Friday 12 November 2010

I wish my doctor had

Our Symbol is Pretty but our disease is Not
given me this book when I was first diagnosed, because then I wouldn't have had to learn some of this stuff the hard way. I would have been prepared and therefore ready to take this damn disease on, but oh no he never told me squat. I found this book recently (and held it for a while from the library sorry) while i worked through it.
The First Year Lupus by Nancy C Hanger.  
this book is amazing, and is very clear about how the disease may progress, symptoms to look for and how to talk to your doctor. She covers everything form sister diseases and other symptoms and manifestations of pain (anger & loss of focus) and how to create your support system. If i had this book five years ago I wouldn't have floundered around so much and flipped out on family and friends as much either.

This book makes it all the much better because you learn you aren't a freak nor are those really phantom stuff and your not going crazy.

I think the only reason my doctor takes me seriously is because I come from a medical family and I myself and in the medical field, he is less likely to write me off since I know what the hell I'm talking about but that sad because it makes you wonder how many people doctors write off because they believe they know best?

Either way this is a book to read if you or someone you know has lupus, now if they just made about book about Keratoconus I would be golden.
Blesses be my loves


  1. I am glad you found this book. I know Lupus is one of those diseases that is not dealt with the best by lots of doctors and not always taken seriously. My mother had lupus so I always perk up my ears when someone talks about having it.

  2. I think you're really brave and intelligent to become your own advocate for your illness. I know that my psychiatrists were only able to give me the basic and technical info. when I first learned about having Bipolar Disorder. It is so important for our physical health and emotional well-being to educate ourselves with any means possible. and I'm really proud of you that you're addressing an issue of yours that many people are either ignorant of, have misconceptions or just want to ignore.

  3. @ Sophiadawn I'm sorry to hear about your Mom, it's a harsh disease to have, but its also harsh to witness the one's we love deal with it. Here's hoping this book will help explain some of what she may not be saying to you about her disease.

  4. @Wendy thank you, I think it's crazy that I have to basically have the education of a Doctor about my disease just so they can listen!!! I'm glad you have been able to find out more and become your own advocate.
    As for the others as I have said before anything that shows the human body's capacity to fail or be frail makes others afraid, because they don't want to know,see, or be around anything that discusses or will lead to death.
    Here's hoping that this will change. I would love to read how your disorder affects you or how you work to accommodate it within your practice or life if you are willing to share

  5. Thanks Aisha, I will blog more and more about my B.P. Disorder and have a few blog posts briefly talking about how it's effected me etc...I'm going to have a different blog where I'll talk about my mood disorders/having anxiety/p.t.s.d etc..Have you thought about a different blog for your health and related issues? And I think it would be really interesting to post about magick and mood disorders or illnesses. I haven't seen any blogs yet that really address this. Sending you many blessings.


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