Quote of the week:

“They'd have to shoot me to get me back to Illnois."

~Abraham Lincoln upon going to WDC to become president

Monday, May 5, 2008

Inspired

Inspired
My blog is mostly the rants and ramblings of a wannabe writer—snippets of my life for anyone who might stubble over here. Often my writings are of a medical nature, as I work in healthcare, and I’m a major consumer of healthcare services. (I write solely for myself and not for, nor do I represent anyone else in my posts.) Imagine my surprise when I popped over to one of my favorite physician blogs http://mouseasthma.blogspot.com/ to see a posting about CVID, http://mouseasthma.blogspot.com/2008/04/common-variable-immune-deficiency-cvid.html my disease. Imagine an even greater surprise to read that I was in part the inspiration for the posting. I’m not usually (read: never before) referenced by a legitimate professional. I’m used to being referenced in vain or in less flattering modes, by non (or lesser) professionals. {nonsequitur: can someone help this techno-challenged man and tell me how to create those one word links in my blog, instead of having to put in the whole url?}
Reading about CVID from a treating physician was great, as it’s not a well known or well publicized disorder. While called Common Variable Immune Deficiency, there’s really nothing common about it. In fact, we often go undiagnosed or mis-diagnosed for years before we get the correct physician who knows of it. It took over 13 years to finally get mine diagnosed correctly. On two different occasions, two different physicians were convinced that I was testing ‘false negatives’ for HIV. I’m a gay man, getting chronic bronchial and sinus infections—gotta be HIV. Let me state for the record, these grasping at straws diagnoses were really effective mind fucks. The possibilities were remote, but not high on the radar. While I’ve not been a chaste monk, I’m not what one would consider a heavy player of the field. I’ve had two previous BFs who were HIV positive. We were always careful. But the remote chance was there.
Having just come back from Washington, DC as ‘Lobbyist for a Day’, it was cool to discover that my writing about that experience prompted a physician to do a scientific/medical post about CVID. Thanks, Dr. Mark: for diagnosing and treating your patients, and for making your medical reading public a bit more knowledgeable. Perhaps we (meaning You) did some CME vicariously.

4 comments:

GDad said...

Randy,

In the Blogger composition area, where you type your blog entry...
1. Open another browser window or tab.
2. Navigate in the other browser to the page to which you want to link.
3. Select the URL in the navigation bar (http://whatever.net) and press Ctrl-C to copy it to the clipboard.
4. Type some words that you want to turn into a link.
5. Highlight the words like you would if you were going to turn them bold or something in your word processor.
6. Click on the little button that looks like a chain. That will pop up a window with a text entry field.
7. Press Ctrl-V on your keyboard to paste the previously copied URL into this box.
8. Press Enter to close the box.
9. Your highlighted text is now a link.

Wow! All the benefits of a 12-step program in only 9 steps. It's like a sale at Kohl's!

GDad said...

Oh, and coolness about your citation. I know a guy who had a very bizarre tumor that got written up in some journal. He's tickled to death that he's a celebrity in medical circles. It doesn't make up for the fact that he lost an eye, but he sort of rolls with it.

mark's tails said...

yea, the 'Common' part is ironic when you think about it, although it truly is common. Roughly every other year I give a talk on CVID to the Pulmonary fellows and usually get a few new consults for patients they decided to work up after they heard the talk. You can't make the diagnosis if you don't now what the disease is.

DutchMoeder said...

15 years of illness... then the inevitable happened. They discovered my complete lack of IgA. From there it was off to the immunologist who diagnosed me with CVID and selective IgA deficiency.

Now I'm Immune Deficient and stricken with Arthritis, Fibromyalgia, thyroid disease... well I don't have one anymore, stomach paralysis... and the list just goes on and on forever.

You aren't alone out there. Theres a ton of us. Thanks for going to hill on our Behalf!

-Amanda