Hits and Misses

photo © Michael Jastremski for openphoto.net CC:Attribution-ShareAlike

Can there be a more cliched sign of happiness than a butterfly?

But here's the truth: No sooner had I walked out of the house then a delightful little monarch butterfly, not unlike the one in the picture above, flitted out of our weedy garden, crossed my path and alit on my hand for a second before flying away.

It's true! It really raised my spirits...

And now to today's list of hits and misses:

Hit:

My face is deflating, or defatting. Hurray! But, I can tell because....

Miss:

The wrinkles are back!Wouldn't you know it? The first sign that the prednisone is receding is the reappearance of the fine and deep lines making "parentheses" on either side of my nose. Note to Nora Ephron: At least you can hide your neck with your turtleneck sweaters!

Hit:

I finally left the house today after two days of being so tired I couldn't go out. I took a nice long walk but...

Miss:

While I was on my walk, I forgot I had a lunchtime date to go with a friend to a lecture. She came to pick me up. I am so sorry!

And for those who understand and know...Remember the Destruction of the Temple....

One Day Honey, One Day Onion

Yom Asal/Yom Basal

With my apologies for mangling the Arabic language, I was told that this phrase, yom asal yom basal means one day honey, one day onion, which I hope everyone understands means that some days are better than others.

In Arabic, the words honey and onion rhyme.

I am now on week 2, 30 mgs. of prednisone a day and as productive and good as yesterday was, today was the polar opposite..

So, yesterday was honey...

Yesterday, I did yoga, walked to the library and picked up some books. Then to the supermarket for some groceries and stopped in a couple of stores, all in the parameter of a couple of blocks near the house.

...and today was onion.

Today, I woke up at my usual 6:30 a.m., went back to sleep at 8 or so and slept until 10:30. I had a doctor's appointment at noon. MyMan drove me and then I walked back home -- just a few blocks, most of it downhill -- and collapsed on the couch to sleep, again.

I'm trying to make supper now, but it is quite challenging. I have no energy. My back hurts, my arms hurt. My legs can barely keep me standing up. It's an easy, quick meal. Tacos!

Usually -- that is since coming home from the hospital -- I have had enough energy to begin cooking around 5 in the afternoon. This has been a great blessing, and a lot of fun, since for the first time, I have time to do a little planning and experimenting. So, I'm especially disappointed that I'm sort of blotto today.

Prednisone Perspiration

While the night sweats seemed to have abated, I still can suddenly start perspiring profusely. Those two words always seem to come together in English. As I may have mentioned previously, in the past, I never perspired profusely. I barely perspired.

But not since prednisone...

So today, because I really wanted to see what I looked like sweating I carried out what I am embarrassed to say was an act of total self-absorption. I actually stopped to watch myself perspire in the mirror. Also, like I said, it was a slow day.

Some drops ran down my cheek and rounded my engorged chin. Some sweat beads flew off my face. But surely the most bizarre thing that happened was when the liquid ran between my eyebrows, down the bridge of my nose to pool under my eyes in the shelf formed by my engorged cheeks.

If I hadn't leaned over and wiped the liquid away, would I have needed a windshield wiper to see?

Until I blog again, Adios!

Diabetes Watch and Yoga Poses

Diabetes Watch

From the beginning, there have been warnings about the possibility of developing diabetes as a result of taking the prednisone.

Several weeks ago, Dr. A asked that I start monitoring my blood glucose levels. I didn't do it. Well, he didn't ask for results at our last appointment, but asked again that I check myself.

So, now I have a home tester kit and have begun the process.

And this morning, I'm a little high...gotta keep checking.

It's scary, because I'm limiting my fruit/sugar intake...a lot!

On the other hand, I have had much less energy to cook real meals. So, I crave more quick snacks. I have to watch everything.

Yoga Poses

Yoga has become a real pursuit. I take books out of the library, download dvds and rent them, all in an effort to learn new poses so I don't get bored with the routine.

And I've discovered so much interesting information. Great books.

And when I do the poses, I really perspire. I know, like you needed to hear this?

But for me, who once could run around Prospect Park, and practically never break a sweat, this is really quite an experience.

Namaste

The Weaning Regimen

When I visited Dr. A, the pulmonologist, on Wednesday, he wrote out a week-by-week regimen of how much prednisone to take over the next 11 weeks.

Wk Mgs Notes

1 40 take all in morning

2 30

3 25 Below 30 mgs should expect bone pain, weakness, lethargy, depression and anger

4 20

5 15 alt 20 low dose on MWF

6 10 alt 20 low dose on MWF Should start to see weight loss

7 5 alt 20 low dose on MWF

8 20 alt days Days not taking the medicine will probably not be easy

9 15 alt days

10 10 alt days

11 5 alt days

On Friday, MyKid stayed home sick.

And I've been so tired...All I want to do is sleep.

I wanted to post a photo, but frankly, even I'm having a hard time with my looks.

Here's the deal: I put on a bunch of weight, all of it above my waist. My pants fit the same way.

But, my legs are weak.

Last week, running for the phone, I literally tipped over and fell down.

But I got up.

Have a good week!

Mixed Emotions

I just came back from seeing Dr. A., the pulmonologist, and I'm a ball of mixed emotions.

While the long hoped-for schedule was provided that outlines the weaning process, the details regarding my health are really disturbing.

It turns out that thanks to the prednisone I now have iatrogenic Cushings Disease, aka steriod overproduction, which is causing the moon face.

So, while I am trying to be happy about the 2-month weaning off schedule, it's still two more months of looking weird and lumpy.

On the other hand...there really will be an end to all this.

This according to the National Endocrine and Metabolic Diseases Information Service website:

What is Cushing’s syndrome?

Cushing’s syndrome is a hormonal disorder caused by prolonged exposure of the body’s tissues to high levels of the hormone cortisol. Sometimes called hypercortisolism, Cushing’s syndrome is relatively rare and most commonly affects adults aged 20 to 50.

Cushing's opposite is Addison's Disease, which President Kennedy had, which is a steroid deficiency, and I am in danger of experiencing that as well, as part of the weaning experience. It's really unbelievable. From the same website:

Addison's disease is an endocrine or hormonal disorder that occurs in all age groups and afflicts men and women equally. The disease is characterized by weight loss, muscle weakness, fatigue, low blood pressure, and sometimes darkening of the skin in both exposed and nonexposed parts of the body.

Addison's disease occurs when the adrenal glands do not produce enough of the hormone cortisol and, in some cases, the hormone aldosterone. The disease is also called adrenal insufficiency, or hypocortisolism.

Lucky me, I have so much to look forward to...

And at weigh in today, I realized that I had put on considerable weight over the past few weeks. Nearly all of it above my waist (so far).

Happily, Dr. A. indicated that by the end of August, I should start seeing weight loss.

Finally, despite eradicating sweets and most fruits out of my diet, the glucose reading was high. I allow myself one fruit a day, and maybe a no-sugar Weight Watcher's type treat. Dr. A indicated that he wasn't judging me. The high level is also just a bi-produce of Mr. Prednisone. Now, I have to start testing myself regularly, as well.

G-d I wish this was over. I am so tired of being sick.

On the other hand, I'm still here!

Thank you G-d!

Bumping into BOOPers

The other day on the train, we bumped into a neighborhood friend who is a Rabbi. We hadn't seen each other in a while, so I brought her up to date.

When I started to define BOOP, she told me there was no need -- one of her congregants had it.

So I passed along my information and encouraged the congregant to be in touch.

That same morning, I heard from a Friend-of-a-Friend. She too, had had BOOP, in the past and gave me some vital information about what to expect over the next few months.

In July, I heard about another BOOPer, the husband of my dental hygienist's patient.

My pulmonologist says he is treating 3 or 4 patients with it.

I don't know what it is, perhaps our urban environment, but I do seem to be tripping over BOOPers. I'm getting the feeling BOOP is not as "rare" as we think.

I'm collecting a lot of information about how this disease presents and how it is treated.

If you have stories to tell....I'm really interested to hear!

A note about fate.

It turns out the Rabbi had missed the previous train, and thus bumped into MyMan and me. And so she noted, it was, as we say in Hebrew, b'shaert, meant to be, that she miss that train and meet me. She would provide the blog address and contact information to her congregant.

Effect on the Family Part II

I know I try to keep the household on even keel. I try not to have the situation affect us (as if!).

Today, it really became clear that the situation is affecting all of us. This blog has provided some measure of "control" or at least I've felt by describing this experience honestly, I have some control.

But, some days, you cannot hold it together. I cannot keep observing the moment and being in the moment.

In rereading the blog, I hear the different voices I use for each situation: my attempts at sagacity and control, my frustration and anger, my laughing at and pitying myself, and my efforts to laugh at both the important things, as well as the many inconsequential things that others take so seriously.

But some days, children are too demanding, men are clueless, it's hot and I forget to breathe. In fact, I don't remember to breathe until it's all over. So I blow up.

And then, for the first time since I've been sick, I'm weeping. I'm making loud sobbing sounds. I can't make the effort to hide it.

Happily this episode is short. MyKid gives me a hug. MyMan tells me to rest and cool off.

Everything's back to normal in a few minutes.

But, not before I apologize for blowing off steam.

Not before I scare them a little, which is the one thing I've tried to prevent. Because if I'm laughing at the situation, then everything's really ok, isn't it?

Even if your face is round as a fishbowl!

In the end, the boys go off for a fishing expedition (really). And I recoup. I sleep. I read.

And the rest of the day is ok...I guess they don't know which one of me is going to pop up next...

Yet another gift of the prednisone.

Prednisone Blues

I was trying to clear out some old DVDs of photos by downloading them on to our computer, when I came across this one of me in '06 with our dog, Lucy. MyKid took the photo.

I decided Lucy didn't need a nom du blog, like the rest of the family. No need to preserve her canine identity. Can you believe that's me after the photos you've seen since?

On to the Prednisone Diary:

Now on a regimen of 40 mgs a day, the ups and downs are really coming at a furious pace.

Monday, I thought I'd start a plan of yoga in the a.m., and a bike ride in the afternoon. The yoga was fine, but I could barely eke out a 15-minute bike ride, it was just too difficult, even riding on a flat surface.

Tuesday, raising my arm was painful, as was bending it. Climbing the stairs was hard. I was flummoxed. And I was sad. I thought that this might be the perfect day to try Oxycontin.

The doctors give it away like water, I've never abused drugs, and at my age and sick, I felt justified.

And, the pain did go away, I was able to move around, and it didn't make me too dopey. But, I sure can feel the difference between the intensity of 60 mgs of prednisone and moving slow on 40 mgs and an Oxycontin. I napped for about 45 minutes, and I just felt low.

I had been hearing from other women about "how good" they had felt on prednisone. I really didn't get it until now, when I can compare being well on it and being low coming off of it.

Wednesday, today, I woke up feeling better. I skipped yoga. I also skipped the Oxycontin. I had no need. The pains were just not there in that intensity. Instead, MyMan and I worked on a clean up project, a project that still resulted in gobs of sweat.

Sometimes I can sit quitely in a room and have rivulets running down my cheek. Other times, I can be walking around and feel dry and cool. Go figure.

Also, MyMan and I spent several hours on the phone trying to make sure I can go to the doctor....because my COBRA coverage still hasn't kicked in, now more than 45 days after I was let go from my job. We just learned today that the hold up has been caused by my former employer, and MyMan wisely contacted relevant authorities to get them to move.

It's bad enough to be sick, it's bad enough to be sick and "terminated" from your job, but to have to fight the very organization that terminated you for the very services that are due you, and that you've paid for....it's really unbelievable. There are no words.

After mid-day, "pumpkin head" did manage to walk to the library and back with a short stop at the supermarket. I overdid it, I know. On the other hand, it was good to get out.

MyMan and MyKid are about to attend this evening's Philharmonic Concert in the Park. Usually, I have to drag them, but all the friends are going, so they're going too. I just couldn't make the walk.

A little culcha is always a good thing.

Can you believe, yesterday was 40 years since Americans landed on the moon?

Litmus Test

There are 17 steps between the dining/living room floor in our house and the bathroom and bedrooms upstairs.

When I had BOOP, I couldn't make it up the flight of stairs without stopping midway, because my lungs needed to take in more air.

When I had BOOP and I was on prednisone, I had trouble getting up the stairs. I don't know why.

Now, I am coming off the prednisone, and I have trouble going up the stairs because my legs are so weak. Today I rode my bike, but it was arduous, even for 15 minutes. How different from a few weeks ago when I rode everywhere on Fire Island.

Embrace My Inner Freak?

"How could any woman let herself go like that?"

"Ugh, how repulsive."

"What's that nice looking man doing with that round freak?"

I'm convinced I can hear people's thoughts as they pass me by. And I'm convinced this is what they're saying. Even expressing this makes me know I'm losing it.

But it feels good to get it out.

So, I'm considering embracing my appearance, stop wearing hats, and just get on with it.

So what if my face and chin is so round that my bike helmet didn't fit. I just extended the strap!

BTW, it is Day 2 of the new regimen of 40 mgs of prednisone daily.

Before We Light Candles

I can't go into Friday night without telling you how wonderful it is to have the love, affection and support of MyMan and MyKid, during this period.

Just came back from a short trip to the corner with MyKid, who loves me the same, holds my hand and talks to me, as if I look exactly as I did before the prednisone. I am impatient with him sometimes and lose my temper.

But out on the street, we hold hands and he whispers in my ear. And my heart is filled with love. No matter how I look, MyMan and MyKid still love me.

I'm lucky and blessed.

On the physical front, I find that sitting and writing is fine, but any physical exertion, like steps or sweeping the floor bring hard breathing and a downpour of perspiration. Oddly, the same yoga routine that I have been doing for weeks, seems to be less strenuous and I feel ready for the "intermediate level." Maybe next week.

On Sunday, down to 40 mgs. I can't wait.

Have a wonderful Shabbat.

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!