My Conversation with Dr. Gary Epler

Several weeks ago, I tried to reach Dr. Gary Epler, the reseacher who identified BOOP back in 1985, via email. I never got a response.

Over the ensuing weeks, I have become increasing irritated by the lack of support services for patients dealing with BOOP. For example, it was only by asking and trying out different therapies...and a little bit of trial and error, like the carrots, that I was able to keep my sanity and focus my energies during this treatment period.

Today, I called his office directly, leaving a message saying I had been responding well to therapy, but I had some questions. He called back about a half hour later.

After thanking him, I explained my dilemma. He directed me to the epler.com website and the Forum link to read more about how others were dealing with BOOP.

I specifically asked about dealing with prednisone. Dr. Epler made two crucial suggestions:

1. Pulmonary rehab is needed for a 10-week period, three times a week. This needs to be arranged via a prescription from my doctor, via my health care system.
2. A low saturated fat, low sugar diet with lots of vegetables and chicken.

Since I didn't agree with the low-sat fat suggestion, but I didn't waste Dr. Epler's valuable time with a discussion on this. I was just grateful that he found the time to speak with me. Thank you Dr. Epler.

Finally, the Forum page on Dr. Epler's website is a great find. There are many people suffering out there, and we need to connect.

From my stand point, I will set up a list of relevant posts so that readers of Dr. Epler's Forum can also refer to my experience.

An Old Story

Late in the winter, as I was getting sick, I decided to begin reading Psalms everyday on my way to work. For a few minutes, I could learn, study and elevate myself before the real work of the day began.

I felt this was a great way to acquaint myself with a body of knowledge I had never studied, brush up my Hebrew and raise up my spirits from what I felt was a work atmosphere characterized by poverty of leadership, jealousy, destructive gossip, backstabbing, etc. etc. ITall order, hmm?

Looking back, I realize I was expecting some pay off, once I completed my self-assigned assignment.

But, I had forgotten the story of IrishGirl.

Many years ago in Jerusalem, after I had left, one of my closest friends, IrishGirl, became very observant of Jewish religion and custom, a status called in Hebrew, hozer b'tshuva.

Like all of us, IrishGirl wanted to marry. To make her dreams come true, she was advised by a religious individual to pray a certain psalm or religious passage for a month. So IrishGirl prayed.

She also did a daily check of her skin, a long-held practice. But at the end of her 30 days, she had not met anyone new.

Instead, she found a lump on her breast. A lumpectomy was performed followed by chemo. She lost her hair, was cancer free and at 36, infertile, unmarried, and still alone.

IrishGirl went on to many more exciting adventures and now runs a successful daycare center outside London, a long-held dream realized.

So today's hackneyed lesson children is:

Focus on the journey, not the desired results.

All Kinds of Insomnia

The prednisone continues to disrupt life. While not waking up at night to gorge myself, I realize I have been operating on less than optimum sleep.

I usually don't fall asleep until nearly 1 a.m., and then I'm up at 5 or 5:30 a.m. I feel refreshed, and happy sleep wasn't disturbed, but 4 1/2 - 5 hours sleep just ain't enough.

Good News!

Just back from the doctor.

The CT scan report was great. To quote:

The prior dense focus of peribronchial consolidation in the left lower lobe is no longer seen. There is some linear atelectasis noted adjacent the suture line. In addition, the consolidative opacities in the right middle and right lower lobe have almost completely resolved. The upper lobe nodules are no longer seen.

Honestly, I don't know exactly what it means, but I know it's good.

Under Impression, Paul O'Sullivan, M.D. says:

....If there is a history of BOOP, the findings are compatible with an excellent response to ongoing therapy...."

Seriously, what more could you want?

So the treatment works and is working. Real cause for celebration.

Now there is the prednisone to deal with.

Also, more good news. I was encouraged to continue with the yoga! The reason I became so tired after the postures, according to Dr. A. was not because of the breathing....but because of the effect of the prednisone on the connective tissue. At least that's what I understood from our quick consultation.

So, there really is good news this Shabbat... Just two months after starting treatment.

Regards to all...

Lance and Me - Irony VII

A few days away. Even sick and out-of-work people get to take a few days off.

The mother of one of MyKid's classmates invited us to Fire Island. The weather was grey and overcast, but the companionship was wonderful. The children got along and were active.

I was able to rest and MyKid could be busy, outdoors and exercise some independence. It was a beautiful gift. Thank You MsL.

During the week, bikes are allowed. Walking was difficult. Standing for more than 2-3 minutes very hard.

I was suggested to try to ride a bike. And I did. And it was good. As long as the ground was flat. Our host said, I was like Lance Armstrong. He couldn't run, but he could ride.

I've never been compared to Lance Armstrong before. But, I was so thrilled. So invigorated.

So, here's Irony VII: Yoga as wonderful as it was, wore me out, but bike riding left me winded but capable to carry on during the day.

One last note: MyKid's latest name for me: A Blown Up Grown Up.

Ironies II Through VI

i⋅ro⋅ny

1  [ahy-ruh-nee, ahy-er-] Show IPA

–noun, plural -nies.

1.the use of words to convey a meaning that is the opposite of its literal meaning: the irony of her reply, “How nice!” when I said I had to work all weekend.

2.Literature.

a.a technique of indicating, as through character or plot development, an intention or attitude opposite to that which is actually or ostensibly stated.

b.(esp. in contemporary writing) a manner of organizing a work so as to give full expression to contradictory or complementary impulses, attitudes, etc., esp. as a means of indicating detachment from a subject, theme, or emotion.

3. Socratic irony.

4. dramatic irony.

5.an outcome of events contrary to what was, or might have been, expected.

6.the incongruity of this.

7.an objectively sardonic style of speech or writing.

8.an objectively or humorously sardonic utterance, disposition, quality, etc.

Origin:
1495–1505; < class="ital-inline" style="font-family: Verdana, Arial, display: inline; font-style: italic; ">eirōneía dissimulation, sarcasm, understatement, equiv. to eírōn a dissembler + -eia -y ³

Ok. Thank you Dictionary.com.

I just wanted to make sure I was using the right word. Not sarcasm, not sardonic, not satire. Irony.

I guess what I'm talking about is item #5. As in:

Everyone keeps coming up with the ironies of this illness.

And they run the gamut from the sublime, for example,

MyKid remarked suddenly the other day, "You know Mom, even if you have a terrible disease, at least it has a funny name, BOOP!"

to the ridiculous,

The Workman's Comp issue: While Dr.A justifiably admits that there's nothing in the clinical results to support the fact that acquiring BOOP was related to my workplace, why was it that the hardest coughing, the worst mucus, and the general sickness always really started up in the work place? How could we spend a week in Charleston in April, with the flowers in bloom, and I hardly coughed? And why could I walk to work in the blistering cold and feel good and then hit the entrance to my office space and start coughing?

The need to work and write, when you don't really have to:

Freed from the daily grind, I'm still writing, practically everyday on this blog.

And as GraciousRelative pointed out,

As thousands, probably millions of people are becoming redundant (as they used to say in England) due to the Internet, I am, no doubt like many others, finding a new way to outreach to people, for free....on the Internet.

And, to counter balance the steroids pumping through my body and to stop the inflammation that swells my flesh,instead of turning to soy, vegetables and rice -- the magic foods du jour -- I'm turning to my grandmother's practices and the grandmothers of women around the world: whole milk, bone soups, gelatins, meats, and the fats "they" tell you not to eat: chicken fat, coconut oil.

And, even Yoga, which gives me so much spiritual uplift, and a sense of accomplishment, right now,

I cannot practice it, because it tires me out entirely too much.

Something I know was helping my breath, was also wearing me out.

Oh, where will it end?

(That was me being overly dramatic, not ironical.)

Dr. Epler Where Are You?

Dr. Gary Epler in Boston identified and named BOOP back in 1985. He created an interactive website, that doesn't seem quite so interactive these days.

It features "BOOPTOWN" which was meant to be interactive, but doesn't seem to work when you click. There's good basic information and links from this blog to that website can be found in earlier posts.

There's also a web page for a non-profit he heads related to BOOP, COPD and other specific lung diseases. The last Annual Report is from 2005, which makes me wonder about the status of the non-profit and current efforts to disseminate information about BOOP.

I have one main question. I reviewed what the non-profit was interested in supporting. What I did not see was anything related to "support services," for those suffering with BOOP.

In my BOOP experience, thus far, I was essentially sent home with a bunch of pills. That's it. A little verbal description of what to expect from the prednisone.

What's missing in the treatment protocols is the kind of social-services support one might expect for diabetes or cancer patients, i.e.,

• clear, diet suggestions to help support health during the treatment (maybe they haven't studied that yet, but it would be helpful),
• psychological support services for how to cope when "'roid rage" hits, say a phone number to call, and
• possibly setting up a link to a network of other BOOP sufferers who could provide support.

I'm sure there are other great ideas that would be valuable to the patient. As a grants writer, I'd be willing to work on that.

With an estimated 25,000 annual sufferers nationwide, this could be a great support system, a wonderful way to track BOOP for the doctors

So far, an outreach email has gone unanswered, and my next plan is to call directly.

If anyone knows what's happening with Dr. Epler, please let me know.

If anyone has more ideas for the BOOP Complementary Support System Project (I guess I just named it), please let me know.

Intensification

BOOP, Betty Boop and ME

There is no doubt that the effects of the prednisone have become more intense.

My legs hurt and are wobbly. I can barely walk a block. And I sleep more. I drift.

Today, at Father's Day festivities, MyDSD was shocked to see my appearance.

In the street, people avert their eyes.

Early on in this blog, I warned anyone looking for Betty Boop, to look elsewhere.

But the prednisone has changed all that.

And while, my chunky, sagging, engorged cheeks could be just a tad reminiscent of that classically cute babe, my

appearance is still pretty foreboding, as these recent photos can attest. Note the chin under the chin and the pad of flesh below that.

Note the pads on the pads under the eyes.

On the other hand, sometimes as I look into the mirror, unable to tear myself away from the disfigured face, I think perhaps I look like a chipmunk:

And MyKid's contribution to the mix is that he has likened me to a guppy:

And since there's nothing like an interactive website....why don't you pick your fave and vote. Which one do you think I look most like?

Betty?

Chipmunk?

Guppy?

Ironies I

There's a tree in our front yard. It's an annoying tree. Our British neighbor calls it a yew, but we call it an evergreen. We tell the cab drivers to stop there, by the tree, because ours is the only house with a large, Christmasy tree in our little front yard.

How old is the tree? We don't know. A 1940/WPA project photo of our house doesn't show the tree. But, back in the mid '80s when I first moved into the area, the tree was here.

About 10 years ago, we had an arborist shape the tree and neighbors stopped by to say what a nice job, etc. Let's just say, it's a beloved, neighborhood tree.

The irony is: I really hate the tree. The roots are so deep that we can't really plant anything else in the little plot of land we have. Also, the yew/evergreen drops tiny green spikes that make the soil acidic and nearly everything dies that we plant there. The shade from the tree further limits the possible plantings, etc., etc.

Some hydrangea took root, but this year, they only developed leaves, save for one lovely flower.

Finally, and this really is an irony, we're one of a few families on the block that don't celebrate Christmas, and we're the guys with the Christmas tree.

So, now, the darn thing is dying. The top has gone brown and the branches look pokey.

Why and why now? Could it be because the tree's roots have gone as far as they can go? Could it be that the losses that seem to be filling our house -- loss of job, health, business -- have seeped out of the house and are attacking our tree? Does the sense of loss extend to our tree? Does the tree "feel?"

Or, could it just be too much rain?

I don't know, but this being Park Slope, I'm already composing the sign I'll have to post outside, explaining that "we didn't kill the tree, the tree died its own natural death." Because you know, this is Park Slope and we're bound to get some flack for changing anything. Even if it was nature and not "us."

I Should Have Been Blogging

As I am in the last two weeks of taking prednisone before being weaned off, I imagine I'm at peak levels of steroid retention and intake. (Hey it's my blog, it's my imagination.)

The effects are becoming more pronounced. My arms and legs hurt. My face, swollen to the size of a Halloween pumpkin, burns. Sometimes it's difficult finding a comfortable way to sit and read, because of the steroid fat pad on my back and the ring of jello around my neck. I sometimes feel like I'm choking. The swelling is around my chest, I feel listless and unable to do much for most of the day.

Last night was the first full night of sleep I've had in several days.

What's worse though are the psychological effects. In an effort to apply a less as more principle, let me ask you to imagine what happens when you

• Take a sick, steroid-filled, out-of-work post-menopausal female.
• Add to this a rambunctious, curious soon-to-be-fifth grader just out of school who plays child-oriented TV at full blast.
• Top it off with a self-employed real-estate industry executive.
• Now, shake them up together in a relatively small Brooklyn house for a few days
• Add incessant rain, no play dates in sight, one computer, one TV..

It has been tense, to say the least.

Yesterday, too, I had a wonderful guided, conversation with a Relative-of-a-Relative on turning this blog into something more lucrative. This gracious, generous magazine exec asked, among other things, what had made me start blogging.

The short answer: It's keeping me sane.

This way I keep writing. I keep talking. I keep updating friends on what's happening. When it comes to a simple question like "How are you doing?" it's hard for me to just say, "Fine."

The blog allows me to put it all together in a lucid way, I hope. I guess I'm imposing some order on a life gone out of control (as life will do). And so, the title of today's post..

I should have been blogging...

This opened a whole new subject...GraciousRelative pointed out the irony of vast numbers of individuals now out of work, in great part due to the shift to Internet use, who themselves use the Internet as a (free) outlet to blog/complain/comment...More on these and other ironies later.

Mysterious Changes

Something is shifting inside of me....

I'm eating less, but putting on weight. I have had fewer nocturnal awakenings and thus am eating less food in the middle of the night. We haven't been eating that much meat and I haven't had soup in several days. My portions are smaller and I feel my capacity is smaller, yet my waistline has increased by nearly 3 inches. My stomach feels distended, but clothes still fit so far.

I'm weaker. Even with reducing the yoga to the most elementary, gentle poses, I'm knocked out for much of the morning.

Standing even for a short while results in strange feelings in my legs. Walking is still ok.

Sugar. I was told to be careful, that diabetes was one possible result of the prednisone. For days, I have tried to make cold teas with just small amounts of sugar, just enough to sweeten and not too much.

Everything I made with even small amounts of sugar was leaving a sticky taste in my mouth or the back of my teeth.

There is cake always out in the kitchen for MyMan's evening snacks. The visual cue is too much for me. And let's not forget the catastrophe of the carrots!

It all had to be related to the diabetes warning. One message my body was sending was coming through abundantly clear...lay off the sweets!

Seltzer gave me the hiccups. And green tea w/no sweetener at all also seemed to leave an unpleasant taste and feeling in my mouth.

So, it's pure water for me and no sugar. MyMom made same beautiful lo-sweet, sweetened w/Splenda cookies. That's it for snacks, or apples or bananas. Sugar is out.

According to my calendar, I am in week 3 of the 6 weeks of prednisone, before they wean me off. What was doable last week, suddenly is not this week.

What's going to happen next?

Please tune in again folks to find out the latest...

Yoga & Prednisone

Yoga. It seems to be everywhere you turn. Everyone's doing it. Everyone's singing its praises. Even one of MyBestBuds says it would be easier to get the pantyhose up in the morning, if we only did yoga.

With the economy down, we dropped the Y membership we've had for years, so going to a nearby class was not a viable possibility. I had bought a "Yoga for Dummies" CD several years ago. Now, truly was the time, in every sense -- health, financial, spiritual -- to put to use my best intentions. I dug out the disc and began.

I dutifully sat down and was immediately struck by the emphasis on breathing. I'd forgotten about that. I was coming to this in the hopes of keeping my bones in tact during the prednisone onslaught. I wanted to feel that I was at least doing some physical activity that would counteract the negative effects of all the debilitating medicine.

And here was Sara Ivanhoe, the instructor, telling me to focus on breathing, and breathing out to "clear my lungs."

So my deep down reaction was, "OMG -- I thought she was talking just to me."

Of course, I knew about yoga's emphasis on breathing, but I was having one of those "I've found this again" moments. I'm home.

You do have to laugh, when you can't do some of the poses in a way you know you should, because of the prednisone pad you've grown on the back of your neck, or the prednisone flesh that thickly rings your neck.

And, I did try to find it funny, as Sara suggests, that I couldn't do the tree pose, because I can't stand on one leg.

The first two times I completed the 12 poses of the beginner's routine. As Sara drew her hands together to end the session and wish the audience "Namaste," tears welled up.

Relief? Finding something so appropriate? Just physical release? Who really knows why we cry? I have always had trouble understanding it.

Note: While I would like to end this posting on this gloriously emotional upbeat note, I need to just bring this report down to earth a notch.

While I have happily gone through the beginner's routine, I confess I found it too strenuous. At first I was full of energy, my mind clear and active. But, I would be pretty shvach* for the rest of the day.

It's clearly an indication of my condition, that even these gentle routines can be too much. Currently, with some fine-tuning from a Friend, I am learning to modify the routine...more to come.

*worn out

April 2009

In real time, this blog has turned into "My Bout with Prednisone" and I wanted to finish documenting how BOOP presented with me.

Nothing could be more strange than April. In the last week of March, I had pneumonia and stayed home for several days. By the beginning of April, I actually felt better. My voice was still gravelly.

We had been invited to Charleston for Passover. To make all the connections, we ended up staying for practically the entire holiday, April 8-14th. Charleston is/was beautiful. Flowers were in bloom, the air was clean. We walked everywhere. I had a little something in my throat, but I was fine. No mucus, no hacking. It was a relief. I thought the worst was over.

A good word for our innkeeper at the Broad Street Inn - http://www.charlestonkosherbedandbreakfast.com/ -- Because like the formerly-bald guy who's president of the hair company -- the innkeeper's not just the innkeeper, she's also MyMan's Ex and my step-daughter's mom. So the whole family was there.

Gracious does not nearly begin to describe MyMan's Ex. We really relaxed and enjoyed. Thank you!

We returned home and to work. I worked feverishly, now under the strain of a "professional improvement plan," with it's threatened termination date of May 29th.

Context: This is the week when Swine Flu really hit the news. The city was in an uproar, the hospitals were filling with the frightened.

On or about April 26th, the tree in the backyard finally began to bloom in green leaves and white flowers. We don't know what kind of a tree it is, we only know it grows a c r o s s our little backyard and not up like a proper tree.

So, I began to cough. Not too bad, but I was coughing. Tuesday morning I had a long-standing appointment for a CT scan that Dr. A., the pulmonologist had asked for.

But, with my coughing becoming out of control again, I raced to the allergist at lunchtime. This was the day that both of my work colleagues, on both sides of my room, came in to see how I was, I was coughing and gagging so hard.

Surely, please G-d, this was an allergic reaction to the trees. The allergist agreed, but after a check up, he detected bronchitis. He sounded surprised, because the coughing seemed to coincide with what was happening outside, everywhere, not just with our cross-wise tree. I was given nebutol and a prescription antibiotic. I began taking it immediately.

Wednesday night, I woke with searing pain in my back. I was coughing again. I could barely speak. Thursday I had to stay home from work again.

My voice was gone, I was full of mucus again. That night I called Dr.A., twice. He did not return my phone calls.

I was too sick to be angry. I knew I didn't present as an hysterical New Yorker. Even if Swine Flu was all over the news, he knew and I knew I'd been sick since January for heaven's sake.

I gave up and went to Dr.B. on Friday. He checked me and pounded my back again.

He declared it pneumonia. He said he needed a chest x-ray. I remembered that on Tuesday, I'd had the CT scan. He ordered it up from the clinic. The report indicated of BOOP, so Dr. B. sent me back to Dr. A.

Dr. B. felt this was rare. He'd seen only a few cases in 30 years of practice.

I didn't want to go. I was tired, I was beat. I'd had enough bouncing from doctor to doctor. I lay on the couch. We called the pulmonologist, Dr. A. His office hadn't yet received my CT scan.

But, MyMan called Dr. A. It was apparently an unforgettable call. He went outside to do it, so I wouldn't hear it.

In retrospect, Dr. A. said, he knew it was BOOP after the phone call from MyMan. In another conversation, he also said BOOP was a failure of the pneumonia protocols. Dr. A. is thorough and decisive and I'm glad he's my doctor. In my opinion, it shouldn't have been MyMan's cri de coeur that settled the diagnosis. But, I'm glad MyMan did it.

That night, as I've reported before, I was in the hospital.

Within a week, I'd gone from allergic reaction to bronchitis to pneumonia to BOOP.

Shabbat Shalom

The Carrot Coda

A week after I got home from the hospital, MyBro visited.

MyBro has a heart the size of Texas. I deeply respect the benefits he has garnered from his spiritual community.

A lifetime of grappling with weight and food issues is nothing to sneeze at. And so, on Friday, MyBro hauled up his mighty juicer and decided to set my body aright. It had helped cleanse his own body. He had seen the good effects on a friend who was grappling with cancer. What could be bad about fresh juice?

First, he offered a beautiful apple juice, straight from the apples to the juicer to me. It was great. I sipped it slowly and savored it.

Later in the day, he took about a pound of organic carrots and juiced them. Again, I did not slurp this down like a Slurpee. This was a religious experience. I was going to get well through the finest and purest of ingredients.

Ladies and Gents, I broke out into hives.

My eyes itched and watered, my hands turned red and itched. My face itched. This went on for about 20 minutes.

I took one look at myself in the mirror and panicked.

I was having an allergic reaction to organic carrots for G-d's sake!

Who ever heard of an allergic reaction to organic carrots?

Is there anything more pure in this universe than an organic carrot?

My lips began to swell up. And prickle.

I went berserk. I called 911.

I was not going to expire from a gosh darn pound of organic carrots.

Within minutes the fire dept. came (latest protocols for NYC).

When I told them what I ate, they had to ask it:

Have you ever eaten carrots before?

Hmm How to answer this question?

Sarcasm? No, No, I'm 58 years old and I've never eaten a carrot before.

Straight answer: Yes.

Reference Chuck Jones: Eh? What's up Doc?

In no mood, I opt for the straight answer.

When I tell them the list of meds I'm taking at this point, they say I was taking good stuff to counter-act the effects of an allergic reaction.

Within minutes, the EMT guys come and we go through the whole routine again.

Have you ever eaten carrots before? Have you ever had carrot juice before?

I wish that I just looked at the guy. But, I answered nicely. He was there to help after all.

They give me Bendadryl intravenously, a little oxygen and I'm off to the ER again.

I'm released a couple of hours later.

Clearly, whatever I'm taking for medication, whatever disease I have, it isn't letting my body behave in any way you might expect.

So, for me, the counterbalance is a diet that is counter-intuitive, cause my body is working counter-intuitive.

My body just rejected organic carrots.

Go figure.

BTW, MyBro was so upset. It wasn't his fault. I love him for ever. It was a mistake, and we all learned from it.

Documentation

One of the reasons I started this blog was to document everything that has happened, really since December '08, when the first signs of the disease appeared.

In this installment I want to discuss the hospitalization.

Friday, April 29

As I've reported earlier, Dr. A. decided on hospitalization in order to facilitate the biopsy and to ensure I was receiving enough oxygen.

With no beds available, Dr. A. called an ambulance to admit me to the ER. This would ensure speedy admittance & hospital bed. Or so we thought.

You need to understand that Dr. A's office is a total of one-half city block from the ER, and thinking it would take a few minutes for the ambulance to arrive, I stepped into Barnes & Noble, next door, to get one last glorious decaf iced coffee. I figured I had a wait ahead of me.

But no, as I returned to Dr. A's office, the EMT guys were pulling up. Dr. A's office completed the paperwork and I was driven the half block to the ER.

MyMan showed up shortly thereafter, brought my stuff and stayed with me for several hours. I was finally admitted at around 4:30 a.m. that night, a full 10 hours after my arrival.

Once a bed opened up, oxygen was provided, and I was instructed about how to inhale what I now know was albuterol to keep my airways open. I still don't understand why no assistance was provided until I was actually admitted.

I felt no relief, fear nor expectation. No worry either. I gave it up and observed myself and what was happening around me. I knew MyKid was cared for and safe.

My state of mind was: I was just here in the hospital, dealing, following instructions. Auto-pilot.

Saturday April 30

Saturday was a blur of friends, family and synagogue community members coming to visit me. I felt so lucky, so buoyed by the good wishes and attention.

Flowers from my DSD (darling step daughter) were especially beautiful. My DSIL (my darling son in law) sent over crosswords. I love them so much!

But my idyll came to an abrupt end when the evening nurse let me know I was to be moved: A CT scan taken a few hours before looked "suspiciously like tuberculosis."

THEY HAD TO BE KIDDING. One silly misdiagnosis by an under trained tech (my impression) and my path to health was being detoured! I was whisked off to my own private isolation room.

It was nice to have one's own room & private bathroom. Thus began a parade of doctors, nurses and aides coming in for tests and questions, and all looking like robbers -- they all had to wear thick pink masks, ostensibly to protect themselves from my "tuberculosis."

Context: You need to remember that this is taking place as swine flu hysteria is racing through our area. It's on the news every night, and at every entrance to this hospital there's a metal rack offering those entering the same blue-tinted face masks you saw on TV every night.

To test for TB, I needed to cough and spit into a cup for 3 days, to see if there was blood in my mucus. There was no blood in my mucus. Saturday night was Day 1.

Sunday

More oxygen, more albuterol, pills. TV on. I was on lock-down. No leaving my room. Knitting a little, maybe. Reading magazines, newspapers. Attempting crosswords.

More spitting in cup. Day 2.

Probably this day there was a visit from Infectious Disease Dr. who was good enough to declare I didn't have TB and even took off his mask. Thank you Dr.! But, the results still needed to be in.

Most annoying of all is the dumb repeated questions routine. I mean, I answered the questions, the answers are in the book. Do the doctors even bother to read the reports they're handed?

• Have you ever smoked?
• Yes
• When and how much?
• Stopped 20 years ago; 1 pack a day
• Oh

Oh, as in, "darn and I thought I figured this one out, Oh." Over and over again. And thus ends each of the doctors' brilliant attempts to "solve" my mystery disease. Yuck!

Monday

Same as above, minus IDD. Dr. A. stopped by. Of course he knew I didn't have TB. Today's cup of mucus would have been Day 3, but apparently it got lost, we learned later. I was afraid that the results of the TB tests might hold up the biopsy. Apparently not:

Biopsy was finally scheduled for Tuesday. I welcomed the idea of the operation. It meant one step closer to going home.

MyMan came today, and every day, bringing cheer and news of the outside world. I miss MyKid like crazy. I wonder how he's taking the fact that Mom's in hospital. In his stride, G-d bless him, in his stride.

Tuesday

Biopsy day. Finally, another step closer to getting out of here and resolving what it is I have.

I hated the prep. I hated the idea of them going in to cut me up, for the sole purpose, it seemed to me, of confirming what the CT scan already told them. How much proof do they need?

I remember listening to the sexist comments of one of the male doctors?aides?nurses?, who cheerfully flirted with the nurses while I lay there, like a piece of meat. Do they think we can't hear?

I had a moment of panic as they placed the mask over my face. I remembered going under for my first operation in 1953 on my eye. The black mask with the funny-smelling stuff.

I came out of the biopsy with a tube hanging out of me, which felt about 4" wide in diameter. It wasn't of course. But it felt like it.

Here's the beauty part: they gave me a little trigger gun. If I felt pain, I hit it. It was morphine. My G-d, morphine. That's what WWI survivors were given for pain. The oldest and the best, I guess. I don't do recreational drugs, but they were practically begging me to use it.

It was truly a lost 24 hours. All I knew was I would awake, feel pain, zap that little trigger and go back to sleep. A couple of hours later, do it all over again. I can't say I had a high from this, but I also had no pain.

Wednesday-Thursday

Waiting for the biopsy results. Oxygen and albuterol, nexxium and more pills. TV and magazines. Lock-down ended. Surprise, I didn't have TB. What a shock! But at some point there was no reason to move me, and they kept me in my "private" room.

Both Rabbi and Rebbitzin came each at different times to see me. Now that's a belief system in action. They actually show up, they offer solace. They are gracious and generous. I am heartened.

MyKid came one day. I was soooo happy to see him. I felt so bad for him. What emotions surely he felt...but he's a boy. It's all inside.

Friday

D-Day. I get to go home. But not before a phalanx of doctors arrive to deliver the final report.

MyMan came today as usual, and at my request, brought MyMom. MyMom is 84 and her chief occupation is worry (see worry "telegram" in earlier posting). I figured it was time she got to see what was happening. So she was there for the main event.

Dr.A called to confirm it was indeed boop, but he before he would let me go home, he asked the head of pulmonology (HOP) to stop by, review the biopsy results and deliver the final decision. Dr. A. really did not want to let me go home, but it was Friday. I was anxious to be at home for the Sabbath.

The Visit from HOP

MyMom worked in a hospital back in the 60s and, while many, many things have changed, the visit from the head of pulmonology proved that some things had not. MyMom had been the medical secretary for a hospital department, reporting to the department head. My impression was of the lead role the dept. head had and the swirl of respect/fear that he inspired in his staff.

After being told over several hours that HOP was on his way, had been held up, would be here shortly, etc., etc., by a somewhat disheveled, disorganized doctor, HOP finally appeared. With his pool-like, deep brown eyes, perfect tie under his crisp, white lab coat, HOP towered over his subordinates and floated into my room. (Aside: Of course he was TALL! TALL PEOPLE INVARIABLY RISE TO THE TOP!! THEY TOWER OVER EVERYONE)

In essence, he said, it is BOOP. We don't know what causes it, but we know how to cure it.

He at least had original questions.

When did the problem commence?

December 29th.

Did something happen, say 2 weeks previously? Had I had an abscess or other inflammation in the mouth?

We know, he said, that these problems sometimes are caused by an infection in another part of the body.

MyMom, being MyMom, decided to answer a question. I cut her off. Hey, MyMom, this is my disease!

Finally, Dr. A. relented. I was free to go home. But, oh the instructions to follow.

Friday night, MyMan went to the pharmacy and returned with a bag of medicine, and thus it began.

More Appearances

Yesterday, a school event. It was so good to be recognized by everyone. While I know I don't look like myself, at least there was a matter of elimination. If I was with MyMan, then I I guess folks realized, I had to be Myself.

I haven't really been among people in more than a month, and among those who knew I was sick, it was good to hear that it was "good to see me out and about." It means a lot to be missed.

Appearances

The prednisone has so altered my face.

My first appearance at synagogue in more than a month really was an experience. People I've known for years did not recognize me.

They were staring to figure out who it was, or more likely, they couldn't divert their eyes from the chipmunk-lady.

Above, what I looked like on Mother's Day. Sorry, it's a bit blurry.

To the right, what I look like today.

And just for more details, here's the tell tale prednisone hump. It's a bump.

For more examples of the effects of prednisone, check out this website -- but it's not for the squeamish: http://vasculitis.med.jhu.edu/treatments/prednisone.html

Adios for now...

http://www.wordconstructions.com/articles/health/boop.html

This is a great "plain talk" explanation of BOOP. I encourage you to check it out.

It is Erev Shabbat. My mind is focusing in on sabbath preparations.

Still to come, reports on April and May, details of the hospital stay and a work-related round up.

About My Job, A Teaser:

It would have been enough, as we say, to have to deal with a mystery illness for months, but there's been work to deal with.

And now there is not.

Last week, "they" closed my department, and I was now no longer a worker, but among the great unemployed.

For now, let me just say, it was more complicated than that and there are a lot of unresolved feelings...

Details in coming posts.

So Shin Shin (Shabbat Shalom) and rest.

Hunger

Short post today.

Woke with intense hunger. Once I ate, I was sated.

Then I experienced a complete depletion of energy. Lacking strength. After completing simple daily ablutions, I needed to lie down and rest.

Would reconfiguring how I take the prednisone help?

Suggestions? Ideas?

Making Pit'cha - Calf's Feet Jelly

Pit'cha, or "sulze," is calf's feet jelly. CK was encouraging eating gelatine products. Most commercial gelatine is not kosher. But old style gelatin is calf's feet jelly. On the internet I found a few recipes, but they were for sweet calf's feet jelly, made with flavorings like cinnamon. There wasn't much in the way of context. I remembered my uncle serving it to a relative in his deli on the lower east side, back in the '60s (Mark's on Grand St.).

Mom found a great recipe in Jewish Cookery by Leah H. Leonard. By "great," I mean it was simple. All you had to do was simmer it, skim it, simmer and skim again for a total of about 4 hours. Unfortunately, I only rallied energy-wise after MyMan and MyKid were home. The house was rapidly flooded with the dull, meaty odor. Surprise! MyKid who is 10 loudly expressed disgust over the odor. Can I blame him?

As mentioned MyMan was silent. He understands or at least respects the mysterious ways of women.

The exhaust was implemented, the door to the backyard & fresh air was flung open and simmering continued. MyKid forgot the smell once confronted with the mysteries of math homework. I also set a chicken soup up to boil, and in a burst of culinary experimentation, 2 pizzas (with store-bought dough) were put in a 500 degree oven. I thought my oven was going to burst into flames from all the activity. MyKid also helped by grating the cheese (gotta give him his props!)

Simmering ended after MyKid was in bed and MyMan repaired to well-deserved slumberland. By 9:30, it was time to remove the 3 little feet from the oniony, peppery water and cut away the softened gristle.

I recently read some materials from Hazon(see Hazon.org) and was touched by descriptions of butchering meat that "honored the animal." The phrase came back to me as I gently cut away the now-softened gristle and cut it into dice, per the recipe. If we are going to slaughter little calves, let us not waste anything. Let us use everything. Let their sacrifice be totally used. No waste, no killing just for a part, but for all of the animal. Maybe it's the heightened state from the prednisone, but I also felt in touch with my ancestors, who wasted nothing, ate well, and lived long.

(In truth, if I may wander off topic for a moment, I am sitting at the computer that rests on an Empire-style oval wood table that my grandfather rescued from the trash and put on wheels, probably during the 1930s, so we may be aware of this belief system every day.)

And so I made pit'cha, put it in a bowl, cleaned up and watched Conan O'Brien for the first time ever (and laughed), and finally went to bed.

The Nutritionist

The week after I left the hospital, I made an appointment with CK, a nutritionist recommended to me by JudithP.

I don't know how I did it, but I got on the train and rode into the city. CK is a tall, cheerful woman who's a follower of food practice that encourages going back to very basic, traditional foods. Throwing out the low-fat/soy credo, and relying on bone soups, gelatins, grass-fed milk and milk products, and raw and fermented foods. You can learn more about this on westonprice.org

JudithP had introduced me to this practice a few years back, but, as I have admitted to Judith, I'm reluctant to follow gurus (there's-only-one-way types) no matter how sensible everything sounds. But I was in a bad way, and I needed help. And Judith was making a very ardent case for my health. I was tremendously moved. Judith's active encouragement made me feel especially valued. She also had the good sense to recognize a fellow-sick person who could be helped by this practice. I am very grateful to her.

MyMan was great. He even found grass-fed cow milk at Fairway's! I was so impressed. He bought everything I asked for. He's been so great about this, as crazy as the requests seem. He even remained quiet when, last night, I made pit'cha.

Hey, if you can sit still and endure three hours of the smell of boiling calf's feet jelly permeating the house, and never utter a word of complaint or disgust, I say you're a man among men!

Follow Up Visit with Dr. A. June 3

Well, I see I set out for myself a hi-level of output, but maybe we should consider this a wishlist.

Follow Up Visit with Dr. A, June 3, 2009

I've already reported on the scene in the waiting room. Suffice to say that the long-anticipated meeting with Dr. A went well. I'm off the albuterol, with a 98 percent oxygenation level. So I'm breathing good.

Antibiotics, Clindamycin and azithromycin end this week. And that conclude the good news.

The bad news is that there's 6 more weeks of prednisone, followed by a gradual weaning off of it. I've detailed some of the effects. Dr. A. says this period will be like I'm a "cripple." His word. And frankly, while I'm not crazy about the label, I do feel that way.

I'm due back to see Dr. A in 6 weeks; a CT scan in 3 weeks. Over and out.

It would be unfair not to mention the sense of relief I had finally seeing Dr. A. I mean, it was a month since I had pleaded with him to leave the hospital and get back home. In that month I had been a good patient, diligently following protocols, taking all my meds. But I had no feed back. This was really the first "report." Everyone's got to know "how they're doing."

So I'm doing good, there's just the road ahead.

Prednisone & the Bearded Guy

Today:

Cycle of Sleeplessness

Appointment with Dr. A

I make Pitcha

February '09

The Nutritionist

Prednisone & the Cycle of Sleeplessness

From early on in taking this med, I would awake around 2 a.m., alive, wired. This would happen about once in 7-8 days. But, not slowly from a dream, or disturbed by a passing noise, I would rise fully 100% awake and hungry. What followed was hours up, eating. All my ususal sleep aids, lavendar essence, hot milk, reading, in any combination, were no help. The truly strange part about this to me is that the next day, instead of being even more worn out, I was fine, or as fine as a I could be. I still couldn't walk the stairs without a "breather," but my mood, my focus, my attention span were all unaffected.

However, there has been a significant change: Yesterday, for the first time I really lost whatever composure I had. The nasty side of the drug is beginning to take effect. MyMay and I got into a real name-calling argument. We are usually so accommodating to each other! Worse, I didn't feel bad about it at all. I felt really angry and justified. This is not good. (P.S. We made up.)

Now, the following could be just me, but I'm blaming the prednisone. Yesterday, I met with Dr. A., my pulmonologist. But first, I had to wait in the waiting room for an hour and a half. I've written about the waiting room before. Remember the TV? Well, yesterday the room was filled with the usual Brooklyn mix, old, young, multi-culti, multi-hued people reading, watching TV and talking on their cell phones, when a tall, bearded man walked in. Wearing a short-sleeved cotton shirt, shorts and sandals, very Park Slope.

The guy waltzes in front of the TV, which is set about 6 feet up, hanging from the wall, announces he's lowering the volume, changing the channel, "if no one minded?" It happened so quickly, no one could say anything.

Now, there is a delicate balance in a waiting room. No one's happy to be waiting, everyone's sick and frustrated and in this case, everyone had made peace with One Life to Live or whatever soap was playing. I exchange tsks and looks with the other women around me. Some people have a real need to announce their presence to the entire world.

Then one itsy, bitsy, frail little lady, gets up and say, "Hey, I was watching that." Bearded-guy says "Oh, I guess you didn't hear me when I asked if it was OK?" Like are you kidding me? How snotty are we? So, he adjusts the volume, still lowish, and the channel and the itsy lady sits down and all is good with the world.

A few minutes pass. We all settle in. And then, Bearded-Guy gets a phone call on his cell. And he proceeds to speak in a basso profundo so full that everyone in this waiting room can clearly hear every word.

I couldn't contain myself: "Do you mean to tell me," I raise my voice from the back of the room, "that you lowered the volume on the TV so we could all hear your phone call???"

Now, I'm under 5 feet tall. The guy is about 6 something. Thankfully, he laughed.

Yeah, I'm not a happy camper these days.

February 2009

In February, I see I took a course of prednisone, per Dr. A. It started at 100 mgs, and progressed down to 10 over 20 days, i.e., day 1: 10, day 2: 10, day 3: 9, day 4: 9, etc. At the end, I was still sick. I think I saw him again as a follow up and was still suffering from time to time from fevers. This month, also I was on jury duty. Coughing, mucus continued.

March 2009

By March, I think I was referred to a lovely allergist in the city. There were albuterol treatments and inhalants, a prescription allergy pill. By now I was taking Advair and Spiriva to breathe. Patanase was a help. I was taking the elevator to get up and down the Lexington Ave. F Stop to get to work.

During this month, Ted, my brother, prescribed olive oil, garlic & vinegar mix to fix me up. A recipe provided by his ex-wife. More on my brother's natural remedies will be forthcoming. I think in March, too, I had pneumonia and was out of work for nearly a week. But, then I felt better.

More later.