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Dedicated to bringing comprehensive healthcare information, immune globulin information, community lifestyle and reimbursement news.

Posted on 26. May 2010

Toto, We’re Not In Kansas Anymore!

By Ronale Tucker Rhodes

Since you’re reading this blog, you know the frustrations of living with an immune disease. It can be like waking up in the Land of Oz, wandering down a Yellow Brick Road in search of ways to understand what caused your illness and how to feel better, to explain to others how it feels to be constantly ill, and to find and bond with others who are experiencing the same physical and emotional pain. Wouldn’t it be nice to be in Dorothy’s shoes, and be able to click your heels three times and go back to - no, not Kansas - but to a less-frustrating existence?

As the editor of IG Living magazine, I’m keenly reminded every day about this journey down the Yellow Brick Road for those in the immune-compromised community. And, while we have been planning the launch of this blog for many months, I’m now more excited than ever about what this blog will mean to you after having attended the Clinical Immunology Society’s First Primary Immune Deficiency Conference in Philadelphia. For three days, seasoned and newly trained immunologists discussed and debated emerging research, diagnoses and treatment options - motivated by how what they do affects patients and their families. How wonderful it was to have a forum where physicians could come together to discuss their theories and share their case studies! But, what this conference really got me excited about is that it showed me that, now, you also can have the same type of forum through this blog.

Don’t worry. We don’t expect you to come up with the topics to discuss each week. Like the conference, we’ll do it for you. Each week, we’ll post serious and humorous insights and anecdotal stories about living with an immune disease, spotlights on people who deserve to be admired, strategies for getting the information you need, accounts of current events and breaking news and what they mean to you, and more. Everything posted on this blog site will be about finding solutions, sharing stories and just getting a good laugh.

But, it’s important for you to understand that while this blog is an extension of the content we provide in IG Living magazine, it is very different content. We like to think of it as content with a “point of view” - ours and yours. Meaning, we don’t want to be the lone content contributors. We - and others in the IG Living community - want to hear your thoughts and opinions about what we post weekly.

As Glinda the Good Witch of the North said to Dorothy, “You always have had the power to return home.” We, on the other hand, have the power through this blog to control the direction we stroll on our journey down the Yellow Brick Road. Are you ready to take the first step?

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Categories: Life With IG

Comments (5) -

Nicole Kofoed
10:00 AM on Thursday, June 03, 2010

Thanks so much for all of the resources that you are providing us with! My nine year old son has primary hypogammaglobulinemia, IgG subclass 2 & 4 with neutropenia. Despite the hardships that he faces, we have instilled in him the ability to live life to the fullest! Our skate boarding, rock climbing, BMX riding adventurer never lets his health get him down! We have learned so much by using your resources; how to be cautious with some things and set our minds at ease with others... because of your resources, we are helping Cody live a full, happy life! Thank you!

Jake
9:15 AM on Friday, June 04, 2010

Reading this was very comforting.  I do feel like "waking up in the Land of Oz, wandering down a Yellow Brick Road in search of ways to understand what caused your illness and how to feel better, to explain to others how it feels to be constantly ill, and to find and bond with others who are experiencing the same physical and emotional pain."  I can so relate!!!!

I am 35 and was just diagnosed with CVID 1 year ago.  It's been a rough year dealing with Insurance companies, Doctors and many new diagnoses...

This seems to be never ending, but at least now I know why I've been sick my whole life...

Thanks for developing this Blog, everything helps!

Amy
5:47 PM on Monday, June 07, 2010

Thank you...thank you...thank you...  your efforts are much appreciated! I look forward to getting my new issue every month!  There is so much great information there!

Elaine
3:09 PM on Thursday, June 17, 2010

I am glad to have this format where I can share my frustrations, joys and thoughts. I was diagnosed in 1996 after some very serious illnesses. After about 18 months of treatment I was advised that they had done everything they could and that if I didn't stop working at my job I would die.

I then took a leave of absence and did better but 6 weeks after going back to work, I had pneumonia again. Then I quit and got better. Not yet having learned my lesson, I went back to work and all went well for about a year. Then I began to be sick alot. I was able to work 4 more years and am now retired on disability due to my illness and its complications and some other health issues I have.

I am thankful to be alive but this year I was in the hospital in February with MRSA pneumonia and strp in the bloodstream and I was in the hospital in March with "regular" pneumonia. I am on SqIV but did no better on IVIG. So while I glad I am alive and can be treated, I sure wish I could stay healthy,

I also wish we could have had this 15 years ago.

Carol K Keagle
1:52 AM on Friday, October 08, 2010

Thank you from the bottom of my heart for providing patients with a PIDD a service in which no other exists in a family oriented format. I love the mag. and share with others every chance I get. Once again, thank-you.

Carol Keagle, CVID

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