more on the methotrexate shortage (and a short rant)

Methotrexate Teva 100mg_ml 1x50ml -pakning

Methotrexate Teva 100mg_ml 1x50ml -pakning (Photo credit: Haukeland universitetssjukehus)

I stumbled across this article from the Grey Lady via Rheumatoid Arthritis Guy on the critical need for more methotrexate. The article says, in part:

“This is dire,” said Valerie Jensen, associate director of the Food and Drug Administration’s drug shortages program. “Supplies are just not meeting demand.”

The drug is methotrexate, and the cancer it treats is known as acute lymphoblastic leukemia, or A.L.L., which most often strikes children ages 2 to 5. It is an unusually virulent cancer of white blood cells that are overproduced in bone marrow and invade other parts of the body.

The cancer commonly spreads to the lining of the spine and brain, and oncologists prevent this by injecting large quantities of preservative-free methotrexate directly into the spinal fluid. The preservative can cause paralysis when injected into the spinal column, so cannot be used for this disease. Methotrexate is also used to treat rheumatoid arthritis.

Ben Venue Laboratories was one of the nation’s largest suppliers of injectable preservative-free methotrexate, but the company voluntarily suspended operations at its plant in Bedford, Ohio, in November because of “significant manufacturing and quality concerns,” the company announced.

Since then, supplies of methotrexate have gradually dwindled to the point where oncologists now say they are fearful that shortfalls may occur at many hospitals within two weeks.

I’m not really sure what’s going on with the manufacturing of MTX. According to the FDA, several companies that make the injection form of the drug simply decided to stop making vials of certain sizes. I don’t know why and haven’t been to be able to find much information about it. I’m generally not a conspiracy theorist and tend to (want to) believe people will do the right thing, but there doesn’t seem to be much reason for creating a shortage of a drug that treats childhood cancer—and several autoimmune diseases.

Which brings me to my short rant. Just a post script for the N.Y. Times: Many of us are on methotrexate, and we don’t all have rheumatoid arthritis. We have lupus and psoriatic arthritis and ankylosing spondylitis and so many other diseases. Maybe a better way to note that MTX doesn’t only treat cancer is to say that people with certain kinds of autoimmune conditions—like R.A.—also take the drug. Just saying.

standing on a mountain looking down

The thing about working in a community newspaper is you always have to be on.

As the editor of a small weekly, I am a champion, punching bag, easy target, reporter, photographer, layout designer, copy editor, information source and more that I’m probably forgetting.

My picture’s in the paper twice—once in our staff box and once in my weekly column—so there’s nowhere to hide. There are no days off; I’ve been stopped in Walmart more times than I can count by readers or sources who want to sound off.

The biggest thing, though, is a mixed blessing: People see the paper as their paper. Each little thing that happens in the community, why, that should be in the paper! And, as the editor, my policy is to say, yes—though that yes may not take the form the person asking wants.

Regardless, it can all be a little overwhelming, especially with elections (tomorrow, eek!) and small-town sports and all the great things that happen in my town.

It may sound like I don’t like it, but actually it’s really invigorating. I think know that people don’t realize exactly how much goes into putting the paper together every week—and how it’s just me, essentially, and one other reporter doing everything except the ads.

But even though I’m still at work now sitting in a school board meeting, ready to finish out what I’m sure will be a 12-hour day, and even though tomorrow promises to be just as long if not longer, I am ready. I’ve got eight bylines this week, and my reporter has as many, on everything from a high school attendance program to a cross-country state championship. I’ve got election coverage to get in Wednesday’s paper for four races and a county referendum.

And we’ll get it all—and it’ll be interesting, pretty to look at and compelling.

So, get ready, Tuesday; we’re coming for you.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

keeping up

via Glamour

So, apparently Kim Kardashian has psoriasis. I’m not so sure I like the tone of this L.A. Times blog post, but at least the writer mentions it is an autoimmune disease (though the off-hand mention of methotrexate as a treatment for it leads me to believe someone didn’t quite do his homework, despite the mention of the National Psoriasis Foundation’s website). But, I digress.

I was lurking on some of my psoriasis boards, and I came across something interesting—and it was the same on pretty much every forum I visited: People universally wanted Kardashian to step up and use her notoriety to gain some recognition and awareness for the disease (as if showing the entire world [that watches "Keeping Up With the Kardashians," at least] the moment of her diagnosis wasn’t enough). I was pretty surprised at my reaction.

I completely disagreed with them.

I know, right? Isn’t that exactly what I’m trying to do with my little blog? Sure, it is. And it would be awesome if she decided to become a spokeswoman for the NPF. I would be right behind her. But I’ve had psoriasis for more than a decade, and it took most of that time for me to accept it, to be willing to talk about it with others. How can I expect someone else—regardless of where she falls on the obscurity-fame continuum—to be I bigger person than me? To be braver than me? Hell, I still blog under a pseudonym, and she let perfect strangers into her doctor’s office with her, let them watch her reaction to finding out she has a lifelong autoimmune disease.

Honestly, I think even if she didn’t lift a finger to raise any more awareness about psoriasis, I’d say she’s done quite a bit. After all, we’re all talking about it, right? And so are quite a few people. Searching Google for “Kim Kardashian psoriasis” brings up about 554,000 results. Yowza. So, right on, Kim.

we, the patients

I think just about everyone who deals with chronic illness has had at least one terrible doctor. I know I have: I’ve had a dermatologist who told me psoriasis is only a skin condition and was the result of a reaction to using a new shampoo (both wrong, by the by), and I had a rheumatologist who only wanted to treat me with pain pills (which is horrible for so many reasons).

Everyone has the right to adequate medical care, and part of that is seeing a doctor who is willing to work with you; of course, the patient must be willing to shoulder some of the burden for his or her own health, too. So, the National Psoriasis Foundation Medical Board and Board of Trustees worked with Dr. Jerry Bagel, director of the Psoriatic Treatment Center of Central New Jersey and a clinical associate professor at Columbia University, to create a patient’s bill of rights to make sure both doctors and patients know their responsibilities in making sure psoriasis and psoriatic arthritis are properly treated.

Some of the highlights are:

  • People with psoriasis and/or psoriatic arthritis have the right to receive medical care from a healthcare provider who understands that psoriasis and psoriatic arthritis are serious autoimmune diseases that require lifelong treatment.
  • People with psoriasis and/or psoriatic arthritis have the responsibility to be actively involved in managing their disease by participating in healthcare decisions, closely following treatment plans recommended by their healthcare providers, and making healthy lifestyle choices to ease their symptoms.
  • People with psoriasis and/or psoriatic arthritis have the responsibility to be honest with their healthcare provider about their health and lifestyle decisions that may affect the success of his or her treatment plan.

The rest of the document is filled with other good expectations for doctors and patients. I hope this helps doctors and patients communicate with one another and realise that we’re all on the same side—or, at least, we should be.

time to end psoriasis

The United States Capitol in Washington, D.C.

Image via Wikipedia

Guys, the National Psoriasis Foundation’s National Volunteer Leadership Conference (if you follow me on Twitter and saw a lot of #psonvlc, that’s what it was referencing) was awesome—and a great excuse to take a few days off work and hang around Washington, D.C. I’ll write more about the trip itself—and its impact on me, health-wise—later.

The conference was really great; there was an exhibit hall with vendors and information, all kinds of breakout sessions on everything from raising awareness to raising money and—of course—the big event: Climb the Hill for a Cure day, when psoriasis advocates hit up their Congressional representatives for support of the Psoriasis аnd Psoriatic Arthritis Research, Cure, аnd Care Act of 2011. (I was unable to go to that, unfortunately, since Tuesdays are a big day in newspaper-land.)

The breakout sessions I attended were on raising awareness on social media and in the traditional media (I actually got to talk a bit about being a blogger and the editor of a newspaper, though the latter half on newspapers was more of a rant on what annoys me and leads me to not publish things in the paper), a round-table discussion with some of the other mentors in the One to One program and a presentation on the highlights of psoriasis research and drug development. If you guys want, I can post my part of the social media presentation here; I’m also trying to get a hold of the PowerPoints from some of the other presenters, since I’ve had requests from people who weren’t invited to the conference. If and when I get them, I’ll post ‘em here, too.

But one of the coolest parts of the conference was meeting so many amazing people, like Marie B and Kathryn and Chris, mum to Carly and Katelyn. It was so refreshing to be in a room with people who get it, who have gone through what I’ve dealt with because they have psoriasis or they have psoriatic arthritis—or they know and love and support someone who does. I left the conference feeling like anything was possible. Just a few days later, I’m struggling with putting that feeling into action, but if nothing else, I left feeling hopeful. And that’s a good start.

#HAWMC day 21: run lindsay run

Though there are many people I admire online and off, I want to stop and give props to someone I met through blogging: Lindsay of RunLindsayRun fame. (She also has a mostly gluten-, dairy- and sugar-free food blog.)  Lindsay is pretty kick ass; she owns her own business, she’s a mommy to an adorable toddler, she’s a wife—the list goes on and on—and she does it all with rheumatoid arthritis and fibromyalgia. She’s also kind, sometimes snarky and outrageously funny. When I first discovered her blog, I remember quickly devouring her archives; by the end, I felt as though I knew her.

Lindsay is hardcore; she puts herself out there on her blog: her triumphs, her failures, stories that don’t show her in the best light. She doesn’t make light of her conditions, but she shows how she’s living well in spite of them. All in all, her health activism is one of the best kinds: a life well-lived, surrounded by people she loves and who love her. She shows that it is possible to have an awesome life, even while you’re struggling with the pain, fatigue and, yes, heartache of chronic illness.

So, here’s to Lindsay: Keep on keepin’ on!

Walk to Cure Psoriasis

I’m going to go out on a limb and say that pretty much everyone who reads this blog either has an autoimmune disease or knows someone who does (or has stumbled upon it because I often use song lyrics for blog titles. Oops.). That means we all know the effect arthritis or lupus or AS can have on people we care about, and most of us know how expensive and exhausting it can be just to feel normal. We know how many pills and shots and infusions we need to sometimes just tread water. And I think we can all agree that the most important thing would be a cure for all of these autoimmune diseases.

And—at least in my case—that’s why we walk. We pull our protesting bodies out of bed too early on a Saturday morning to walk 5K. We harass ask our friends and families for funds. We write letters to the editor trying to raise community awareness.

Which brings me to my point: I am walking in the 9 April Raleigh, N.C., Walk to Cure Psoriasis. I would love to have more support. Here’s the email I sent out to friends and family:

Dear friend,

I am asking for your help with a cause that means a lot to me: improving the lives of people with psoriasis and psoriatic arthritis.  In my efforts to make a difference, I am participating in the Walk to Cure Psoriasis.

I believe most people would be surprised and saddened by the impact of the disease and the lack of awareness about how difficult it is to live with. Psoriasis is more than a simple skin rash.  It often can encompass major areas of the body and can even become debilitating.

As many as 30 percent of people who have psoriasis will also develop psoriatic arthritis, which is a very painful and potentially crippling form of arthritis.  In addition to the skin condition, they have to deal with intense joint pain, swelling and other symptoms that limit their ability to carry out the routines of daily life.

More than 7.5 million Americans have psoriasis, yet very little is being invested in public education or research for a cure.  I am asking for your help.  Through the Walk to Cure Psoriasis, we will bring in money to help find a cure and create public awareness about the disease.

Please support me by donating online or joining me on my walk.  Your help is greatly appreciated.

Or, join in at a walk near you!

poetic license

I was reading Sharon’s blog this evening. She mentioned Laura Hershey in her most recent post and a poem Hershey had written. After getting lost in Hershey’s writings and mourning her loss (she was only 48 when she died in November) and the fact that I stumbled across her work too late, I went on and read the poem. It definitely hit home for me—I’m going to print it out and tack it to my wall at work—and I hope you all enjoy it as much as I did.


You Get Proud by Practicing
By Laura Hershey

If you are not proud
For who you are, for what you say, for how you look;
If every time you stop
To think of yourself, you do not see yourself glowing
With golden light; do not, therefore, give up on yourself.
You can get proud.

You do not need
A better body, a purer spirit, or a Ph.D.
To be proud.
You do not need
A lot of money, a handsome boyfriend, or a nice car.
You do not need
To be able to walk, or see, or hear,
Or use big, complicated words,
Or do any of those things that you just can’t do
To be proud. A caseworker
Cannot make you proud,
Or a doctor.
You only need more practice.
You get proud by practicing.

There are many many ways to get proud.
You can try riding a horse, or skiing on one leg,
Or playing guitar,
And do well or not so well,
And be glad you tried
Either way.
You can show
Something you’ve made
To someone you respect
And be happy with it no matter
What they say.
You can say
What you think, though you know
Other people do not think the same way, and you can
keep saying it, even if they tell you
You are crazy.

You can add your voice
All night to the voices
Of a hundred and fifty others
In a circle
Around a jailhouse
Where your brothers and sisters are being held
For blocking buses with no lifts,
Or you can be one of the ones
Inside the jailhouse,
Knowing of the circle outside.
You can speak your love
To a friend
Without fear.
You can find someone who will listen to you
Without judging you or doubting you or being
Afraid of you
And let you hear yourself perhaps
For the very first time.
These are all ways
Of getting proud.
None of them
Are easy, but all of them
Are possible. You can do all of these things,
Or just one of them again and again.
You get proud
By practicing.

Power makes you proud, and power
Comes in many fine forms
Supple and rich as butterfly wings.
It is music
when you practice opening your mouth
And liking what you hear
Because it is the sound of your own
True voice.

It is sunlight
When you practice seeing
Strength and beauty in everyone,
Including yourself.
It is dance
when you practice knowing
That what you do
And the way you do it
Is the right way for you
And cannot be called wrong.
All these hold
More power than weapons or money
Or lies.
All these practices bring power, and power
Makes you proud.
You get proud
By practicing.

Remember, you weren’t the one
Who made you ashamed,
But you are the one
Who can make you proud.
Just practice,
Practice until you get proud, and once you are proud,
Keep practicing so you won’t forget.
You get proud
By practicing.

awesome blog by an awesome girl

My friend Beth has started/re-started her blog, but with a new moniker: Sticks, String and Side Effects (which I love, PS!). In her own words, here’s what it’s about:

These are the musings of a twenty-something North Carolina girl transplanted to the ‘burbs of DC. An archivist/transcriber by day and avid knitter/beginning spinner by nights and weekends, and doing it all living with SLE (Systemic Lupus Erythematosus), fibromyalgia, and major depressive disorder.

She’s got an awesome knitting post and one about living with chronic illness (which, for most of us, means taking several pills just to function).

So, what are you waiting for? Check it out!

be here for me

National Public Radio

Image by Kim Smith via Flickr

I was listening to my local NPR station driving home from my parents’ house the other day. A rerun of the day’s “State of Things” was playing, and as it was the run up to Thanksgiving, they were talking about gratitude. I don’t remember how the panelist got on the subject, but she said something to the effect of this: If you’re helping me because you pity me, go away. But if you want to help me because you see my struggle, you are welcome.

I found that really powerful, like someone vocalised exactly my own thoughts. I’ve read and talked to so many people (not just those of us with chronic illness) who struggle asking for help when we need it. I know I do. I also tend to snap when someone offers  me help when I don’t need it. And I think I may have figured out why (or at least part of the reason why). So much of the time, it seems people offer help because they feel sorry for you or they think you can’t do whatever it is you’re struggling with or some other reason that makes you an object of pity. And just because we’re sick doesn’t mean we can’t see that.

Sure, I can’t open a jar, turn a door knob, sit in a car for long periods of time without pain. I can’t run or wear high heels or even some days button a button. But there is still a lot I can do. And just because I can’t do those things—and I don’t necessarily know at a given time whether I’ll be able to do those things (and others) or not—doesn’t make me useless or helpless or any less of a person.

No one wants to feel like they need help all the time. Or, at least I don’t. And on those occasions I do need help, I don’t want to feel like you’re doing your good deed of the day by opening a jar of spaghetti sauce for me. But if you see I need help, lend a hand and move on, I will notice and I will be grateful. And, to boot, I’ll get to keep a little bit of dignity.