Laurie Edwards has written Life Disrupted, Getting Real About Chronic Illness in Your Twenties and Thirties. There is really no age limit for people who read this book. If you have any type of chronic illness this book is for you.
As I read Life Disrupted I found myself nodding my head in agreement. Laurie “gets it” and has challenged me to work harder as an advocate for people with chronic illnesses.
Laurie lives with PCD (primary ciliary dyskinesia), a rare illness, which was wrongly diagnosed as a child. She understands many of us living in limbo land with either a wrong diagnosis or no diagnosis.
She writes about life with a chronic illness, from being in the medical forum as a patient, to being a member of society to being a family member. Along the way you’ll learn how to stand up for yourself, how to be seen as person not a sick person, how to make decisions about your medical care and how to live a fulfilling life.
This is a personal and moving book. Laurie shares her life, good and bad. This is an informative book. Read about how to cope in the emergency room and in hospitals, what and who to tell about your health issues and, what you can teach the medical community about people with chronic illnesses. You’ll laugh too, because after all that’s part of life, and Laurie Edwards shows us that you can have a full life even with a difficult diagnosis.
I have added this book to my small list of “must have” books as I have multiple chronic illnesses. I know I’ll be re-reading it and looking over certain items again when I need some reassurance.
Michal Savage has reached an all time low by going on a rant about Autism. I’ve posted about this on my other blog Brain Foggles but I want to reach as large an audience as possible with this information. Please do all you can to share this, to write to the advertisers to tell them to drop their ads for Michael Savage’s radio show, Savage Nation, and to ask your local radio stations to drop his show.
Here’s a bit of what I’m writing about so you can see for yourself:
Hemochromatosis awareness month is July. This rare disorder also known as HCC causes the body to store too much Iron in the blood. If not treated it can be fatal because the Iron cannot be excreted and forms in the organs of the body.
Some symptoms of this disease are the following:
arthritis in the hands, especially the knuckles, ankles and hips
impotence
liver problems
hypothyroidism
cardiac problems including heart attack, irregular heart beat and congestive heart failure
Diagnosis is usually made by specific blood tests. The main treatment for HCC is phlebotomy, which is the removal of blood. The number of treatments depends on the iron levels in the blood. Usually once the levels are normalized treatment is then on a maintenance schedule.
Diet also plays an important role in treating HCC. Avoiding foods high in iron like red meat. Also limiting alcohol and Vitamin C which helps the body to absorb Iron is important.
I plan on running two blog contest in the next few weeks. One will be here. I think the prizes will be books about chronic illness. I think. It’s difficult to come up with ideas for prizes but I’m working on it.
I have been writing more over at one of my other blogs, Mickey Fanatic, the blog that got lost in the shuffle. This blog is about all things Disney especially family travel. The contest there will be soon too. And I’m also trying to figure out what prizes to give out.
I’ve seen many blog contest ask people to sponsor prizes so I’m doing the same on both of my blogs. If you’re interested in doing this, please either leave a comment or use the Advertise Page to contact me. Please refrain from spilling the beans about what prize you’re sponsoring. I really would like to save that information for when I announce the contest. Some suggestions would be Entrecard credits, anything to do with health, like books or advertising on a health blog, blogroll links for high PR blogs, etc. Your ideas are worth it! For all I know I may get some mortgage lenders wanting to help those of us who spend lots of money on medical bills!
I’ll be on vacation for the coming week so I won’t be able to moderate your comments or answer emails but as soon as I return I’ll take care of this, promise.
When someone has difficulty with speech, reading, writing and understanding others they have a communication disorder called Aphasia. All symptoms do not have to be involved but the language disorder does. Most people that have Aphasia get it from a stroke. Some from a head injury or neurological disorder.
People with Aphasia have normal intelligence. There is a disruption with the part of the brain that controls speech not their ability to process information.
From the National Aphasia Association (NAA), here are some tips on how to communicate with a person who has this disorder:
* Make sure you have the person’s attention before communicating.
* During conversation, minimize or eliminate background noise (such as television, radio, other people) as much as possible.
* Keep communication simple but adult. Simplify your own sentence structure and reduce your own rate of speech. You don’t need to speak louder than normal but do emphasize key words. Don’t talk down to the person with aphasia.
* Encourage and use other modes of communication (writing, drawing, yes/no responses, choices, gestures, eye contact, facial expressions) in addition to speech.
* Give them time to talk and let them have a reasonable amount of time to respond. Avoid speaking for the person with aphasia except when necessary and ask permission before doing so.
* Praise all attempts to speak; make speaking a pleasant experience and provide stimulating conversation. Downplay errors and avoid frequent criticisms/corrections. Avoid insisting that each word be produced perfectly.
* Augment speech with gesture and visual aids whenever possible. Repeat a statement when necessary.
* Encourage them to be as independent as possible. Avoid being overprotective.
* Whenever possible continue normal activities (such as dinner with family, company, going out). Do not shield people with aphasia from family or friends or ignore them in a group conversation. Rather, try to involve them in family decision-making as much as possible. Keep them informed of events but avoid burdening them with day to day details.
The NAA is one of a number of non-profit groups that help people with Aphasia. These groups provide information, support, education for patients, family and medical personnel, and raise money for awareness and research. They can always make use of donations. People who feel strongly about these types of medical non-profit groups do many things to raise money. Some make monetary donations, seek donations from family and friends, leave money or stock in their wills to these groups, make donations on behalf of loved ones, etc. I’ve known people who have bequeathed property like Winter Park real estate to organizations that they feel do what is needed to find a cure or treatment.
Scleroderma is a chronic illness which is in the autoimmune category. The word is from the Greek words, “sclero” meaning hard and “derma” meaning skin.
Symptoms of Scleroderma vary greatly. Here are just a few:
Thickening and swelling of the skin at the end of the fingers
Raynaud’s phenomenon
Heartburn and difficulty swallowing
Shortness of breath
Polymyositis
Scleroderma can be limited to the fingers or hands only. It can also cover large areas of skin. It can be systemic and damage organs such as the kidneys, esophagus, intestines and lungs.
Children are also affected by this disease. They have either Localized Scleroderma, which is the most common form or Systemic. There are many treatment approaches for both children and adults. This is often a team approach with various specialties treating a patient.
Please visit the Scleroderma Foundation for more information, to learn about recent research and how to donate your time or money.
