A wish by the spirit Joan Young

A Wish by the Spirit, has encouraged me to write my own ITP journey. Different in that I haven't had cheamotherapy. Different that I have had 17 years of diagnoses but only periodic drops. Different in that it is my own experience and English.

I am not sure how it will happen because I don't naturally stick at a longer project. But am sure - as we all do, have our own story to tell. Some of the posts on here by other posters will help me to analyse my own experiences. What made it more viable a project is the most recent post, who asked what does IVIG feel like etc? I could answer that have had my fair share of it.

The ITP info will be correct, of my experience of it. I want to aim it to be sort of a novel. I can build my life into the story I guess, somehow. That is what I was battling with. Then we went to Blackpool yesterday for the Illuminations. Through some silence time helped me to reflect a bit more how to make it possible. The first time my ITP reoocurred the 'rambling group' would have been returning from Blackpool only we hadn't gone that time. They were coming back on the bus as I was in the local A&E. A wedding party was in there too and a stressed out doc I think. He just 'stabbed' me with the needle and I suppose ordinarily it would have just been a deep colour bruise but because of my low platelets a bigish swelling come up. Everyone commented on it - and made sure theirs' was much better..... That will help form my story and will flow as such.

Just a matter of saving my pennies too because I think a regular publisher may not want it because it too narrow a subject. I heard something about Book Month I think you guys have next month. About writing so many words by the end of November. Well am going to use that to focus I hope. I have registered my name on the website. At least it a specialist area and no one can pinch my story because all about my experience.... Though I guess some one might pinch it and write it better. But yes, the trip to Blackpool Illuminations yesterday helped though I have that rollercoaster ride and I not even started the plan yet.

I will make sure PDSA is thanked in the cover somewhere because without you guys I wouldn't have known so much. Our own English version is there but very few use it and this is more widely used.

I want people to seriously asked me how is it going - mainly to keep my spirits up in writing it. That is what the website advises. For it says the more people we tell, the harder it will be to stop because they will all be asking 'us' how it is going and it be so much harder to tell the that one has stopped.

So please too, if any of you pray or whatever it is you do actually do, keep this project in your prayers and hoping that by this time next year the PDSA bookstore will have another book on the bookstore site thats if they are willing to sell books from across the pond:P

You could self publish electronically for nothing. I read on a Kindle and lots of people self publish their writings for it. You can charge the reader what you like. Have a look on Amazon to see how it's done.

Hey Rhiannon, Just wanted to say good for you, putting your journey into words can sometimes be part of heeling and make you feel good, don't forget to share the good times as well. I believe having ITP has made my life different and I have come to appreciate a lot of things that at one time I took for granted.
I will look forward to hearing about how your book is going. Ann has already suggested Amazon, there is also a web site called Smashwords.com that publishes books. There is a book called Heartaches ans Miracles by Greta Burroughs that is her ITP journey and it is an excellent read as well.
Milly

I just downloaded the sample of that one Milly and am off to bed now to read it.

www.amazon.co.uk/Heartaches-and-Miracles-ebook/dp/B005FYG7E4/ref=sr_1_1?ie=UTF8&qid=1318198128&sr=8-1

thanks both of you. I am vagually aware of ebooks as a way forward and may use that as well as publishing. Some publisher may be interested

Good point Milly about sharing the good times too though I haven't ever really viewed ITP as negative in that sense. I have a most unusual way of coping with health by the sounds of things. But I do plan to share the good stuff and am hoping that the heamatology department where I go be able to help too and as I do have a reasonable relationship with them I will ask various things like my early treatment and what I had before the splenectomy for I haven't a clue what they tried then. I was told and saw all the stuff but the names meant nothing then.

But will definately make sure this website receives a hugh mention because I have learned so much more through being here

Thanks for believing in it

I want to thank you for mentioning my book, Heartaches and Miracles by Greta Burroughs. I wrote it as a way to encourage others who are fighting ITP to never give up hope. Several other ITPers who are on the PDSA facebook page contributed their stories to H&M. My mission is to inform the whole world of what ITP is and what it can do to a person.

As far as publishing goes, for ebooks go with Smashwords and Amazon. For print go with Createspace. That worked best for me and other authors I know. Traditional publishers are not very receptive and self publshing is the best way to go now a days. I wish you the best of luck in publishing your story. I found it to be a great release of my inner feelings and I hope it does the same for you. The more people who relate his/her story, the more recognition ITP will receive and hopefull bring about more research and more effective treatments

I would love to read that story. Stupid question though, do I need a Kindle?

In an effort to get the word out about ITP I contacted PDSA a few months ago asking permission to use the PDSA logo on my site. I just finally got the logo on my site last week and is linked to PDSA. Very soon I'll be adding a link below it to tell "My Story".

Kelly,
You can get a kindle for pc/mac from Amazon, a free download and read ebooks on your computer. They also have apps for iphone and all those other fancy things. Hope that helps.

I purchased the book and read it on my computer, HTML version. It was an excellent book, I really enjoyed it. Thankyou Greta for trying to raise awareness for this cause. I think that all our stories are interesting, it would be good to put together a collection of short stories and put them into a book.

cirquefan wrote: Kelly,
You can get a kindle for pc/mac from Amazon, a free download and read ebooks on your computer. They also have apps for iphone and all those other fancy things. Hope that helps.

Yes that does help, thank you.

I've not got a kindle and no money for one in the near future other things being more important and on a limited budget. But Milly, thanks for saying you read it on HTML. I am guessing that is just an odinary computer and yes I will read your book too Greta if I can access it that way.

All our experiences are very different but like you say the more we can get out there, then the more people will be aware of ITP and how unique it has been to us all. I do not have a lot of inner feelings about it which may make it harder as a writer. But I have my own story as we all do and I would encourage everyone on here to think about putting their own personal journey into a collective book and 'we' could sell it via ebooks and any money could go back into PDSA or the medical research that is behind it. What do people think.

Milly, that is an excellent idea to have a book of short stories by ITPers. Glad you liked H&M. I just want to spread the word so that everyone knows about this disease. When it strikes, most victims are unaware of what is going on and pre-knowledge would help so much for the newly diagnosed.

Rhiannon,
If you go to Smashwords, you can download any ebook as a PDF to read on your computer or you can get the Kindle app from Amazon to read ebooks on your computer.
There are not many books concerning ITP, and I think the collective book, using the proceeds for ITP research is an excellent idea.
You say you do not have any inner feelings but once you start putting your story on paper (monitor)you will discover that you really do. As you write about your experiences, the emotions you and your family shared will come back to you. I encourage you to just let it flow and you will be surprised with the end result. Good luck.

Thank you for the encouragement it means a lot

I did start last Sunday though typically my pen ran out. I could have done lots on wednesday afternoon and today but got out of it. I don't have to dig deep that is one thing in my favour. The hit a slight snag because I believe I know how I contracted meningitis. Of course the medical world would say I don't have a spleen. I am not ready to share how got into that situation. Meningitis being a doorway for me at the time. I am odd as I don't mind the world knowing per se but too my family - parents, are too close. I think that is why I got stuck so early on because I could just skip out my own personal belief there.... One shall see what happens.

Anyways, thanks for the encouragement and yes I will stick at it and make a proper start etc. As you say, just let it flow and see how it goes.

Rhiannon,

I understand the discomfort of writing about personal things. I grew up in an age when monthly periods and other "female" things were not discussed openly. I was kind of worried about discussing that topic in H&M but my husband encouraged me to go ahead. I have not had any negative feedback about it so I guess it is not taboo anymore.
Your situation is different, I know. You have some experiences that you are not ready to share. Don't rush anything, the right time will come and you will know when that time arrives. Keep the faith and think positive...High platelets for everyone!!!