Patients For A Moment: What Advice Would You Give Edition

Welcome to the latest edition of the patient-centered blog carnival, Patients For A Moment. The posts submitted for this edition were based on the following question I posed to readers:

What advice would you give, or what would you want non-chronically ill people to know about your illness and your life?

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These 10 gems of wisdom have taken several different forms, from letter to list, and all provide a great amount of insight into what it means to deal with chronic illness in a world that isn’t always sympathetic or understanding:

Kathy, at Making Noises, provides an honest and heartfelt list about what she would like the people in her life to understand, in the post, Ten Things I Want You To Know.

Selena over at Oh My Aches And Pains! explains the meaning of chronic, suggesting that being chronically ill “is like having a job, except I work 24 hours a day, 7 days a week without pay or benefits,” in the post, Selena Writes: A Letter to the Healthy People In My Life.

Maria from My Life Works Today shares a story outside of illness, in which her ability to understand someone else’s situation is questioned. She connects this story to illness, in the post, So Much to Learn - So Little Time. I can’t do adequate justice to the post here, so just read it! Suffice it to say, she’s got moxy!

In the post, What I'd Say, Brittney from The Road I'm On, shares what she would tell her new classmates about her life with chronic illness, if she could sit them all down at once.

Lisa Emrich of Brass and Ivory “thinks aloud” about what she would like non-chronically ill people to know. While she says she doesn’t think about this group often, she shares what having multiple sclerosis and rheumatoid arthritis mean for her life, in the post, I am still me.

Novel Patient Lauren emphasizes the importance of finding balance and not trying to “one up” each other when it comes to talking about pain and illness, in the post, Complaining About Complaining. 

Rheumatoid Arthritis Warrior Kelly Young shares one man’s experience learning to deal with the impact of his wife’s RA in the post, Living with a Spouse with Chronic Illness, part 2.

From the blog Chronically Young, Britta takes us through many of her symptoms from Lyme Disease, and wishes that others understood how good they actually have it, in the post, What I'd Say.

In the post Awareness...or something like it!, Shweta of it's no more in my head, talks about the importance of being sensitive to the situations of others.

From the blog, Frank Living Fully, Frank Elliot shares a brief story about others being helpful, in the post, Living With Hope In A Community of Hope.

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I am still in need of hosts for the October 27th, November 10th, and November 24th editions – and all 2011 editions (I know, it’s weird to be thinking ahead to 2011 already). My goal for 2011 is to have each edition hosted by a different person. Please contact me at gettingclosertomyself@gmail.com if you are interested!

And I didn’t get a chance to finish the post I was working on for this edition of PFAM, but check back on my blog next week for the post, “I Love You, Don’t Touch Me”, which touches on several of the issues explored here.

The next edition of PFAM will be hosted by Dear Thyroid on September 8, 2010.

Everyone is doing a great job so far!

“Patients For A Moment” Is Here August 25th

I’ll be hosting (again) “Patients For A Moment” on August 25th.

Here is my question for this edition, which your posts should be related to:

What advice would you give, or what would you want non-chronically ill people to know about your illness and your life?

Being chronically ill can be really frustrating because of the lack of understanding from those around us. On the flip side, I think sometimes we forget that not everyone is chronically ill.

In other words:

Those who can’t do, teach. Those who aren’t ill…You fill in the blank.

If you would like to submit a post, e-mail the following to gettingclosertomyself@gmail.com:

Your name (as it should appear)
Your blog’s name
Your post’s title
Your post’s URL

And make sure you put “PFAM” in the subject line.

All submissions wishing to be considered should be received by 11:59 p.m. Sunday, August 22nd.

A Good Nurse Knows A Prick When She Sees One (And Some Nurses Are Just Pricks)

I try not to take myself too seriously. And I try to focus on the funny, silly, ridiculous experiences that come with being chronically ill, rather than the horrible ones, although sometimes they are hard to ignore. Sometimes, however, we just have to laugh at the funny parts, which brings me to this post.

I’d say that one of the most up and down experiences you can have as a chronically ill person is getting blood drawn. I have to get monthly blood draws to make sure that Methotrexate isn’t getting my immune system too down, and also to make sure it’s not negatively impacting my liver. Aside from this, I have to get blood drawn for appointments, tests, and occasionally, research. If the person knows what they’re doing and hit the right spot, no problem. But if they don’t, it can literally and figuratively be a major pain. So this is to say that I have had, and will continue to have, a lot of experience in the blood drawing department.

In my opinion, a really good nurse will be able to tell if you’ve been poked recently, and sometimes they’ll even be able to spot their own work, or definitely know that they didn’t prick you like that or leave a bruise. So imagine that in a one-week period, I was stuck seven different times. I guess I’m no one poke wonder…

I know that I’m not an “easy stick”. This is something I’ve come to accept. When I go for blood draws and they ask which arm they should use, I hold both arms out and say, “Pick your poison”. Most of my veins are superficial and blow easily. And I’m a small person, so naturally, I have small veins. I’m lucky if they get two tubes out of one stick. I’m a veritable pin cushion.

It’s also weird when nurses and techs say things that are on the list of things you don’t say to a patient. For instance, one nurse, after administering my EKG, asked when I would be seeing my doctor again. Like when are you seeing your doctor, because you need to.

Then another asked what I do for work. But she didn’t phrase it that way. She asked if I’m capable of working. Why, because I told you I have lupus? Or because you see something going on with my heart, on my ECHO, and you can’t imagine how I walked myself in here, let alone get out of bed every day in an attempt to be a productive member of society?

Finally, another nurse says to me, “You look so familiar”. And in my head, I’m thinking, I’m laying here with my boobs hanging out of this gown, with ultrasound goop all over me, and an arm which is about to be shot up with agitated saline. But hey, I get that ALL the time.

And let’s talk about the “agitated saline” for a second. Basically, they inject microscopic air bubbles into your arm, and then they inject saline. This provides contrast and identifies any holes that may be in your heart. It’s not as bad as it sounds, except when the nurse misses the vein and has to stick twice. All the while, I’m thinking that I’m agitated enough as it is, I don’t need agitation flowing freely through my veins.

It’s not just what they say, but how they say it. And one of the reasons I’ve stuck with the doctors that are currently on my medical team is because none of them are alarmists. And that’s what I need. I don’t need someone who is going to make me nervous by saying or doing stupid things.

So why is it, that as patients, we feel compelled to apologize for being hard sticks or for asking too many questions? Why don’t nurses ever feel compelled to apologize for their tactless behavior?

Today, I went for my monthly blood draw. The phlebotomist asked me my birthday and I said, “8-11-85”. She said, “Happy birthday”. I said, “Thanks, it’s tomorrow”. She proceeded to argue with me, “It’s today”, and I said, “No, it’s tomorrow”. The tech next to her said, “How much longer are you going to argue with her? Today’s the 10th”. And then the other tech said to me, “Are you really sure you want her to draw your blood?”

That’s exactly my question…

When you’re chronically ill, blood draws become routine very quickly. But, seriously. As patients, we allow these people to have way more power in our lives than they deserve. And lab techs simply see us as things to prick. Because we see them for such a short time. They don’t see the person behind the needle, the human instead of the disease.

These experiences are frustrating, although it is pretty humorous that someone argued with me about when my birthday is. After all, I should know, right?

So I have to wonder: when we stick out our arms, are we sticking out a whole lot more than that?

Give And Let Give

“You can’t know how you would behave in a crisis until it drops out of the sky and knocks you down like a bandit: stealing your future, robbing you of your dreams, and mocking anything that resembles certainty. Sudden tragic events and even slow-burning disasters teach us more about ourselves than most of us care to know” (7).

- Lee Woodruff, “In An Instant”

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As I mentioned at the start of the summer, I have been doing some volunteer work at a local hospital. I really want to talk about the experience, but I am going to keep this sort of general and vague, in order not to violate the privacy of anyone involved.

That said, I have been truly amazed by this experience so far. For me, I wanted to do something fulfilling (and outside of academia), and I also wanted to try and make the hospital a less imposing place for me to be. I didn’t want all of my hospital experiences to be as a patient, to be only on the side of the vulnerable and helpless.

And I’ve seen it now, from the other side. Patients’ families have their own private clubs. It’s like the way it used to be at the airport. They step off of the elevator and run into each others arms. They share in each others joy and sorrow. They celebrate progress made, organs procured. And they mourn losses and setbacks. And they do this together.

I know from my experience as a patient, it is worse to be a family member; watching, waiting, hoping, praying. And to see how these families persevere, given great odds and uncertainty, is truly amazing to me. You’re never quite as alone as you may feel that you are.

I’ve also seen patients come back to visit nurses, to show their appreciation. Patients that were on the brink of death. And I’ve seen nurses smile such large smiles, a combination of pride and admiration, a side so rarely seen. And this is what it’s about. It’s not about what happens in the open, when doctors come to tell families how surgery went. It’s about the moments that happen behind closed doors; the moments when doctor, patient, family, nurse, and all others involved become one, coming together to make sure that the patient gets the best possible care and treatment.

Having seen it on all sides, it’s not easy, no matter which way you look. But it is possible. It is possible that all parties involved will have one common goal; to see the patient through this medical crisis. Despite the minimal information provided, I will say that in the unit I volunteer in, the patients are critically ill.   And I feel lucky that, given my own improvement in health, I am able to donate some of my time to others.

There are multiple sides to every story. What keeps me going is knowing that illness isn’t easy for anyone involved. It’s a journey, a constant evolution of learning and education. And because illness can be isolating, I think we sometimes forget that it isn’t just about us. It is also about our doctors, who try to help and heal us, our family and friends who try to support us, and even those naysayers, who try to make us feel like we are less human because we are sick. The patient experience is informed by all of these entities. And I’m not sure I would have been able to really see that if I hadn’t viewed things from the other side.

There are times in life when you do things, regardless of what may or may not come from such experiences.  Sometimes, in order to get, you have to be willing first to give.  Such is the case with my volunteering. I didn’t go in necessarily expecting to get something in return, and yet, I have. I have enjoyed this foray into the other side of things, viewing the chronic illness experience for perspectives other than that of the patient. And I think this experience has made me appreciate just a little bit more all of the people that are a part of my team, who help me live the best I can with lupus and rheumatoid arthritis.

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[…] I’ve looked at life from both sides now,

From win and lose, and still somehow

It’s life’s illusions I recall.

I really don’t know life at all”

- Joni Mitchell, “Both Sides Now”