Prednisone -- Some Positive Ruminations

Many years ago, and for many years, I lived in another country.

I pride myself to this day, perhaps erroneously, for having a little bit of dual vision.

I'm an American, but sometimes I can step back and also look at the expectations and behaviors of Americans from the perspective of a non-American, someone who wasn't raised with the sunny expectations and hopes with which we are raised in the U.S.

One of our expectations, I think is that everything should go our way, all the time, with no costs involved. Trains should arrive on time, children should behave, people should love each other and every movie should have a happy ending.

In real life, there is a price for everything and very little happens as we think it should.

As they say in 12-Step programs, "Don't should on me."

In the case of prednisone, we have truly a wonder drug that has, at least in my case, absolutely KO'd BOOP. Did I honestly expect that there would be no side effects for such a miraculous pill?

I'm not saying that we, as patients, aren't entitled to information and guidance. I'm just looking at "both sides, now."

More later.

Appearances, Again

This is the lump on my back.

What you can't see is the corresponding lump on the back of my head.

It amazes me now to think that for the past several years, I have hidden behind others and tried to get out of pictures because I didn't like the way I looked.

And now...(WARNING: Irony Alert!) now, I have posted the most grotesque photos of myself!

IrishGirl emailed to say she can't recognize me.

Surprise! I can't recognize myself.

You know that saying about "eyes being the window to the soul." Well, I look deep into my own eyes in the mirror and I still don't recognize me!

I think I'm going to have a different attitude about my self and my body after this is over, because no matter how I look and feel afterwards, it will be better than I look and feel now....

"Coping with Prednisone"

The local library finally came through and I quickly read Coping with Prednisone.

This book is invaluable and gives a lot of good advice about how to cope.

Diet tips, like no salt, no sugar and recipes are helpful. Those are simple things I can follow through with.

What was also helpful was reading that Eugenia Zuckerman, one of the authors together with her sister, had so many of the side-effects I had, including some I was ignoring, because I just couldn't believe the effect was related.

I'm referring to the eyesight issue. My eyes could suddenly become blurry and then moments later be OK again. Right now, they're OK...today that is.

Finally, the mood swings. Eugenia devotes a lot of time to this and rightly so.

This by far is the most difficult thing for family to deal with. I have little control of what yesterday's NYTimes Science Section article calls, "my imp."

Oh yes! As the Yiddish saying goes....if it's on my lungs (read heart), then it's on my tongue.

How very apt! Stoically, MyMan takes the brunt. In the book, Eugenia Z interviews her former husband to ask how she behaved during the treatment, and he simply said she was "nuts."

'Nuff said.

I did envy the fact that Eugenia was able to continue to work, albeit with tremendous stress.

Also enviable: the support system of shiatsu massage and chiropractic work. Lucky woman!

One result from reading the book: bicycling will be added to the yoga routine and diet will focus on health, not losing weight right now.

Hopefully, there will be time, G-d willing, after I'm better to focus on appearances. A subject for the next post.

Weaning - Week One, Day One

Today is devoted to documenting where I'm at as I begin day one of weaning off the prednisone. This is a photo from today. G-d knows why I'm smiling, but that's actually the best I can do.

Once I had dimples and my mouth opened wide for a smile. Now, my expressions are practically erased. I guess this is what happens with plastic surgery, the movement and vitality in the face are gone. Here, as you can see, I can barely open my mouth.

(That's the bathroom folks! Sorry. That's our most light-filled, widest mirror.)

This is today.

Per doctor's instructions prednisone intake will be reduced by one-sixth or approximately 17% starting today. Instead of 60 mgs, I will now be taking 50 mgs.

This is what it feels like to have taken 60 milligrams a day of prednisone for 6 consecutive weeks.

• My head, neck and back are very swollen.
• Chest has expanded at least 2 inches.
• When speaking, words sometimes become garbled because my cheeks crowd my lips.
• When eating, I sometimes feel like I'm choking, because the position of my neck makes me feel that there's something lodged in my throat.
• When I do yoga, I can only put my head back so far, because the fat pad on my back bumps into the fat pad on the bottom half of my head.
• Also during yoga, I can only curl my chin in so far, because the ring of fat around my neck bumps into the elongated pad of fat under my chin.
• When I read, I sometimes have to reposition my arms with the book, because I don't have the range of sight I had before...the fat pad on my chin gets in the way.
• Putting on deodorant is hard, because I can't bring my opposite arm all the way across.
• My face burns all the time.
• I feel woozy.
• Today it's hard to hold my head up.
• I feel like my head is a balloon.
• My legs are weak and wobbly.
• Climbing stairs are now OK from a breathing standpoint, but my legs feel hollow.

And now for the good news.

• My chest opens more for yoga and all breathing.
• Clearly, the scar from the biopsy is no longer as restrictive as it was.
• Amazingly, the yoga practice actually improves from day to day! (There's nothing like improvement to keep you motivated to keep going!)

Enjoy this 4th of July! I'm celebrating the beginning of freedom from prednisone.

"Clean House," BOOP and Me

When MyKid is at day camp, I often watch "Clean House."

Not often, please, I watch it whenever I can.

The program's format gives me a sense of order.

First, they show you this terrible mess of a house with dirt and piles and boxes of junk everywhere, so that the "team" practically can't get into the house. Then the team does a little therapy with the folks who have let their lives and homes get so out of control.

Then someone from the team confronts one of the hoarders and they have a rather civilized discussion/fight over what the person will have to part with so that they can make money at the big yard sale.

It's so sad to see these people unable to part with busted toys, old purses, grandma's lamps, and the other plethora of their lives.

Then the yard sale takes place and all the junk is dispensed with. And then finally, they do the reveal. That's the best, because you get to see the great furniture and the "clean house" free of piles of junk. Also, you can see the relief on the people's faces. They honestly look relieved and happy, because the burden of the junk has been lifted from their lives.

And every time, Nicey Nash, the producer/leader of the program, says something like, "I know you want us to do your house, too, but we have other houses to do. Good-bye."

Well, I couldn't understand why I kept watching this show. I mean, our house isn't perfect, but we're not hoarders and we're always throwing things out.

So, what's my fascination?

Last night, I finally understood. I want my neat life back.

BOOP prevented me from working properly for 4 months. I couldn't come to meetings, because I was unable to breathe. I had yellow mucus, or I was coughing.

Either I had allergies or bronchitis or pneumonia.

I was practically blamed for closing my department, because I was "never around."

So, I get a rare disease that no one's ever heard of, has a funny name, and the researchers and pulmonologists and scientists who identify it don't even know what causes it.

You leave the hospital with a stack of medicines and a bunch of instructions. You're essentially left on your own for weeks. No one calls in to see how you are doing. Just come back in 4 weeks says the doctor.

Now, to cure it, my face and body are distorted. I can barely move. I'm warned that I'm in danger of getting diabetes and/or osteoporosis.

BUT, little or no guidance is provided to cope with all these changes. Anyone with BOOP has to troll the Internet to figure out what's going on.

My family life is upturned. My child's behavior is affected.

My livelihood and a good part of my identity is stripped from me after months of being tortured by a supervisor who in my opinion is a vindictive, jealous, cruel individual.

And the only way I feel I have any "control" of what's going on in my life is via this blog.

So, I would like to have my life back!

I would like to have my go-to-work-come-home order that has sustained me all my life.

I want my own neat, safe existence back. I want a "clean house."

Last night, as all this became clear to me, I imagined that my life was like a big egg, being cracked in two.

And that maybe my ordered, organized, safe life not only had changed, but really wasn't going back to the way it was before either.

Or maybe it was just a prednisone-induced dream.

The Effect on the Family

MyKid is 10 and has become terribly clingy. He asks me for everything. It's like his independent spirit dried up.

At the same time, if I ask him to do anything, he's pretty compliant...except when he's not.

I wish this was over, and we could go back to the way things were. But, things haven't been the "same" for more than 6 months now.

First I was sick on and off, now for the past 2 months, I've been "recovering." But, it's not recovery to the family. It has meant living with a volatile female who's face is so distorted that even old friends sometimes don't recognize me. It's a wonder to me that both MyMan and MyKid can even look at me.

A Slow and Difficult Week

I had anticipated that this would be a difficult week. I barely left the house this week.

I imagined that after 6 weeks of prednisone at 60 mil a day, I not only was still taking a lot of medicine, but I had also accumulated a lot of medicine within me. I know this sounds vague, but each time I take another prednisone pill, I imagine/feel a prickly swirly feeling throughout my hands, a little like pins-and-needles, as if my body's a lava lamp, but instead of colors, it's weird medicine swirling through me.

The lump on my back is long and deep. My cheeks are so puffed up that the corners of my mouth need lip balm, they've turned red and itchy.

Last week, when I got my hair cut, a clump came out in the hairdresser's comb. I was encouraged to use a strong conditioner and not wash my hair too frequently. The only problem is, that you simply have to shampoo after a night of prednisone-induced sweats.

I can barely walk around. Standing for only a few minutes really is impossible.

But on Sunday, I can finally start cutting back. It's only by 10 mil, but I'm ready!