Wednesday, February 24, 2010

Patients For A Moment, #18

Welcome to the 18th edition of the patient-centered blog carnival, Patients For A Moment. The posts submitted were based on the following questions I posed to readers:

What’s Illness Got To Do With It?

What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?

Illness can be good and bad, and provide a wide range of emotions and experiences. For all, living with illness is a delicate balance, to be sure.


What would it be like without illness?

Kathy, from the blog Making Noises, describes in the form of a poem, how creative endeavors help her escape illness and allow her to be “a sick chick no more”, in the post, Behind the lens.

Duncan Cross, from the blog of the same name, describes his relationship with illness like Ike and Tina Turner, in the post What’s illness got to do with it? Duncan wishes that illness wasn’t part of the picture, but it is.

In the post Ahead in the Game, Behind in Life, Brittney of The Road I’m On, talks about what it means to be a veterinary student living with chronic illness. Without illness, she says she’d be ahead in just about everything, but illness makes getting ahead difficult.

Elisabeth Greenwood, from the blog Redefining “Good”, suggests that illness is always there, like a pet, creating an unbreakable bond, in the post Fessing Up.

Annie Martin, and the blog It’s Time To Get Over How Fragile You Are, takes the good with the bad in the post Life With A Side Of Illness or Illness With a Side of Life?

Thank you for letting me be myself

In the post To Be, Or Not To Be,…, Maria from My Life Works Today, explores her relationship with illness, and suggests that many of the uncertainties she faces would be the same even if she didn’t have lupus.

Helen, from the blog Pens and Needles, writes about the future and efficacy, or lack thereof, of contingency plans, and how we have to rely on ourselves and our innate ability to get through anything in the face of illness, in the post Big Plans.

In the post The kindest of friends, Sandra, from the blog Healing Environmental Illness, puts a positive spin on the illness experience by examining all of the lessons that illness has taught her.

In a thought provoking post entitled The Perverse Benefit of a Diagnosis, Lisa Emrich of the blog Brass and Ivory, describes how having rheumatoid arthritis gives her the possibility of trying medications that may potentially help her multiple sclerosis, as well.

Pain pain, go away…

In the post Making Pain Go Away, Barbara Kivowitz of In Sickness and In Health, explores the trials and tribulations of titrating the dosage of medication, and what it means to not be in pain.

Jolene, from the blog Graceful Agony, beautifully expresses that while chronic pain becomes a part of everything we do, it is simply what we feel and not who we are, in the post Feelings of Uselessness.

Fibro Mom, from Fibro World, explores the question of whether there is a cure for chronic pain, in the post Fibromyalgia Is Not For The Fainthearted.

And finally, Kelly Young, Rheumatoid Arthritis Warrior, explains What Is it Like to Live with Rheumatoid Arthritis? Part 3: Communication Failure, in a post that suggests how hard it is to explain RA and its varied symptoms to others.


Thanks to all those who submitted posts for this edition of PFAM. I really enjoyed reading them, and the insights that you shared.

The next edition of PFAM will be hosted by Duncan Cross on March 10th.

Monday, February 15, 2010

“Patients For A Moment” Is Here February 24th

I’ll be hosting the 18th edition “Patients For A Moment” – a patient-centered blog carnival created by Duncan Cross – on February 24th.

Here are my questions for this edition, which your posts should be related to:

What’s Illness Got To Do With It?

What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?

If you would like to submit a post, e-mail the following to

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, February 21st.

Looking forward to reading your posts!

Friday, February 12, 2010


I was a little late, and didn’t end up submitting something for the latest edition of Patients For A Moment (PFAM), which was hosted by Selena at Oh My Aches And Pains. Selena’s question for this edition was, Love? Hate? What are the four letter words you use to describe your life with chronic illness?

Despite the fact that I didn’t make it in time to submit, I thought this was a really interesting question, and wanted to take a stab at answering it.

So, if I had to come up with a four letter word to describe illness, it would be life (L-I-F-E).

First of all, illness is a fact of life. At one time or another, everyone becomes ill. For some, this isn’t until they are old and in their final days of life. For others, like me, it happens in our “prime,” which is definitely sucky, but can also be character building and teach us things we never even knew about ourselves.

In a perfect world, illness wouldn’t exist. No one would have to go through the things that so many of us do. But the world isn’t perfect, and neither are we…

I also use the word life because illness has had a broad ranging effect on my life, both absurd and profound. It has caused me to have innumerable identity crises, but it has also forced me to show strength that I never knew I had. You never quite know what you’re made of until you’re called upon to face a situation that shakes you to your very core.

Whatever I was before, and whatever I intended to be after, illness has become inextricably linked with my identity and who I am as a person. Illness is not all of me, but it is a very big part. And I have to be realistic. Illness is a part of my life now. That’s just the way things are.

And illness is a part of life in that it doesn’t just affect the sick person. The people in my life have been impacted by my illnesses, as well as I have. Probably not to the same degree, but illness is one of those things that shows people’s true colors – those who truly love you will be there, even if, especially if, you are ill. Those who don’t, won’t.

Illness has also taught me the capacity to feel (F-E-E-L) in a deep way. I think I’ve always been a caring, feeling person, but illness amps up the senses. Good feels better and bad feels worse. But at the end of the day, I know that I am not numb to the world around me. I feel joy and pain; I am a part of it. Because that’s life…

I guess I might use another four letter word, suck (S-U-C-K). Lately I’ve become very adept at telling things (and people, but not to their faces) to “suck it.” Very mature, I know. Because the truth is, illness can suck. It can also suck the life out of you, physically and emotionally. But rather than concentrate on the negative aspects, I would rather focus on the fact that despite everything I’ve gone through over the past few years, and the fact that things do suck at times, I’m living. I’m alive.

And with every day more I spend on this journey, I’m learning that illness and life are not diametrically opposed to each other. There can still be life in the face of illness.

So, for better or for worse, this is my life…and I’ve only got one…so I’ve got to live with what I’ve got…

On a side note, be sure to check out Selena’s edition of PFAM. And I’ll be hosting PFAM on February 24th. You can base your posts on the following questions: What’s illness got to do with it? What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?

Saturday, February 6, 2010

The Sacrifices We Make To The Medication Gods

I’ve been a bit absent from blogging lately because I’ve been waiting to get some closure on some issues I’ve had with Methotrexate (MTX).

MTX is the first medication from which I’ve seen tangible improvements in my arthritis. My pain is greatly diminished, and my joint mobility has visibly increased. So you’re probably wondering, is there a “but”? Yes, unfortunately, there is…

My rheumatologist’s office called me a few weeks ago to tell me that my white blood cell (WBC) count was low. Then they called last week to tell me that my WBC count was still low and my liver levels were up.

So off the MTX I went. A week and a half off of it, my elbows won’t bend all the way, my fingers are stiff and swollen, and my right hip is back to hurting on a daily basis.

I’m not going to lie. Being on MTX hasn’t been all butterflies and rainbows. There’s the tell tale nausea and dizziness. And I’ve gotten to a point where I wonder whether sleeping my life away is worth not being in pain. It causes the kind of fatigue that no amount of coffee can kill, the kind of fatigue that you have to submit to because it’s too great to fight it.

That’s why this situation has been all the more frustrating. Aside from marked fatigue, I have felt pretty good. So why couldn’t things, just once, go smoothly? It’s so frustrating to find a drug that actually works in some ways, but is simultaneously killing you…

So I’ve been going to the hospital once a week for the past six weeks to get my labs drawn. That’s not the ideal thing to try and diminish the primacy of illness in your life. It gets really old, really quick.

(And to add insult to injury, my doctor’s office somehow managed to give me the wrong lab requisition form, so I had been getting the incorrect labs done for several weeks. But that’s a whole other story…)

I am certainly not someone who loves to be on meds, especially the heavy duty ones I am currently taking. But I know that I wouldn’t be functional without them. Every time I have a flare, I’m reminded of just how bad things can get, and the meds seem like a small price to pay.

And oh, there are the sacrifices that come with prednisone. But the thing is, as much as I hate the side effects, I am always reminded of its wonders when I’m experiencing crippling pain – and I finally have to concede and take it. A few hours after I take it, I no longer feel like my body is made of lead. I know that prednisone doesn’t work this way for most people, but for me, I can take 10 mg. every once in awhile and I seem to be able to fool my body into thinking that it’s going to be getting more soon, but it doesn’t. And I always feel like an immobilizing weight has been lifted off my shoulders.

It also seems to me that any medication that says it will cause lack of appetite has that effect on me. Or causes really weird food cravings like my fixation with baked Cheetos, boxed macaroni and cheese, and orange juice – viva la orange – which thankfully, has finally gotten to the point where the combination is no longer appetizing and just makes me nauseous. Because that was a weird phase for awhile.

And lately, I have been so spacey. I can only hope that blaming it on MTX is truly the problem. In my first few weeks on MTX, I screwed up the appointment days/times of four appointments. That is not like me at all. But maybe my brain has ceased to function when it is not working on overdrive to cope with pain.

What I wish healthy people understood, is that none of these drugs are a cure. Every medication has its pros and cons, and I don’t think it’s ever an easy decision to make to start a new medication, especially one that is more aggressive than anything else you’ve tried.

It’s like, if the disease doesn’t kill you, the medication will. But society doesn’t view people who are on a lot of medication, for whatever reason, in a positive light. I was particularly frustrated watching “The Biggest Loser” a few weeks ago. The main doctor on the show made the main goal of achieving health to be being on as few medications as possible. It’s a nice thought, but in reality…

And all everyone seems to want to know is when I’m getting off MTX. I don’t know, and honestly, right now, I don’t really care. Yes, I would very much like to get off the meds, all of them, but right now, to me, feeling good is more important than some lame goal of banishing as many medications as possible from my medicine cabinet. I need to get my health in a stable place, which it hasn’t been in for the past several years.

I wish I could have the illness disclosure conversation and say that lupus and rheumatoid arthritis rear their ugly head once in awhile, but other than that, they don’t mean much. But that’s not the case. So for right now, for me, living well means taking a bunch of pills everyday in the vain hope that I can lead a semi-normal existence.

I heard from my doctor’s office yesterday that my labs (finally) came back normal. What a relief!

So for now, I’m back on MTX, and redoing labs in two weeks. We’ll see how long this love affair lasts…