then comes the job of getting it published! :) :)
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My thought is this....Did anyone get the licence plate of that truck that hit me? Did you get it when it backed up and hit me again??
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Hey Opp -
Well, I didn't get the license number, but if you get it would you let me know? I think the same truck hit me! ;D
Debbi