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.