Crohn's Disease Relief

Book Recommendation - Getting Real About Chronic Illness

I wanted to pass on a book recommendation from a friend of mine from a forum on the knitting and crochet site Ravelry.  The book is called Life Disrupted, by Laurie Edwards, subtitled "Getting Real About Chronic Illness in Your Twenties and Thirties." It's got 16 5 star reviews on Amazon, too.

I got diagnosed in my 30s, but I am into my 40s now.  I think it may be harder to be sick when you're younger because you have a different level of expectations.  Your friends are going out at all hours partying, you are going through the trauma of dating, you don't know how to take care of yourself as much...

 

 At this age (42) and with finally having a good diagnosis of Crohn's and some proper medication, I feel I am a lot more able to cope with having a chronic illness.  It's a bit harder because I have small kids but as they get older and are able to do more things themselves, that's getting easier too.  My boys are 6 and 7 now and they are getting a lot more independed. They can take their own showers, get dressed, get themselves snacks, and operate the TV and game systems.  Woo hoo!

But if you're on the younger side of the scale you might get something out of this book.  If you have read it let me know what you think - use the blog comment feature below.

 

About 150 Medications in Short Supply

Shortages of some 150 crucial medicines have killed at least three hospital patients, according to reports from  a patient safety group.

One of the hospital drugs in shortage is morphine, and two patients died of an overdose when hospitals substituted a more powerful drug instead, according to the Institute for Safe Medication Practices (ISMP).

Another patient died when doctors had to use diluted epinephrine, which is also in short supply.

via pagingdrgupta.blogs.cnn.com

Not a happy holiday story - there are some serious shortages of about 150 different medicines. I took a look at the list of medicines and there are at least a few that could be used for Crohn's patients, including one form of steroid Methylprednisolone Sodium Succinate.

This brings up a larger question for me - how are people with rare diseases protected when drug companies are developing and manufacturing drugs for profit?

TSA embraces new medical notification cards - Travel - News - msnbc.com

Following a highly publicized incident in which an air passenger with a medical condition was put through a humiliating pat-down, the Transportation Security Administration has embraced a new medical notification card that fliers can present to airport security screeners.

via www.msnbc.msn.com

I wanted to share this for those who are traveling and are concerned about the TSA enhanced pat downs. This could be especially relevant if you have any type of ostomy equipment.

Book Received: Protecting Your Health Privacy

AuthorJacqueline Klosek contacted me last week to ask if I would be interested in reviewing her new book, Protecting Your Health Privacy.  She is not only a Pirvacy specialist and attorney, she is also a person with Crohn's Disease.  She has published 5 books in the realm of data privacy, and is working on her next book which will be about Healthcare reform.

I have already started reading the book.  It starts out with parts of the Physician's Oath that relate to patient doctor confidentiality.  Then she goes on to talk about the legal definitions (and sometimes lackthereof) of privacy.  Even though she is a lawyer writing about the legal aspects of the subject, her writing style is clear and understandable. 

As I read more of the book I will keep you updated.  One thing I noticed - the price on Amazon is close to $45.  Wow.  Very cool that she sent me a review copy but that puts it out of range for many patients.  She did tell me that they are working on formatting the book for Ebook readers.