Posts Tagged ‘Duncan Cross’

Patients for a Moment: The Fifth Edition

August 11, 2009

Welcome to the Fifth Edition of Patients for a Moment, the Blog Carnival for, by, and about the most overlooked participant in medicine – the patient. If you enjoy the Doctor’s blog carnival, Grand Rounds, or Change of Shift (Which highlights the Nursing field) read on and see things from our point of view for just a little while.

Laurie Edwards has taken a day or so away from A Chronic Dose to take a “working vacation” – a phrase that usually means “Same life, different zip code” – but now she’s back and has been contemplating Illness vs Disability. What defines these two states? Can you be one, but not the other?

Liz Schau of Dear Thyroid is less-than-impressed with her “roommate”, the unwelcome guest in her life in her essay Oh, dear thyroid, can’t we please gland along? Like the unwanted house guest, it just won’t go away… and like fish and relatives, it begins to stink after three days!

Rachel B. of Rachel’s Diabetes Tales has recently come to understand that Owning My Expertise also means using it – for the good of others. Chronic Illness bloggers are strong advocates for living our lives with (or in spite of) our individual circumstances. If we can help someone else understand our lives, the road gets a little easier for those who come after us.

Someone asked Kairol Rosenthal of Everything Changes What’s so funny about Cancer? Ummm… Kairol, I’m glad this is your question! Suddenly I’m out of my depth. Somehow, I just don’t think this subject is a laugh a minute…

In the midst of her battle with chronic pain, Barbara Kivowitz of In Sickness and In Health finds solace in a familiar Anthem. Music can instantly transport you to another time and place: Whenever I hear a certain 1980’s tune I am back in college; a few years before the heart operation that almost killed me. No pacemaker, no stroke, no chest infection, one pill a day. I want to tell my younger self, Slow down, man; enjoy it. These are the days that dreams are made of.

Duncan Cross asks “How’d she die?” in reaction to some of the “misinformation” *cough*bullcrap*cough* being spread about the Federal Health Care Proposal. Instead of avoiding the subject of death – or lying about it – we need to talk it out and make some important decisions. This ain’t no dress rehearsal, friends.

Leslie Rott of Getting Closer to Myself has been pegged with the 710 tag and it won’t go away. Everyone Wants To Be A 10, But No One Wants To Be A 710 is the story of how she is slowing turning herself back into a 10. Go forth and read; she’ll be happy to explain.

A reader thinks that Aviva of Sick Momma doth complaineth too much, so she asks To Whine Or Not to Whine? That Is The Question. It’s my experience that the big things never bother you – the little, everyday crap that you have to do over and over and over again is what drives you nuts!

Selena Kerrbs Inouye of  Oh My Aches And Pains! sends her account of delayed-reaction Survivor’s Guilt in My Routine: Working on Letting Go of Some Old Routines. Beating Survivor’s Guilt is a hard road, but Selena is taking it one step at a time.

Lisa, author of All That and a Box of Rocks, sends us Back to School (with Patients). Like moms everywhere, Lisa is beginning to think about sending her young son to school this fall. But this isn’t your ordinary school age child… and Lisa isn’t an ordinary mother.

Evan Falchuk of the See First Blog offers his take on denial (not the one near the Sphinx and the pyramids) in Denying Illness. Have a problem, fix the problem… seems logical enough, but fear can make you avoid the issue.

Barbara Olson of Florence dot com has already read Leslie Rott’s Patients for a Moment submission and comments on her own frustrating encounter with the health care system in It’s all in the Numbers. Barbara never sat on the examining table and never disrobed, yet was diagnosed with TWO medical conditions. Once again, we’re reduced to a series of billing numbers. My name is Steve, remember that. I am not 746.1 (Tricuspid Atresia, Congenital)

Your humble host, Steve of Adventures of a Funky Heart!, reaches back in time to highlight an unsung hero in Thirteen lights. He was just an ordinary man in an ordinary job; he probably had no idea how many lives he changed.

And with that, Patients for a Moment: The Fifth Edition comes to a close. Thank you so much for dropping by! Kim, the Head Nurse of Emergiblog will be your host next time; the deadline for submissions to her blog is August 23rd!

Check it out!

July 15, 2009

Although I’m out being defanged and declawed, I’m not going to leave you hanging. Head over to read Duncan Cross’ blog! The third edition of Patients for a Moment is up, with some great writing from the patients point of view. Duncan  drops by Funky Heart to read our post, “In the Middle of the Night…” Return the favor and check out some of the great writers who are included in Patients for a Moment!

A New Audience!

July 1, 2009

Duncan Cross’ new patient blog carnival, “Patients for a Moment #2” stops by Adventures of a Funky Heart! to read Heart of a Warrior. Duncan just got Patients for a Moment up and running a few weeks ago, and he’s hopeful it can become just as important and influential as Grand Rounds or Change of Shift. Swing by his blog and read some great blogging from the patient point of view.

I have to apologize to Duncan and all his readers, Funky Heart was included in Moment #1 but I didn’t even acknowledge it. It’s pretty easy to get distracted when your tooth is giving you fits! Sorry, Duncan!

What’s the goal?

June 29, 2009

Duncan Cross is at it again; this time he’s got a huge bone to pick with the Crohn’s and Colitis Foundation of America (CCFA).  The nation’s health care system is being renovated, everything is on the table, and practically everyone in Washington DC is putting their two cents in. The only group not fighting to get into the debate is the International Association of Airship Navigators.

So what’s Duncan upset about? The CCFA wants their members to support a Senate bill that will promote research and establish awareness programs.  So while everyone else is redefining health care as we know it, the CCFA apparently wants taxpayers to pay for those little  purple rubber “awareness bracelets”!

No wonder Duncan is upset. He’s got another post worth mentioning about advocacy organizations that funnel all their time and effort (and fund raising) into finding a cure.

For a lot of Chronic Illnesses, a cure may be a long time off. I don’t think there will ever be a “cure” for Congenital Heart Defects (CHD’s); Wikipedia lists 23 separate defects and also states that the list is incomplete. (When I count them up I usually get 35 CHDs, not counting any “blends” – one defect superimposed on top of another.)

So while all these advocacy groups are running around shouting “Donate to us! Help us find a cure! We need your help to find a cure!” at the top of their lungs, a lot of them are forgetting one of the most important things they could do:

Helping those who suffer from that illness to live their lives to the fullest.

That’s one thing I like so much about my group, the Adult Congenital heart Association (ACHA). Yes, we’re all about the technology and the research, but our mission statement makes it clear that one of our goals is “to improve the quality of life and extend the lives of congenital heart defect survivors.” And that’s right there on our website’s front page for everyone to see. Eliza’s doing her part to keep us all going by organizing the ACHA Bolder Boulder team. The national office is promoting our “Don’t Get Lost” program to return CHDers to care who were told that they were “fixed” (a common occurrence). They have also recently developed Vision 2020, our initiative to make sure that everyone with a CHD has good health care – from their Pediatric Cardiologists through the transition to an Adult CHD doctor. We’re not just looking for a cure – we recognize that part of the “cure” is 1) better medical care and 2) doing your part to take care of yourself.

So take a good close look at your support group. What are their goals? What are they doing? Trying to find a cure is great, and hopefully one day someone will figure it out. But until then, is your group trying to help you make it day to day?

If not… it might be time to look somewhere else.

Don’t Hide

June 11, 2009

Duncan Cross has a great post about chronic illness that he’s titled The stupid truth about nearly every disease that young people get. Duncan lists a laundry list of side effects and personal crises that sufferers of that illness could experience. And then he asks the Big Question: which Chronic Illness is this?

There is a correct answer, but that’s not the point. The list can easily apply to nearly every Chronic Illness out there – Heart Defects, Cancer, HIV, and so on. The point, as Duncan says, is “it sucks, but no illness has a monopoly on suck.”

Our worst trait – Duncan has picked up on this also – is our tendency to let our our illness define us. It doesn’t. Granted, we are shaped by our experiences, but in the end many of our experiences are common to just being human. And if we learn to deal with that, we’ll see that we are pretty much like everyone else.

I have a heart defect, and because of it I have a variety of unusual life experiences. But if you strip out everything in my life that is affected by my heart, there is still more than 90% of me left… and that part is boringly normal.  I eat, I sleep, I chase the ladies – occasionally they chase me, but not as often as they should –  and I even get frustrated and yell at the TV when the Atlanta Braves aren’t doing well. (I’ve been yelling a lot lately!) Oh, you do things like that too? It must not be that big of a deal, then.

I had some good luck while I was traveling to Philadelphia for the Adult Congenital Heart Association (ACHA) convention – I had to change planes in Memphis, but my flight was delayed and that would leave me with only ten minutes to change planes. When I pointed that out to the ticket agent, they shifted me to another flight – direct to Philadelphia!  But I arrived ninety minutes early and couldn’t check into the hotel, so I sat down and did a little people watching. I tried to guess who among those who passed by might also be an ACHA member. All my guesses were wrong – we don’t wear signs.

So even though some of us have to live with a different form of normal, we’re more alike than we are different. The goal of living with a heart defect is not to withdraw into our own world, but to live. And that is probably the most important piece of wisdom that I can pass on.