"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘book’

Need your help again…

You may remember me talking about a project Emily and I are working on – we are writing a book and hoping to get it published. I had sort of intended to have it ready and submitted a year ago but, well, that didn’t quite happen. It has been mostly written for almost a year, but I got sidetracked: the story of my life.

Anyway, we are back to seriously working on finishing… Emily is writing her portion (which may have been a large part of the delay) as I continue to remind her that this is formal writing which needs to be a notch (or two or ten) higher than her blog or other conversations. She is doing a good job, although I am slightly regretting telling her that I expected ‘real’ and ‘honest’ and not the sanitized version from her. I am thinking I should have requested sanitized and worked backwards…

On a serious note, this is a big deal and a fairly emotional undertaking for her so I am pleased that she is giving it a serious go. While she works on her part (basically, a short essay to accompany each chapter) I am working on our book proposal which will be submitted to agents in due time. The book proposal is nearly as complicated as writing the book itself, so it is no small task. I know we are not unique among authors who are convinced their book should be published, but, you and I both know that the EDS/ chronic illness community can always use another book that offers encouragement and hope. So, I am going to naively carry on believing that we will be published and hopefully my positivity will pay off. 🙂

I asked for help from my readers when I first got started writing and I am going to ask again:

rainbow scroll 2First, I would love it if you would comment with the title of any books on the topic of living with chronic illness or suffering or any topic that would be helpful to living  well with chronic illness that have helped you and you can personally recommend. This can be as a parent who has an ill child, a teenager who is ill, or an adult who is ill. I have a pretty substantial list of books, either that I have read or that have been recommended to me but I don’t want to miss any! So, tell me: What books are your go-to selections for encouragement, help, guidance in your life with chronic illness? What book would you give to a friend who was starting a journey with chronic illness?

rainbow scroll 2Second, I am including thoughts, comments, experiences of other teenagers who live with chronic illness. I have several people who have already contributed but have room for a few more. So, if you are, say, are a teenager up to mid-twenties and are interested in answering a few questions so I can include some of your thoughts into my book, let me know. Since the book is applicable for any chronic illness and not just EDS, I especially would like thoughts from other conditions: asthma, depression, anxiety, diabetes, Chiari – any chronic illness, really. I especially need the perspective of young men, as their experience may be a little different than girls. Comment below or contact me via the link in the sidebar.

rainbow scroll 2Third, please take a moment to hop over to this post and answer a couple questions in the poll. Part of the book proposal is research on why my book will sell. So, share your thoughts via the poll so I can have a few statistics on why this book is needed and a head start on future projects. If you have a comment to share about why a book such as this would be helpful, feel free to share it below.

I appreciate your help and am looking forward to hearing from you!


Please Take This Poll

As I mentioned in my previous post, my daughter and I are writing a faith based book that we are hoping to have published. This book focuses on mostly the emotional aspects of living with chronic illness, although some practical advise is shared. It is aimed at chronic illness in general and not only EDS.

We are in the final stages of getting the book ready to submit and I am doing a bit of research that you can help me with. (I have a few future projects in mind as well, including a companion journal that could accompany our current project. This journal would include recommended reading (by me), inspiring/encouraging songs (recommended by Em), and activities/exercises that expand on the topics covered in the book.)

All you need to do is take a moment and answer the questions in this poll if you are affected by chronic illness. The more responses I get, the better!

Thanks in advance!

Check all that apply:


Thoughts on grieving loss in chronic illness

I have been working on my book about living with chronic illness and am back to making progress after taking a bit of a break. I would like some input from you, if you are willing and have it to give.

Today I am thinking about the grieving process that comes along with any traumatic event – like facing a chronic illness. I have previously posted about the grief triggers I have experienced and have been pretty open about the fact that the first couple years into the journey of living with EDS were pretty rough. It is much better now that time has mellowed the grief, but the grief is always hovering just under the surface.

I won’t share my thoughts on grief and grieving here, as I have written ad nauseum about it in the past! If you want my thoughts on the grieving process, just click on the embedded links to go to posts where I have written at length about it.

I would like your thoughts on your chronic illness experiences with:

The 5 Stages of Grief

  • Denial
  • Bargaining
  • Anger
  • Depression
  • Acceptance


  • Fear
  • Guilt
  • Relief


By ‘thoughts’ I mean I would love to have a paragraph or two  from you that I could incorporate into this particular chapter. Anyone with chronic illness is welcome to share, it doesn’t have to be EDS.

 (If you comment, be aware that I possibly may incorporate your comment or a portion of your comment or the general gist of your comment into my book.  Also, if you would prefer to contact me by email instead of leaving a comment on this post, feel free to contact me via the Contact Me form on the side bar; you can also leave a comment on my facebook page. I will try to contact you if I do use your comment, but I cannot promise to be able to do so – consider this your notice. I appreciate your help.) 

Thoughts on Diagnosis and Emotions

As I have mentioned, I am writing a book about living with chronic illness and I would love to get input from you…I apologize in advance for ‘thinking out loud’ in my posts about it.

Today, I am thinking about getting a diagnosis and what feelings that experience brings up. I think there can be any number of emotions that one goes through when being diagnosed (or when a close loved one is): Fear, Anger, Guilt, Grief to name a few.

For me, it was primarily grief. I felt overwhelming sadness about what was lost, about how my daughter’s future was being rewritten from what I thought it should be, for the suffering that she was experiencing. I wrote about my grief and sadness ad nauseam for months, until even I got tired of listening to myself. Sometime after the first anniversary of Em’s diagnosis, my grief  became more manageable. Don’t get me wrong, it is still there, it just rears its ugly head less often. Also, there is truth to the adage that humans can adjust to almost anything and it is harder to grieve when you are accustomed to whatever that challenge is.

I also felt a lot of fear, which is a no-brainer as far as I am concerned – but not much anger, I think because my emotions were channeled into grief instead. I subscribe to the theory that all anger comes from sadness. So, I think I just mostly skipped the anger portion of the program and went straight to sadness. That isn’t to say that I haven’t felt anger at times – it usually is just very targeted anger over a very specific event or towards a specific person. Most often a doctor who has treated my kid poorly.

And I have felt guilty over not getting Em diagnosed sooner, for labeling her a drama queen as a child, for allowing myself to be diverted by doctors poo-pooing my concerns when I knew darn well something was wrong. And, no amount of logic can really alleviate that guilt.

What emotions were stirred up when you (or your loved one) got a diagnosis? Which one was the most difficult to deal with? If you have thoughts that you would like to share on this topic, please feel free to comment here or on my Facebook page.

(If you comment, be aware that I possibly may incorporate your comment or a portion of your comment or the general jist of your comment into my book.  I will try to contact you if I do, but I cannot promise to be able to do so – consider this your notice. I appreciate your help.)


My new project…

I have previously mentioned that I am working on a new project and I think I am finally ready to share it with you…


I am writing a book, with the help of my daughter. The goal is for this book to be a help for families and teens living with chronic illness. I won’t be covering medical advice, but will be addressing the emotional and practical aspects of coping with chronic illness. It will be from a Christian perspective, using scripture as a background for a discussion of various topics that are pertinent to living with a chronic illness. (Honestly, I tried to imagine writing it without scripture and quickly realized it would be a very short book.)

The book is in the early stage of writing, but the general idea is to take the lessons my family has learned and to share them with others who are on similar journeys. It will not be exclusively about EDS (or MCAS or gastroparesis or dysautonomia or chronic fatigue) but because those are the issues we are personally familiar with, that is the perspective that we will be coming from. Our goal is to talk to others (kids, moms, family members) with various chronic illnesses. So, we should be able to add conditions like asthma, diabetes, gluten sensitivity, depression, mitochondrial disease and so on to the list of conditions mentioned. Ideally, there will be quotes and stories from all of these folks.

Em will be contributing by having a section in each chapter where she shares her own perspective. Ultimately, I want it to be a book that the whole family can benefit from – that mom can read it and find hope and help,  that dad or siblings can read it so they understand what their loved one is going through, that it can be handed to extended family members to increase their understanding and compassion. Most importantly, the teen with a medical condition can read it and understand he/she is not alone. It would also be a book that could go into adulthood with the child as he or she transitions to being responsible for their own health care.

It is a lofty goal but I am hoping to actually get this book published and will be working towards that goal. I am definitely stepping out in faith on this one, but I strongly feel that this is what I am supposed to be doing right now.

We will be covering topics like being different, when people say hurtful things, how you are so much more than what the world sees, how your imperfections make you perfect, the grieving process and loss, finding hope in the storms of life and more…

I would love your help with this. Over the next few weeks/months, I will periodically broach these topics and ask for your input. This is the reason I started the facebook page – so we can have these discussions there. Obviously, you are always welcome to post comments here or contact me by email if you prefer.

So, to start the discussion – (comment below on this post or go here if you want to comment on my facebook page.)

What topics would you find helpful if you bought a book like this? What issues do you struggle with in managing chronic illness (especially your children’s)? Do you have any scripture that you particularly cling to and find helpful?

[I have a list of chapters/topics and scriptures prepared but have some wiggle room to expand the list and include topics I haven’t thought of. I am betting the issues I most want to cover will coincide with the issues you share, but am definitely interested to hear what you have to say! Also, many of you are adults managing your own medical conditions – although this book will primarily be for families, I am interested in what you have to say. You were once a teenager and probably vividly remember how difficult it was to live with a chronic illness as a young person. ]

%d bloggers like this: