Friday, May 22, 2009

In Which I am no Longer Cinderella at the Ball

This is not a maudlin post.

My life is GOOD. I'm very lucky in so, so many ways.

I do, however, have a continuing battle with a combination of fibromyalgia and what appears to be something akin to psoriatic arthritis. They strike separately, and they strike together, sometimes far worse than at other times.

I've tried to keep both at bay for 7 years using a combination of moderate exercise, tons of water, as few processed foods as possible and, when the pain gets really bad, a mega course of advil for a couple of weeks until things get better.

Starting in January of this year, however, things didn't get better. And the usual routines weren't working. And my rheumatologist had been dangling other, stronger, things in front of my face (he tends to be very conservative on drug usage, but he also doesn't want permanent joint damage). I tried other things, too. But this isn't a post about my health, and if anyone's really interested because they're going through a similar struggle, please just e-mail me.

Okay, so the long and the short of it is that after months of other therapies and constant pain (part of the reason for my hiatus), I tried the very mildest of the dangled drugs. And this drug came along with what's known as a steroid "burst" (a short course of steroids, to sort of "jump start" the other stuff).

And I was Cinderella at the Ball.

And what this is really about is that steroids cheat.

Within 24 hours, I was close to myself again. My energy was back; my pain all but gone. I was sure that the new drug was going to be helping far earlier than my doctor had anticipated.

For 18 days, I lived a blissfully pain-free life. Then the pain started creeping back. Now, it's returned.

I'm back to my natural therapies (along with the mild drugs). I'm still on a teeny dose of steroids that I continue on for a few more days (I've "tapered down"). I'm determined to stay away from the advil, if I can, because it wreaks havoc with other things.

But this whole incident got me very, very sad for our world.


Well, I'm all for drugs to be used when they can help with diseases, be those diseases mental or physical.

But how many athletes have been involved in steroid scandals over the years? How many folks now are taking Adderall and Ritalin not because they need either one, but because they can stay up later, study harder, get better grades.

You know what, y'all? That's cheating.

If a closing-in-on-fifty, fat, high school English teacher can end up feeling like frigging Cinderella at the Ball and waltzes through more to-do lists than any human being should when on steroids, what is the 20-something, athletically-gifted batter doing? The cyclist, who can now ace the Tour de France? The football player who bulked up over the summer?

What about the kid who just got into Columbia or Harvard or Princeton and probably doesn't deserve that spot? What about the kid who didn't cheat and lost that spot that they actually did deserve?

C has been doing a project on Malcolm X this week. We've both been immersed in all things X, because I've long been fascinated with his life story and it was interesting to watch Spike Lee's "X" with C, and to have access to The Autobiography of Malcolm X, the reader of pieces on and about Malcolm X, and the other research materials we've had lying around the house. Malcolm X spoke a great deal about keeping the "white man's poisons" out of one's system. A lot of this is Islam - not about your skin color, but about the fact that there are substances that should not be ingested. They make you impure.

Steroids and stimulants make you impure. They kick you up a notch. We weren't made to be kicked up that notch and it's not fair to your body or to others when you take this crap just to be "better".

Have you had any experiences where you've been Cinderella at the Ball? Know folks who've gotten themselves in trouble with steroids or stimulants? What's your take on all this?


painted maypole said...

very interesting.

i was sick FOREVER this past fall... thought it was allergies but then it dragged on and on and then I became dependent on Afrin so I finally went to the dr. who told me I had one hell of a sinus infection (that did probably start as allergies...) So in addition to my round of antibiotics and a different (non dependency forming) nasal spray she gave me a steroid shot, after warning that they don't give these often, but seeing from my records that I hadn't had any in my nearly 4 years of being a patient there.

I had a performance that night.

and for the first time during that run I felt good. GOOD. I didn't have to use the Afrin. I went into tech week for my next show. And still I was dancing around the room. The Afrin was in the garbage can.

I'm glad I did it. But you're right... on any sort of regular basis or to be used to get ahead it would be... well, cheating. For me it helped kickstart the road to recovery. Which I needed.

What it actually taught me is that I need to go the dr. much sooner when I am sick. To get on the regular stuff... antibiotics and all.

Luisa Perkins said...

What a courageous post. This is why I don't do caffeine; I feel it is a highly addictive stimulant/cheat as well.

I'm now waiting to be pilloried by all my coffee-loving friends.

Anonymous said...

I appreciate your honesty in this post. I have similar problems. I notice when I switch to a more vegetable based diet and move around more, I feel better. Especially yoga like stretches. It really helps the joints. When my weight is normal I feel better too. Thanks for writing this :)

April said...

First, I hope you feel pain-free again very soon.
As far as the drugs, yes, I'm totally addicted to coffee. But I think in all, we don't get to spend as much time or energy on appreciating the journey. Winners take all. That whole good, better, best thing. Maybe if we re-valued what we idolize, the cheaters wouldn't feel the need as much.

nyc/caribbean ragazza said...

I hope you feel better soon.

I think our culture of bigger, faster, better + the big money in sports encourages athletes to do whatever it takes to get ahead.

The long terms impact of steroids are not known so many of these folks are playing with fire.

Korie said...

I'm sorry you're still hurting. I hope you can find something that works for you soon.
The only experience I've had with steroids was nasal sprays for allergies and once via IV for strep throat/tonsilitis. And yes in that case, they made me feel fantastic, but at the time I'd had a 104° fever for nearly a week and was in danger of choking on my tonsils in my sleep.
So they didn't make me feel like Cinderella, but they did make me feel healthy again.

Karen Olson said...

I'm so glad you posted this. I heard an NPR report about college kids taking Ritalin to help them study and was appalled. Who knows what sorts of side effects will show up in the future?

I'm so sorry for your pain. It's difficult to live with something so chronic that I can imagine how exhilarating it was to have that brief respite. I feel very lucky that I've been relatively healthy in my life and have not had any Cinderella moments (except in college, I guess, but I won't go there and it wasn't helping me study...).

And for all those athletes who use steriods, they should be ashamed of themselves and deserve any punishment they may get.

Acedog said...

Stimulants are the "all American drug." They fit the cultural imagination to a T. Think of it: endless energy, 24/7 ambition, even the resulting paranoia fits into our political tradition (Red Scares, Terrorism Scares, etc.). One could continue with the comparisons, especially if our somewhat abbreviated attention span is taken into consideration...Constant movement, even agitated movement is very much in keeping with American cultural mythology. ADD and Westward expansion, Empire, and a 24 hour new-cycle, all evidence of our embrace of a stimulant-consciousness.

Hope you are feeling better!

Momisodes said...

You raise a very interesting point. My father, who suffers from rheumatoid arthritis, felt the same way about the cortisone shots his doctor offered. They were much like steroids in that his range of motion was back and pain subsided, but it never lasted.

I'm so sorry to hear your pain is back. I hope that in time, you will find something that will help ease the pain successfully.

Eleonora Baldwin said...

Sorry to hear of your ailments, Jen. I hope you can recover quickly, and with the least possible pain.

Steroids killed a man. Marco Pantani (known as il Pirata) was a healthy young Italian cyclist who had 1900 HP engines in his thighs and could climb up a steep Alpine hill on his bicycle effortlessly. He was pure and naive. Young and enthusiastic. His smile was legendary. He won title after title, reaped trophy jerseys and was the idol of many. He renewed the love for this vigorous sport to Italy, one historically famous for it. This until that unfortunate race. He was routine tested and came back positive to steroids. He was disqualified amid protests and his constant denial of ever having been administered anything. Had he been framed, or was there foul play? The mystery was never solved as his career slowly began to wane. He died 3 years later, by his own hand, feeling he had been unjustly accused and crushed by the media that tore him from the Olympus to the gutter.

anno said...

When someone is suffering with chronic pain, it's hard to call the choices they make a cheat; they're more an assist, and I'm glad there was something you could do to help yourself through some difficult times. But I'm also glad, that you might be now in a place where you can take care of yourself in a more sustainable way. I hope you're feeling better soon.

w said...

I try to avoid medicines (even antibiotics) as much as I can. They have side effects and end up sorting out something but ruining something else. I have heard too that after a while the body gets used to them and then they are no longer effective (at least with antibiotics but I guess it wouldn't be that different from other medicines).

Have you tried yoga? just an idea...maybe if you discuss it with your doctor he/she might be able to tell you if it could help or not.

Becca said...

It's frighteningly easy to allow drugs to become a way of life, and I think most people have no idea of the dangers.

Using prescription drugs are like anything else in life - moderation and knowledge is the key to making it work.

I hope you find a regimen of medication/natural remedies that works for you :)

Jen said...

PM, I was only referring to times that things aren't medically necessary... but there's no doubt the energy/euphoria level is pretty out there.

Luisa - fascinating. I DO drink coffee. Usually 1 cup per day. I love that cup, though. Good point about the stimulation.

Maryann - I hear you on all of that. The weight issue for me is very frustrating. I keep plugging away at it, though. Speaking of icky substances, I gained a lot of my weight while on a med I was later told I didn't need. Grrr...

April, I think my point was revaluing, too. That's it. I just think we have so much emphasis on bigger/better/prettier, whatever...

NYC - ditto what I said to April and amen on the playing with fire.

Lilac, when you're that sick, feeling better IS like being Cinderella, I think. I had to take them once for a BAD bronchial thing and had a similar experience.

Karen - I agree on the ritalin. It terrifies me that kids (and some PARENTS are pushing them to do it!!!) are "using" this stuff to get ahead. And I think I heard a little of Annie in you on the statement about the athletes. ;-)

Acedog - points well taken. And I am, thank you - just by moving a lot and drinking (water) a lot. And a great chiropractor.

Momisodes - it's been trial and error. I think the main cycle was broken, though, and that is great.

Lola - and that's the flip side. We just assume, now, that if someone is "too" good, then they must be enhanced. As I said, it cheats everyone.

Anno - I never feel it's a cheat medically, it's just those who don't "need" something, but enhance with it, that drive me nuts. But yeah, I want to work on sustainability without putting poisons in my body - seems like a good goal. ;-)

Thanks for the suggestion, La Delirante - I have actually tried yoga, tai chi, etc. There are so many forms of yoga out there that I should see what else might help. Tai chi helped some - I should get back into the practice. Nia was good exercise, too.

Becca, thanks for the well wishes - that's what I'm shooting for!

Anonymous said...

I'm so sorry that you have to deal with this stuff. It can be so frustrating to not feel good at all even when you know you are doing your best.

I had cotisone shots twice...once in a frozen shoulder and it did nothing for me...the pain was still there and I needed to go under general anesthesia for the doctor to literally rip apart the scar tissue that had formed from an accidental fall I had. The second was in my knee for my torn meniscus, and although I am not feeling like Cinderella, it has been a year and it has worked...not entirely pain free, but MUCH less pain (the damn shot made up for the pain though...never again!)

It served its purpose. Anyone who takes steroids for reasons other than strictly medical needs to be counseled BIG TIME...if they feel that kind of need, there are some major issues in their life that need to be dealt with posthaste!

DO feel a bit better...I hope the sunshine a warmer weather will help.

Betsy said...

I have been thinking about your post since I read it yesterday afternoon. Came here to raise the caffeine question, especially since I've recently fallen off the wagon after 9 caffeine-free months, but Luisa beat me to it.

I love Anno's response and completely agree with her. If one turns to steroids / stimulants just to enhance performance and not to improve quality of life then it's a cheat. But others who are suffering with chronic pain have a right to choose how to manage that pain and improve their quality of life.

I'm sorry that you've been hurting lately! Hope that things improve for you soon! Sending you a big, gentle hug!

Unknown said...

I am so sorry about the pain you have to deal with - and I so understand your post. I had horrible sinus issues for a year and by the time I saw a specialist who could help me, the treatment included five days of steroids. I felt like Super-Woman - reorganized closets in a night instead of the customary weekend projects that they usually are with me.

Oh said...

Dear Jen, thanks for your awesome note on my blog. I continue to be amazed at our "likeness" because I've developed arthritis in both knees and lower back. Dammit. Motrin isn't helping. Exercise, not so much. Tons of water? Moving around on the planet? Yes. Reduced sugar intake? somewhat. So I'm working on the weight thing and was on the verge of talking to the doc about some kind of drug and voila - here's your blog. I have a horror of ingesting anything pharma related, including over the counter stuff. I'll see what the doc says. IN the meantime, HM is having me use castor oil massages on my knees. Yes, I think it helps. And we're looking into other naturals that might help.

Hope you're doing well and having a gladsome long weekend!
And so glad to hear about your Mom being in a great new place, too!

Núria said...

Hola Jen! I can feel your fist closed in rage while reading the post!!!

I am not the one to say anything about it... I never feel my body... I mean that it always works so well. I'm really lucky, I know! On the other hand, my husband's body is no good and he is so much against pain, therefore so much into drugs that avoid pain. I do understand that!

I feel sorry for you darling!!!! I hope that you get better soon :D


My cousin was a 2-time Olympian. I saw how hard he worked every day and how restrictive on his diet and activities he was. But he never took steroids. I do believe he would have been a medal contender if he had. But he was not willing to harm the body he worked so hard for or compromise his values. I do believe he was the winner in the end.

Dingo said...

Hey Girl, I thought I'd responded to this already so if you get two comments from me, it's because my brain has taken a break over the holiday weekend.

I think it must be hard for some people to draw the line between taking drugs (whether they be steroids or pain relievers) to alleviate pain and then once that pain is diminished to keep taking them because they improve your performance or some other quality of life issue. It's sad that our values as a society have deteriorated so much that athletes as well as your average joes feel that they can't compete in the workplace or athletic field without some assistance just to keep up with those who do.

I hope you feel better and find something that works for you. Maneuvering through the health care system and the options (or sometimes lack thereof) must be daunting.

Jen said...

Hotmama - I'm doing much better - thanks for your kind words. I've heard what you've said about the cortisone shots from others, as well.

Betsy - how do you feel differently falling off the caffeine wagon?

City Girl - I'm so sorry you went through that sinus horror, but glad it's much better now.

Oh - so sorry you've had arthritis pain. Feel free to write me off blog to discuss strategies.

Widney - your cousin is the type of hero we need.

Dingo, I'm really hanging in there. I couldn't agree more that it's our values that gives us these skewed ideas of medicine as enhancement.

Nuria, I'm delighted that your body works so well - everyone should enjoy that! ;-)

glamah16 said...

Wow! I hope you find a solution and get a handle on this. Drugs and I dont do so well. I broke out to morphine in the hospital after surgery.CS said all the other stuff made me crazy. I barley remeber. It takes a while to even justify a Aleve for a cramps.