The man who could.

Just wanted to pay a small tribute to my grandfather—Paul R. Wharton—who passed away this morning. At nearly 95, the man could not have been sharper. When he recently asked me what I needed from him (shortly after my lung surgery) I replied, “A new set of lungs!” He laughed aloud and told me he’d happily give me his whole body.

Cheers to GrandPaul. Much love and a well deserved rest to you after an incredible life.

The multi-illness problem.

Just over a week ago I tested “normal” for a blood antibody that would have explained the massive hives that have been taking over my body as of late. “Well, at least you don’t have one more thing to add to your list of issues,” said one of my doctors. (Out of context, it sounds mean, but it was actually kind of funny at the time.)

As a patient with multiple illnesses—regardless of their relation to each other—there is an odd stigma that comes with being “multi-faceted.” Add an elderly body to the mix and Siri Carpenter’s piece in The New York Times will ring loud and clear: “Treating an Illness Is One Thing. What About a Patient With Many?”

“Because so little research includes complicated patients, physicians have little scientific evidence on which to base their care.” More here: nytimes.com

Funny, you don’t look sick.

[This post was contributed by Holly McCarthy who writes about the certified nursing assistant programs. She welcomes your feedback at HollyMcCarthy12 at gmail.com]

For those of us with chronic health conditions, the assumptions from those who look at us and see us as healthy can be very frustrating. It is difficult to make people understand something they cannot. You can’t explain what chronic illness is like anymore than you can explain colors to someone who is blind or music to someone who is deaf.

If you are reading this and you do not suffer from chronic illness, you may find these analogies a bit melodramatic. They’re not. When you have a chronic illness you must adjust the way you live and how you approach life. It makes you stronger than you ever imagined possible but it can be very isolating as well.

So, how do you deal with those people who don’t believe you're “sick?”

1. Explain to them what is wrong with you and how it affects your life.
2. Answer their questions without being defensive or sharp.
3. Ask them for help if you need it.
4. Do not mask your pain all the time. If you say you are okay, people will assume this is always the case. Don't whine but be honest.
5. Try to be patient. Most people have no idea what you are going through and never will.

I have often wondered if it might be easier to actually look like someone with a disability. Would people be more considerate and compassionate? There is no way to tell but I have often assumed as much. The overly solicitous responses people get when they are in a wheelchair or use a walker are very different from the incredulous looks I get when I need to stop and rest or can't stay somewhere that makes me physically uncomfortable.

It’s fascinating to me that I often feel like the same self-conscious teenage girl who used to hide her condition from everyone and never let anyone in on my “secret.” We learn early to mask our true feelings and sadness about the things we can not control. But as I mentioned before, our experiences make us stronger than we ever imagined. We know how to get things done regardless of the boundaries before us and that is not a bad quality to possess.

You know you've been in the ER too many times when...

...you find this in your notes and work files (it’s the log-in for the emergency room wi-fi network). Sigh.

In completely unrelated news, happy “Second Guess Thursday” everyone!

Pssst: stay tuned for a very special treat tomorrow—a guest blogger/RN

Great site. Great podcast. Great world.

Not sure if you’ve heard about these guys, but WeAreCrohns.org is a super cool social networking site for people living with Crohn’s disease & ulcerative colitis. (And by “living with” they truly mean everyone: patients, friends, family members, doctors, researchers, etc.)

This past week, WeAreCrohns.org posted their first podcast—an interview with some of the boys from Rubber Side Down (Andy, John, and Greg). It’s informative, entertaining, not too long, and there are some ridiculously great Canadian accents to boot.

They even use the word “crohnstastic.” That one made me laugh out loud. Nice one guys.

The unbearable weight of being sick and well.

“I’m definitely better, but I don’t actually want to say that out loud. I’m worried that is the just the end of a cycle—and not really the end of this bout.” As I relayed the details of my most recent health issues with my mom—and scratched at the remnants of hives left of my neck—I realized that I’ve seen more doctors in the past week than members of my own family.

I scribbled a few notes for the book as I chatted with her that are by no means Orphic, but I’ll share them anyway. Ahemm. In the life-cycle of my own chronic illnesses I’ve definitely learned two things so far:

1. I never want to say I’m feeling better as I am most certainly jinxing myself.
2. I’m probably wrong about this, but I have come to believe that no regular/healthy person will ever fully comprehend the constant fear that I (and all “chronic-illnessers” like me) carry about getting sick at any moment. I am Atlas. It is the weight of the world to me. If you know me at all, you know that I am persistently and deeply worried that I will ruin things for everyone by getting sick yet again.

(See, I told you it was nothing profound.) Happy first full week of spring everyone.

Back in the game.

Wow. Check out this super inspirational story about Jenna Howell—a high-school softball player who is healthy again thanks to Remicade: “Softball player bounces back”

Here’s to hoping all of us can be as brave and strong as this high school teenager.

So it wasn’t the mussels.

Yep, I wanted to blame the cursed bivalve, but it turns out I’m dealing with a lot more than an unfortunate and expensive food allergy (I had my case all made though). I met with an extremely empathic and brilliant immunologist/allergist today who not only made me feel well-cared for, but even told me where to get generic Zyrtec for $15 (Costco, in case you were wondering).

Fingers crossed that this helps—the doctor said she is fairly confident it will, but it will likely be at least a week before I see a major difference. For now, I’ll be trying not to itch so much and listening to this California Report about Allergies and Asthma.

A new approach for allergies: moderation

I’ve been thinking a lot about allergies over the last few days as I down my prednisone and benadryl cocktail* and apparently so has Dr. Wesley Burks.

Burks is chief of the division of pediatric allergy and immunology at Duke University Medical Center and has been conducting a peanut allergy study over the last 2 years. He recently found that “five of nine children with peanut allergies who swallowed small doses of peanut protein under a doctor's supervision daily for over two and one-half years can now eat unlimited amounts of peanuts without any signs of allergic reaction.”

Turns out my mom was right about moderation. More here: webmd.com

*I’m thoroughly convinced that all of my recent hive-bearing problems were caused by some very expensive mussels.

I am a professional patient (part two).

Who needs Botox when you have prednisone and angioedema? Yep, my lovely hives returned the day before yesterday—the kind I have not seen in years—and progressively got worse over a 24-hour period. Not to mention my swollen lips returned in addition to a massively swollen eye and what I like to call “elf ears.” Think of that scene from Hitch with Will Smith post-shellfish (above) and you get the idea.

I awoke yesterday morning very aware of my issues and Geoff + I were like trained athletes. I emailed my 3 main doctors (gastroenterology, pulmonology and rheumatology) to give them the details, packed a bag, canceled my daily work meetings, made sure my phone was charged, and was in the the ER by 8.30am. I even handed the nurses and doctor my iPhone with a message from my doctor. It was awesome—they got the gist immediately and were able to get me all my meds right away. I was out by 1pm.

You have to love (and hate) being a professional patient sometimes. Happy Friday everyone.

Now hear this.

My favorite iPhone app without question was already the Public Radio Tuner (it’s free!), but tonight really sealed the deal. On the train ride home from work last night I listened to Terry Gross’ Fresh Air interview with both Karen Tumulty and Uwe Reinhardt about health care. (How cool is that? While I was on the train. I love the iPhone.)

Both Tumulty and Reinhardt share some incredible perspectives about the problems with and solutions for the American health care system. In particular, Reinhardt—who is a professor of economics and public affairs at Princeton University—lays into the knee-jerk reaction so many people have in the U.S. to medicine that is somewhat “socialized.” Listen when you can, it’s definitely worth the hour.

Using Crohn’s to create opportunity.

Talk about an inspirational appetite, check out this story about Canadian Cathy Richards. Cathy used her experience from living with Crohn’s disease to develop a line of foods that wouldn’t make her sick anymore.

The line is called Wellness Foods and their motto is simply “to provide healthy, easy to digest, glycemic neutral foods. We believe in overall health through diet.” (I absolutely love the simplicity of the packaging too.)

For a list of where to buy Cathy’s products, check here: wellnessfoods.ca/purchase

Bon appetit!

Patient Voices: Kidney Disease

I’ve written about the “Patient Voices” section of The New York Times before, but this week’s topic—kidney disease—rang quite true with me. Listen to these stories, especially the last patient Jim Elliott, who has Wegener’s Granulomatosis.

You can hide, but you can't run.

A funny thing happened on the way to the park today...

I ran a exactly one-quarter of an 8-mile race—yep, a measly 2 miles—and was totally exhausted. It was the first “real” race I’d done since having lung surgery and the first time I could find a palpable difference in my life before and after my vasculitis diagnosis/problems. My old self would have killed it, run 7-minute miles, jogged the 3-miles home, and gone for a surf; whereas my current self ran 8-minute miles and then drove to get coffee.

Trust me, I’m happy to be running at all. But it definitely takes an emotional toll when you move from college athlete to pathetic jogger. I know I’ll get back to my old self eventually/hopefully, it just takes time. I also know I can’t hide from it all—in the meantime, it helps to vent.

Speeding the hunt by reversing restrictions.

By now you’ve surely heard about Obama’s plans for lifting the 8-year-old restriction on U.S. funding for embryonic stem cell research.

“Because embryonic stem cells are capable of developing into any type of cell in the body, ...they may one day be able to provide tissues to replace worn-out organs or nonfunctioning cells and, thus, offer powerful new treatments for diabetes, heart disease, Parkinson’s disease and other ailments. Some researchers say the stem cells may even be used someday to treat catastrophic injuries like damage to the spinal cord.” —David Stout and Gardiner Harris

More on stem cells here: stemcells.nih.gov
And more on President Obama’s plan here: whitehouse.gov
Even more here: usnews.com

No rest for the brilliant.

I noticed when I was in the hospital for a few weeks last summer that it’s just not possible to be well-rested in that type of medical environment. Not for the patients as the “vampires” take your blood almost hourly, nor for the doctors as their shifts last an ungodly amount of hours. All I could think was, “If I had to do my job this way, I would constantly make mistakes.” My sister likens it to the type of interrogation tactic a CIA agent could use on a new mother who hasn’t slept for weeks. You’d do anything to get some rest.

With that in mind I was stoked to hear that the Accreditation Council for Graduate Medical Education just issued an open letter that outlined its plans to alter residency duty hours. “The letter is part of continuing efforts to improve the way that medical residents, the recent medical graduates who care for patients, are trained in this country,” says The New York Times resident M.D. (no pun intended) Pauline Chen.

More here: On Young Doctors and Long Workdays

A Wegener’s cookbook.

Not sure how to help your friends/family like me with Wegener’s Granulomatosis (WG) or a similar vasculitis? I found this today, although it’s been out for quite some time: From Kitchens Around the World

This is super cool. It’s a cookbook to raise money for WG and under each of the recipes is the name and location of the person who contributed it to the cookbook—including Lidia Matticchio Bastianich and Martha Stewart.

It’s only $12 and here’s a great review: sharedreviews.com