Beauty... skin deep... etc etc

Just a quick post to say: hurrah for Sandra Dubose-Gibson - a gorgeous, bald, autoimmune beauty queen. Here's a quick story about her - I felt the need to share this story; it made me smile and I hope it does the same for you. Lets all go out there and bare our elbows and knees and bald heads and show our inner and outer beauty.

BTW - Does anyone know of a beauty queen with psoriatic arthritis? (Besides Jon Lovitz, that is?)

A great article about odds and illness

I just read this wonderful essay in the NYT by a regular guy - a guy who is at the same time a husband and a doctor - watching his wife having a chemo infusion for the first time. The article centers on the risks involved in chemo infusions of Taxol, a drug used to treat breast cancer, and the rare but potentially fatal allergic reactions to the drug.

I liked this article for two reasons. First, I think it addresses the fear that any of us who take Remicade, or any other strong and dangerous drug, experience. Infusion reactions are lurking possibilities that could occur at any time. The reaction to Taxol can be far more serious than those for Remicade, but the fear he and his wife experience echo my own.

Second, the addresses something that all of us with unusual illnesses struggle with. Odds.

The author, Dr. Peter Bach, writes about the risks and odds he has encountered with his wife during her fight with cancer:

Each time we heard “that rarely happens,” we knew that whatever it was – fevers requiring hospital admission, mouth ulcers that would stop you from eating, overpowering fatigue, hair coming back a different color – it could actually happen. Each time the odds were in our favor, but the odds on the other side were not zero.

Our disease, Psoriatic Arthritis, is not common - roughly only one in 200 Americans have it. Put one way, you could say we beat the odds when we got our diagnoses. But instead of making us feel lucky, I suspect beating the odds makes most of us feel more vulnerable. As someone with multiple diagnoses, I take each new ache or odd sensation a little more seriously - because I never know when I'll beat the odds yet again.

Dr. Bach puts it nicely.

The odds that Ruth would get breast cancer before she reached age 43 were about 100 to 1. Odds seem a lot different once you’ve come up on the short end.

Chances are I couldn't say it better - so I won't even try.

Selling the Ferrari

Infusion reactions are super fun, high speed adventures. Wheee!

Imagine this. You hop into your cushy Remicade lounge chair, get strapped up to the drippy machine and get on with your morning - checking email, snacking on a tootsie-pop and waiting for that mousie to make you feel better. (At least that's how my infusions start - don't yours?)

Then, out of the blue your face turns red, and your stomach starts to feel green (no pun intended). The room starts to look like it's been designed by Dr. Seuss and then - best of all - Horton comes and sits his big elephant butt down on your lungs. (At least that's how my infusion reactions start - don't yours?) In short, you can't breathe.

The Remicade team I know and love is fabulous - I have never seen two nurses move as fast as mine did that day when I waved and hooted and tried to scare the Grinch away. They shut my IV off, doped me up with Claritin, added a saline bag and hovered. And we waited.

This was last December. Like most reactions, mine went away within a few minutes, leaving me breathless and insecure.

I've come to rely on Remicade to work it's magic on my Psoriatic Arthritis. 2.5 hours in a chair with a movie, and I felt like gold for 5 weeks. My denial about the power of this drug has gone hand in hand with my denial about being sick at all. Fab Rheumy has been telling me not to play with fire - that I need to take this drug seriously. But I felt too good to be serious. Lalala and all that.

Apparently in clinical trials, 20% of people had an infusion reaction to Remicade, as opposed to 10% with a placebo. I could not find the study backing this data up - but the link made me sit up in my chair. Nearly as scary - a recent single center study of people on Remicade (for Crohn's) showed that 15% had serious infusion "events". That's a good enough number for me.

(an aside - I like the word "event". I certainly had the attention of the entire Remicade room for a morning - I felt like a bride).

I successfully had my infusion, and had one more infusion in January that went swimmingly. But it's hard to sit there to get doped up in order to trick your body into accepting a high powered drug. Every time I've thought about what I was doing to myself, it just felt... bad. My body is saying no for a reason, right? Why did I keep trying to force the stuff in? I guess because I like feeling better.

Long story short - a few weeks ago I got a visit from that damned blue elephant again, and we had to shut 'er down. And now I'm off Remicade.

(By now I know many of you don't care about my reactions - all you want to know about is my super duper Italian car! Ok. I'll tell you about it.)

Right about the time my doctor and I decided to take me off of Remicade, I saw this article. In it, Dr. Francisco Kerdel (a dermatologist from the University of Miami) is quoted as saying that inflixumab is a Ferrari. He warns other physicians:

"This is a high-performance vehicle, but you need to know what you’re doing... keep safety in mind from the start."

Then, Dr. Kerdel dragged me down to the used car lot, and showed me a car I might like better. Enbrel, the station wagon of biologics.

"Etanercept is like a Volvo. It’s not a fast car, it’s not a flashy car, but it’s a good, solid car that will probably work for you."

This metaphor, goofy as it is, was another reminder to me that I can take none of these drugs for granted. None of us can. Who ever thought putting boiled up mousie bits into our bodies was smart? It works... a lot of the time. And that is glorious. But what else can and does it do? I don't think anyone knows.

Sometimes I think I see Horton, off in the distance, driving his Ferrari into the sunset. I kind of want him to come back. I'm anxious about starting a new drug, especially after my experiences with Leflunomide and Remicade. Better the devil you know - right? Or no devil at all. But I can't imagine life without a biologic.

A sad state of affairs. Sounds like time for a new car. I guess this time it's a Volvo.

Lalalalalalalala I’m not listening!!!!!!!! (or, why I stopped writing for a long ol’ while…).

My mother-in-law is one of those people. You know – the ones who will give away the end of a movie. From out of the blue she hits you with it - we’ll be talking about groceries, or a new pair of socks, and she’ll blurt out, “oh, and the Sixth Sense? Did you see it? Bruce Willis is actually dead!”

Thus, I spend a great deal of my time with my in laws with my hands over my ears, chanting “Lalalalala” at the top of my lungs, trying not to hear about James Franco’s arm, or whether Annette and Julianne get back together. Childish, yes, but effective.

This immature avoidance strategy of mine has rubbed off on the rest of my life. If I just ignore things, they’ll go away, right? If I don’t know about what happens in the end, then the end might not happen, right?

That’s what I think happened with my blog.

I think it all started when I kept finding articles about how people with psoriasis and psoriatic arthritis are more likely to have heart attacks.

Coupled with similar research about other co-morbidities – it seems we’re at risk for tons of awful stuff – it was all I could do to even turn on my computer. If I don’t read it, it’s not true, right? And if I don’t write about it, it’s really not true. Right? Right?

Also, gladly, I started feeling a lot better last year, especially last summer. Riding my bike, goofing with my kids, going on business trips. Sure, I had to go get an infusion every 5 weeks, and take a fistful of drugs every morning, but who cares? I have been deep in my fantasyland of “normal”. And writing about my disease makes it harder to live in fantasyland.

Lalalalala. I can’t hear you. Sometimes, it’s a lot easier to pretend to not be sick.

Two things have happened in the few months, however, that have made me miss writing, researching, and connecting the psoriatic arthritis dots.

First, I’m sick again. More than just a little sick - I’m bunches sick. My platelets are acting erratic… probably from the leflunomide I went on 6 months ago. My hands and feet are perpetually tingly and numb. I’m tired all the time (it’s taken me three days to write this blog post). I’m discouraged, and I hurt. I had a terrible flare this last month – I woke up for 10 days in tears because of the needles some hobgoblin decided to stick into most of my joints. And now I’m on prednisone and I’ve turned into a domestic terrorist. I’m doubting my medical care, I’m doubting myself – even worse, I’m doubting the future.

I’m just too tired to stick my fingers in my ears anymore, it turns out. I have no energy to holler.

But the second thing that happened was a gift. In the middle of all this pain and hurt, I got an email from a new reader. I thought nobody read this blog anymore, and then this lovely person wrote me an email, telling me how much he appreciated my writing – that he knew how I felt. He reminded me that I wasn’t alone.

To you, reader dude, I say thank you – I know you didn’t mean to, but you reached down a hand and pulled me out a pit. You were my blog's phoenix capsule.

When you cover your ears and yell really loud, you miss stuff, it turns out. You miss the positive research findings (more on that later). You miss the comrades in arms. You actually miss the hope.

Recently, I've really missed the hope.

So I’m trying to write again. I might succeed, I might not. But I’m gonna try. Wish me luck.

But please, somebody, warn me if my mother in law is coming for a visit. I haven't seen "The Fighter" yet.