"Suffering the Slings and Arrows of Outrageous Fortune"

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

drumroll

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. ]

Advertisements

Comments on: "My new project…" (9)

  1. Great!! I think the importance of validation from doctors, family, friends, school is essential for our well-being. They don’t need to understand the condition, but they do need to validate the’ invisible suffering’. So glad you are doing this!
    😉 Diana

  2. How wonderful that you are doing this! I was diagnosed with POTS in 2007, but have had symptoms my entire life. I’m currently working on getting a diagnosis for EDS and MCAS. During the bad flares, the only thing that gets me through is prayer and scripture! My favorite is Psalm 73:26 “My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” I think it’s perfect for those of us with chronic illnesses. Our bodies are failing us, but God is with us. There is a special (pain-free) place in heaven waiting for us! 🙂

    • Thanks so much for sharing that scripture. It is a good one! As I am researching this book, I am finding so many comforting verses.

  3. Hey it is so wonderfull to read that there are people in the world that would like to help others by writing and shareing their stories…i am from South- Africa and i am buteling with my ilness i have a rare ilness wich the docters cant diagnose what is wrong with me, the docters though it could be eds tipe 4 but the test came negative but some if my symtoms could be realited with eds tipe 4….with my jounery i learned about eds here in SA the people are not realy in known with eds…I am writing a book to, to help others who is batteling with rae diseases

    • Thanks for commenting! I hope you are able to get the answers about your illness – it is hard and frustrating to not have a name for your symptoms. Good luck on your book and thanks for the encouraging words!

    • Hi everyone

      I’m also from South Africa (Bloemfontein) and would like to know which method did they use to diagnose you? My dr told me that the only way for South Africans to get a proper diagnose is to get their tests send to Belgium.

      It would be nice if we could clone dr. Driscoll in SA hey?… well… without the EDS… lol..

      May God bless you all

      Lorel

      • I am going to jump in and try to answer, although I am not from South Africa!

        I don’t know about testing in South Africa for VEDS or CEDS. The VEDS test is very accurate, the CEDS test is only about 50/50. IF you have reason to suspect that you might have the vascular type, then you definitely want to have testing done to rule it in or out. If you suspect the classic type, I think that most people don’t seek genetic testing because the test is only partially reliable. Most people find a clinical diagnosis by a knowledgeable expert good enough. If you suspect HEDS (hypermobility type) there is no genetic test for it – the only way to diagnosis it is with a clinical exam. So, if you suspect HEDS, the ONLY way to be diagnosed is to have a knowledgeable doc diagnose you by the diagnostic criteria.(I guess what I am trying to say in a long winded way is that if you do not suspect the vascular type, there is really no point of having the genetic testing done.)

        As far as sending away the blood work, I know here in the states there are only a couple labs that do these tests so it is common to have the bloodwork drawn and send it across the country to be tested.

        Hope this helped a little! Are you on the EDNF message boards? I am fairly sure that there are a couple people from South Africa on there, so you might be able to ask this question there and get a better answer! http://www.inspire.com/groups/ehlers-danlos-national-foundation/

        Beth

  4. Kesveri Naidoo said:

    Hi. I’m all the way from South Africa. I have a very good friend that has been recently diagnosed with EDS. However, most of the neurosurgeons, physiotherapists and rheumatologists are unable to really assist her with treatment and management of this disorder. She can’t sit or stand very long, and therefore unable to attend work. Is there anyone in SA that is familiar with this disorder inorder to provide her with the correct treatment inorder for her to manage it properly and to continue living a fairly normal life. From everything I’ve been told, its appears to be type 111: hypermobiity EDS. Any help will be greatly appreciated.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: