My Bout with BOOP

Of Coats & Woodstock

2010-02-04T16:08:00.003-05:00

This is a picture of MyKid fooling around in my down winter coat. I've had this coat since before MyKid was born. In fact, as I've often related to him, when he was a baby I carried him around in a BabyBjorn while wearing this coat.

MyKid is now 11. Seeing him in this coat, I suddenly realized I've lived my entire adult life at the height of an 11-year old boy.

It's a sobering thought. I could riff for pages on what it's like to be the shortest kid in the class, the shortest woman in an office, and then the shortest oldest woman in an office. What I can't do, however, is tell you how many times people haven't seen me in a line, or in the subway, because I disappear behind much taller people.

I think it's part of the reason I felt so at home in Jerusalem. My height was just not that unusual there. (I also feel comfy on the Canal Street subway station in Manhattan, for the same reason.)

I guess this is just a time that I'm taking stock and trying to figure out where I will fit in in the work world, when I finally return.

One last note -- if you're of a certain age, or you ever visited/lived in the Catskills, you must see Ang Lee's movie, Taking Woodstock. It's a joy. Lee is such a talented director; he totally "got" the time and the place.

You'll be awash in nostalgia and cry for our loss of innocence. Sorry, let me restate that. What I meant by that pathetically inadequate and hopelessly trite sentence was: the movie brilliantly represents a time and a mood that some of you might recognize. Watching it, I felt sad for how innocent we were then and for the youthful optimism we lost, and how we lost it.

I remember listening to older people speak about things and wonder what they might have experienced in life that enabled them to understand life so much better than I did. What had made the world so much more transparent for them? Then, I seemed to understand so little of what was happening around me; I was clueless about how people operate and think.

Experience and T-I-M-E changed all that.

T-I-M-E

2010-02-01T08:59:00.008-05:00

Amazing things can happen in even the most ordinary of lives.

A family-related business deal of MyMan's recently fell though. Yet, within a few days, a former agent at MyMan's firm resurfaced and is now helping to regenerate MyMan's business.

MyMan has been looking at the negative side of things, of late. Suddenly, last night he got a phone call asking him to participate in an early morning minyan. One of our synagogue members is saying Kaddish for his beloved son. Not feeling too well and sidelined with a bad cold, MyMan still raced out early this a.m. to participate in the 6:15 prayer service. Sometimes being asked to do a good deed for another person really takes you out of yourself and puts everything else in perspective.

The title of this blog, T-I-M-E refers to a story MyMan told me when we were first dating. When his first marriage broke up, he had a friend in whom he confided. The friend said that the only thing that will help get past the pain is T-I-M-E (which he spelled out for him).

You just have to see things through and believe things will get better. And you know what? Sometimes, just sometimes they actually do!

See Me Now!

2010-01-28T10:09:00.004-05:00

Did I mention I was losing my hair? This has been going on since November. Not clumps, but strands. After every shampoo there's a big shmooshy mound of hair at the drain. I can even see my scalp now, which I barely could before.

GoodFriend suggested I take the issue to a dermatologist. I went earlier this week and should get blood test results back by Friday.

Hopefully the tests will confirm what the doctor suspects: weaning off both prednisone and an anti-depressant may be the cause.

So, BOOP and prednisone are still causing me to examine my body and my relationship with it.

Before I was sick and before I took prednisone, I had a different attitude toward my body and my ailments. I didn't want pictures taken of me because I was embarrassed about how overweight I was.

Prednisone taught me how to accept and work with the body I have. The sickness led to yoga which is teaching me every day that my body is still alive, still breathes and still, despite my age, can become more supple.

Prednisone taught me that everything is relevant. After seeing photos of myself from the summer, at the height of my "moon-face-ness," to me I look gorgeous now. I can accept the signs of aging a little bit easier.

Interestingly, folks at synagogue have stopped by over past few weeks to tell me again, and again how "great" I look. I know they really mean the bloating is gone, but as MyMan pointed out (he was reading my very thoughts at the time), they probably never "saw" me before I was sick. (He's so smart! He's also funny, but that's another story.)

When I became bloated it was sudden and our friends and acquaintances hadn't captured a memory of how I looked as a "regular" person. Now that the bloating is gone, they're actually seeing me for the first time.

Embracing how I look now has also led to embracing my age, and accepting the limitations that come with it. I don't know how one led to the other. Perhaps examining myself honestly in the mirror has led to this. My age and my appearance will be real issues as I begin to plan to head back to work in the coming months.

Speaking of work, or as Maynard G. Krebs used to say, "Work???," I plan to report on my search for a new professional path, in coming blogs, as well as:

a viral rumor and how it swirled around us, and
herbs and liver (really).

Adios for now & Happy Birthday of the Trees!

A Great Lot of Religion and G*d

2010-01-24T20:25:00.005-05:00

It has been quite a week for issues of religion and belief.

As we watched the reports from Haiti, MyMan and I were both moved by one story in particular. Apparently, at night, survivors gather near the locations of their now-ruined churches -- survivors who have no water, no food, nothing -- and they sing hymns to G*d. It's a stunning thought that despite everything, their spirits are not crushed; that they can come together to praise G*d.

Even our Rabbi says it is belief in G*d that keeps them alive, sustains them.

Meanwhile, a young man performing his regular Jewish prayers on a domestic flight in the U.S. was arrested and his plane diverted. Apparently, shaken-up flight attendants fearful of an in-air terrorist attack and also unacquainted with Jewish ritual phylacteries (aka tefillin), thought the little box might contain explosives and the leather bands were actually wires.

The story would be strange -- some might even find it amusing -- as it was reported. But the incident took place during the week of Parashat Bo, i.e., the week during which the Torah portion we study, called "Bo", includes in it two separate passages in which G*d commands the children of Israel to put on tefillin.

Now there are 52 weeks in a year. Is it mere coincidence that on the exact week in which Jews around the world are reading and studying this injunction, a young man is actually arrested for following these divine orders? You can't help but think that The Main Entity, above, is really trying to tell us something.

Finally, MyKid is a bit shaken-up himself this evening. At a playdate, a younger playmate practically started a fire by spraying a plastic action figure with deodorant and then holding it over a flame in the kitchen. The alarm went off and the retired grandmother responsible for the little boy woke from her nap to ask what happened. The boy was not honest with the caring older woman.

We all feel that we got our own wake-up call with this incident and MyKid will not be having play dates over there again.

I have an appointment this week with a dermatologist to look into my hair-loss issues.

It is very interesting to note that on December 27th, 2009, I got sick again, with some fever, coughing. It has since passed, but it really gave me a start, because it was as if my body was "remembering" being sick by being sick on almost the exact date one year later. It was New Year's Eve '08 when I suffered by first BOOP symptoms.

Strange stuff this BOOP.

Back to the Blog

2010-01-19T16:13:00.004-05:00

Here's me, now, all dressed up for a family party. No longer a "blown up grown up."

It's been two months since I last "blogged." As stated previously, coming off the prednisone has been a real shock to my system -- or I should say being on and then getting off prednisone has had significant effects on my life.

Besides those I already documented in previous blogs, I am currently losing my hair and sleeping a great deal.

My hair doesn't come out in clumps. But if I work my fingers through my scalp, or when I shampoo, strand after strand comes out in my hands.

Also, ten hours a night of sleep is the norm now.

I have neither the focus nor the energy I had on prednisone.

However, I have found time for some things. During November and December I spent a lot of time baking cookies and knitting Hanukkah and Christmas gifts.

And did I mention I slept a lot?

So, what's the cure?

Liver, onions, and Siberian ginseng and licorice in essence form.

More on the cure, later.

Eczema, Hematoma & the World Series

2009-11-05T17:39:00.005-05:00

If the last two weeks all I did was sleep in and drag myself around, this week the tiredness is spread out differently. Now I get up and out of bed at a decent hour, but I kind of move slowly and need to go to bed early.

Some nights I stayed up and watched every inning of the World Series, and some nights, like the final last night, I just couldn't stay up past 10:15. If anyone is interested, MyMan was rooting for the Phillies (he's a Met fan) and I was rooting for the Yanks (I think they have great back stories...).

My arms ache and it hurts to climb stairs, yet walking is fine. So yesterday I took the dog out for a walk that was about 3 miles long, but I was beat afterwards. Today we took a shorter walk.

I also have little patches of eczema all over my arms and legs as well as hair loss and dandruff. My dermatologist warned me about the eczema and I have a feeling that the dandruff is part of that. Hair loss? I'll discuss it with my pulmonologist the next time I see him.

My back aches something terrible, but for a totally unrelated reason. The day my mother and brother moved out of our "compound," i.e., our downstairs apartment, I slipped and fell on my bum. Really hard.

I have a hematoma the size of my hand. It ain't pretty. The prednisone is partly to blame for that, too. Prednisone makes your skin extremely sensitive to bumps and bruises. A man we know who has taken it for years has red blotches all over because his skin has become so sensitive.

NaNoWriMo
Also, I'll be writing less in the coming weeks, since I've begun participating in NaNoWriMo -- National Novel Writing Month...50,000 words in 30 days -- wish me luck!

Sleepy Time Woman

2009-10-22T12:38:00.003-04:00

It's been a wild ride coming off of prednisone. Now that I've weaned off of the medicine -- it's been two weeks -- the new effects include:

Tiredness: Walking for any length of time results in a general feeling of tiredness. My breathing is fine, it's my body that can suddenly seem tired and worn out, like an old sock.

Sleeping: Today for example, I got out of bed at 11 a.m., after nearly 11 hours of sleep. For the past week or so I've logged in about 9 hours of sleep nightly. Need I say more? If I was normal and well, I'd be up at 6:30 or 7 and ready to go...

Lethargy: And now, once I do get up, I ain't exactly a ball of fire...

I read the newspaper, I eat breakfast and before you know it, half the day's gone. What a difference from when I was on prednisone and I never stopped doing things, always had something "important" to do.

On prednisone, I had lists of things to do...and I did them. I was unstoppable. I wrote on this blog at two or three times a week. Now I can barely do it twice a month!

Muscle aches and pains: Knitting, one of my favorite activities, hurts my arms. Walking can cause pain in my legs. I've had sudden muscle spasms in the muscles behind my knee. My muscles seem to stiffen up in the evening, but is that the prednisone or my age? And finally, yoga, which gave me so much joy, has become really difficult. But, I will get back to it very soon!

Visit to the Pulmonologist
Finally, I was back at the pulmonologist yesterday, Dr. A. I'm still fine and all the problems I've outlined above he ascribed to this post-prednisone period. He estimates this will continue for several more weeks.

In the words of Dr. Seuss, "We shall see, we shall see."

Back at the Blog

2009-10-07T21:37:00.003-04:00

Update
Last week was my last week on prednisone; I was taking 5 mgs every other day. This week is the first since April 2009 that I'm not taking any prednisone.

Naturally, last week I began to get the sniffles. Then, that turned into sneezing and finally I was coughing up phlegm. I thought I was having a relapse, so I called the doctor. It felt like that last week in April all over again, when I was diagnosed with a cold then an allergy, bronchitis and then finally ended up in the hospital.

As with that last week in April, I was scheduled for a CT scan. Happily, the CT scan showed my lungs were clear and clean. This time Dr. A,the pulmonologist pronounced that I was experiencing allergy symptoms and not BOOP again. Hurray!

Eye Doctor with an Eye for Young Ladies
Earlier in the week I went to see an optomotrist at the suggestion of my GP, Dr. B. My eyesight needed to be checked, because it too is affected by long-time prednisone use. This turned into one of the most unpleasant experiences I've had with a doctor in a long time. This guy was a first rate putz, in my opinion of course.

Condescending, pompous and rude, he insisted that the fat pads under my eyes would need to be removed. He went on and on describing and naming them. The conversation went like this:

"I thought those fat pads were part of the puffiness from the prednisone. I thought when all of my puffiness disappears, those fat pads will go too."

His response: "I don't care what medicine you're on, they will need to be removed."

I decided not to argue about that.

A few minutes later I said that "I had a couple of questions."

His response: "The way this usually goes is I finish the check up and then I ask you if you have any questions. But, since you've already interrupted me, you can go ahead."

Was this guy kidding or what?

Honestly, I don't remember what I needed to ask him, but I do remember quite clearly that he was being awfully charming and nice to the very young, blond young woman who he saw just before me.

It ain't easy being an old, ugly lady, even if the ugly is temporary and I'm are charming and witty most of the rest of the time. :-)

Other Issues
These last few weeks have also been filled with family issues, religious holidays, a writing class, house cleaning, discussions about the swine-flu vaccination, prednisone-induced lethargy, sudden naps and sleeping in, sadness and I don't know what else....that there's been no time for this blog.

But I'm back now.

It's Been a While

2009-09-24T20:36:00.007-04:00

I've been tired and out of it. But, there's only a few more days to go. And then I'll be done with prednisone.

Thank G-d.

This is me 9/22/09

This is me 7/25/09

Sorry the photos aren't professional quality, and my wardrobe could be upgraded, but I think you get the general idea.

It's been quite a trip.

G'mar Hatimah Tova -- May you be inscribed for a good year!

Weaning -- Weeks 7 and 8

2009-09-09T11:13:00.006-04:00

Week 7

MyMan, MyKid and I went on a long-planned for trip to Niagara Falls last week. Dr. A. had warned that this would be a difficult week for me, because of the prednisone weaning process.

Last week was Week 7 and I was taking 20 and 5 mgs on alternating days. Luckily, I was in the passenger seat for all of the driving. So for half of most days, I was basically at rest.

Most days I could walk and some days we did a lot of walking. I did find, as the doctor had predicted, that I was weaker on the low dosage days.

One day, MyMan and I were deciding who should take MyKid to a waterpark. We planned for me to do it on my "high" dosage day. It seemed only fair, because MyMan carries so much of the responsibilities due to me being sick. And I felt I could do it.

But, after morning activities, I was tuckered out. I had to rescind my offer and the two "boys" went off to the waterpark.

Once they left, I fell asleep for 2+ hours. I hadn't slept during the daytime since the earliest days of being sick with BOOP.

Week 8

The prednisone dosage this week is 20 mgs every other day.

On Tuesday, MyKid went back to school. On Tuesday, I got up, made his breakfast and lunch, ate my breakfast, took my pills and then went upstairs to "rest."

I ended up sleeping for 2 hours.

Today, too, I slept for 2 hours before noon as well.

Clearly, it's the effect of the prednisone.

Clearly, I'll have to cut down the activities I had anticipated doing.

Hard Week

2009-08-29T20:45:00.002-04:00

This past week was very difficult. I'm just weak.

The worst day was when neighbors on one side of our house had jackhammers going full blast, while the neighbor on the other side was playing loud music all day. It was unbearable.

More later.

Vampire Hours

2009-08-24T23:58:00.003-04:00

Maybe I'm operating under the influence of the Sookie Stackhouse/"Southern Vampire" books I've been reading, but I have noticed for several weeks that I really only start to feel like getting up and out late in the day.

I don't literally rise at nightfall, but I sure want to be out in the cooler part of day, which is evening. The heat is oppressive. I just drag myself around in the house during the day.

Like now, it is after 12 a.m., and I'm working on a knitting project. But, it is time to go to bed.

The prednisone is giving me head aches and pains in my legs. I feel weaker in my upper body, but clearer in my mind.

And thank G-d for that!

Auto-Immune Disease

2009-08-20T19:03:00.007-04:00

BOOP as an Auto-Immune Disease

My husband's cousin and her husband, both doctors, visited with us this week and cleared up a mystery regarding prednisone.

I understood that prednisone was an immune-suppressant medicine. I would read the list of diseases prednisone was prescribed for and not understand how/where BOOP fit in.

But, according to the TwoDocs, prednisone is prescribed for autoimmune diseases. BOOP, apparently, falls into that category. This means that my immune system over-compensated in response to an infection, possibly the initial bronchitis, and BOOP symptoms were the result. At least that's what I understood from TwoDocs.

Maybe this was clear to everyone else. I don't remember anyone using the term until now. I have been so focused on taking the medicine and getting well.

What a shock! I'm still trying to process this information.

Feeling Noticeably Better

I don't know why or how, but I feel more like myself this week. True, there are still aches and pains, as well as incredible amounts of perspiration. And yet, somehow, internally, I feel as if my "true" self has come back. I'm experiencing less impatience and anger, which means the rest of the family is experiencing the benefits as well.

Also -- and this was the real litmus test -- I can finally make it up the stairs without a breather/stop on the way.

In fact, I must have walked up half-a-dozen flights of stairs in the subway today during an expedition into the city with MyKid. Trying to satisfy MyKid's "manga jones" we made stops at St. Mark's Comics, Forbidden Planet and Pearl Paint. I had a lot of fun. I think he did too.

Could it be the kombucha that's made the difference? The mysterious elixir I couldn't drink for weeks and weeks, suddenly is very palatable to me again. It really satisfies the need for something bubbly.

If Dr.A. (the pulmonologist) finds out I'm drinking something that's "raw" he'll be upset. But, doesn't fermentation purify/clean in the process?

Appearances, Yet Again

2009-08-18T18:00:00.003-04:00

Appearances, Yet Again

Initially, I had my most recent photo here at the top of the page, but it's a pretty daunting sight, so I moved it down to the bottome of the page.

Believe it or not, it appears that the bloating is coming down. Check out my postings from late July and I think (hope) you will see a difference.

This week the prednisone dose is 20 mg. and 15 mgs. on alternating days.

Last week the dose was 20 mgs. daily.

People on the Street

Of course, even though the moon-face effect is coming down, my face is still -- let's face it -- pretty grotesque. So, some people still turn away from me as I pass them on the street.

And the more they turn away, the more I try to make eye contact.

I know it's mean, but I can't help it. It amazes me that both men and women show no mercy, sympathy or compassion. MyKid says they're the ones who are mean!

They see something ugly and they avert their eyes. Today, when I looked directly at one woman, she not only averted her eyes, but she turned her head away. Did she think my condition is catching?

At the suggestion of VeteranFriend, I am doing Yoga whether I have "enough" time or not. Even if it's only half an hour, and not the entire DVD I'm not using, something is better than nothing. And so, Yoga continues. Right now I'm working with a DVD for weight loss through Yoga. And do I perspire. It's a wonderful thing.

Memoir writing class continues.

Summertime Regrets

Summer is coming to an end. I really feel tremendous regret about how another summer has passed by and I haven't done all the things I hoped and planned to do -- before I got sick, of course. These activities would include bicycling, swimming, and generally being more active, and getting more sun (vitamin D).

But, this time I really do have an excuse! I've been sick.

Fishy Doings

2009-08-14T00:39:00.005-04:00

The main reason I haven't been writing is because I am so tired. I sleep a lot. I don't have much energy. And when I do, I seem to overdue it. Thank you prednisone!

On Wednesday, I joined my brother and son on a fishing expedition in Sheepshead Bay. We went out on a fishing boat on an overcast, cloudy and intermittently rainy day.

As a result, on Thursday, I was exhausted and barely able to do much until very late in the day.

But, MyKid did catch a fish. Mom and MyBro did not, while everyone else around us kept reeling them in. Besides fluke, fisher-people on the boat caught (and threw back in) an "alien" fish and a baby shark.

This is the baby, upside down, after a ship worker disentangled it from knots knitted by a bunch of crossed fishing lines. Who knew Brooklyn had real sharks?

20 mgs and Counting

2009-08-09T16:50:00.003-04:00

Today, August 9, starts the week of 20 mgs daily of prednisone. Here's me now. According to Dr. A., this should be the week I start loosing weight.

I'm really looking forward to it.

I've begun sleeping more, as much as 10 hours a night. I have no energy and barely can move around. The energy level is similar to that of the first weeks home when I was taking the steroids and the antibiotics at the same time.

Furthermore, I've got a bad taste in my mouth nearly all the time. Yesterday, I ate a sliver of peach to taste, and then checked my glucose level: above 200. Not good.

At the urging of a CloseFriend, I looked more closely at a diabetes diet, and will continue to try to curb carbs and sugars.

More later...

The Miracle of the Houseplant

2009-08-06T21:53:00.006-04:00

Being home a lot makes me look more critically at the way our furniture is set up. During the height of the prednisone intake I was so "energized" that I even moved furniture around on my own, when no one else was home. It was the only way to try out a new look without anybody being disturbed or snickering.

But in our bedroom I thought that if we moved my bureau out of a sunny corner of the room, we could place a rocking chair there instead and have a sun-filled reading corner. I managed to get MyMan to help with the move and then I put up a few new pictures, trying to give the room a Hawaiian/Polynesian 30s look.

MyMan really liked having the light-filled reading space. All we needed to complete the corner was a nice pad for the rocking chair and a plant to fill out the corner.

I started pricing the kind of tall banana plants I thought would look good in that corner. Once I realized the cost, I vowed to myself not to have to purchase the plant. Somehow, I would find a good plant on the street. I just knew I would. This promise was silent, I never wrote it down either. I just realized that if I was patient, I would find the right plant.

How do we know these things? I found some beautiful plants in front of a mobile phone store, but they weren't giving those away.

Then on Monday, I was returning some books to the library and took a different route. Sure enough, in front of one house was a beautiful houseplant sitting in a water bottle. It wasn't just a any houseplant, it was a tall plant, exactly the height I was looking for. And the plant was long and leafy, perfect to mimic the palm tree pictured in the little poster I put on the wall.

I checked with the inhabitants of the house and they said it was OK for me to take the plant.

How do you like that? If only we could have all of our vows and prayers answered so easily.

No Longer Sleep Deprived & Correspondence

2009-08-05T17:01:00.003-04:00

No Longer Sleep Deprived

I woke up at 9 a.m. this morning. So, except for waking at 6:30 a.m. to let the dog out, I slept 9 hours!!

Glorious sleep. I never ever sleep that late. But because everyone is home, and no one in the family has to leave early for camp, school or work, I had no need to get up either. WOW! This is wonderful.

So that's a significant change since the 5 1/2 hour sleep time I was logging in during the 60 mg prednisone days.

Correspondence

I have been corresponding with A Friend of a Friend, comparing our experiences with BOOP, which she had about 10 years ago. She and I compared the quality of care, insured vs. uninsured. At her suggestion, I am sharing this part of our correspondence:

...At the end of my hospital stay, there were several doctors involved in deciding the final diagnosis. The degree of cautiousness, offhandedness, seriousness really went from one extreme to the other. The British-accented doctor was obsequious as he deflected to the head of the department, who I believe was from East Asia. This department head was so refined and serious and the only one who asked any original questions.

One doctor, who I believe was from India, ultimately seemed less concerned than my own American-born pulmonologist, Dr. A., who was very cautious and was the one who originally asked for the confab to ensure it was the right diagnosis.

Is it cultural, personality, internal hospital politics? Who knows?

So, I'm beginning to learn that while payment is surely an issue, doctors are just people too. Some better, some worse. Some more interested than others. My own pulmonologist is very effective, but getting him to return phone calls is an issue. Is it because of the health care system or just his personality? Have I become too much of a "nudnik?" Who knows?

A Day at the Beach...

It's summer, we're free and so we went to the beach. Manhattan Beach Park. It was great. Of course, folks continue to turn away from me so they won't see my face. I'm still strange looking. But, now everything is relative.

L'Hitra'ot

25 mgs and Counting

2009-08-03T11:31:00.007-04:00

Yesterday, as part of the weaning process, I started taking 25 mgs of prednisone.

The significant changes thus far include a new tolerance for coffee. The taste of coffee (decaf) was so bitter, it was unbearable since I started taking the prednisone. But over the past few days I actually drank a few cups and enjoyed it.

Also, while the wrinkles are coming back as the swelling subsides, there is no weight loss yet according to the scales. Dr. A. indicated that losses could begin next week, when I drop down to 20 mgs. a day.

Most likely, the August postings will be short, now that MyKid is finished with camp and there are three of us at home, all day. There are many more distractions and demands on the adults' time.

Hits and Misses

2009-07-30T15:25:00.003-04:00

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

2009-07-28T18:11:00.003-04:00

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

2009-07-27T11:49:00.005-04:00

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

2009-07-24T08:45:00.007-04:00

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

2009-07-22T20:14:00.005-04:00

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

2009-07-20T13:13:00.004-04:00

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

2009-07-18T23:01:00.004-04:00

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

2009-07-15T18:39:00.005-04:00

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

2009-07-13T20:25:00.005-04:00

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?

2009-07-13T20:19:00.005-04:00

"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

2009-07-10T19:51:00.006-04:00

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

2009-07-09T08:16:00.005-04:00

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

2009-07-08T10:58:00.006-04:00

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"

2009-07-08T10:33:00.002-04:00

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

2009-07-05T14:12:00.006-04:00

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

2009-07-02T19:10:00.005-04:00

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

2009-07-02T19:00:00.003-04:00

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

2009-07-02T18:49:00.003-04:00

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!

My Conversation with Dr. Gary Epler

2009-06-30T21:53:00.003-04:00

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:

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.
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

2009-06-28T07:59:00.004-04:00

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

2009-06-28T07:56:00.003-04:00

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!

2009-06-26T17:26:00.006-04:00

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

2009-06-26T11:03:00.005-04:00

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

2009-06-22T15:08:00.006-04:00

–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?

2009-06-22T07:07:00.003-04:00

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

2009-06-21T23:05:00.020-04:00

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

2009-06-20T17:01:00.008-04:00

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

2009-06-18T23:54:00.011-04:00

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

2009-06-15T11:34:00.002-04:00

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

2009-06-14T10:09:00.001-04:00

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

2009-06-12T14:45:00.002-04:00

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

2009-06-09T21:12:00.001-04:00

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

2009-06-09T19:56:00.002-04:00

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

2009-06-09T13:37:00.001-04:00

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

2009-06-07T18:01:00.001-04:00

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...

2009-06-05T15:14:00.000-04:00

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

2009-06-05T10:22:00.000-04:00

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

2009-06-04T15:55:00.000-04:00

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

2009-06-04T15:34:00.001-04:00

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

2009-06-04T15:16:00.002-04:00

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

2009-06-04T09:24:00.002-04:00

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.

2009-06-03T12:46:00.001-04:00

Documentation of the "BOOP Experience" continues. With folks "looking over my shoulder" I'm a bit self-conscious. So much to round up and say. So, I'm using lists today. Details to follow.

Which reminds me of my one of my favorite Jewish jokes: What's the classic Jewish telegram? "Start Worrying Now. Details Follow"

Lists & Background:

Since April 29th, I've been to the

hospital (for a week)
pulmonologist
an internist
a pathologist, I think, for a follow up visit
a second pulmonologist (when mine was on vacation), and
a nutritionist. (The last, at the suggest of JudithP to counterbalance the chemical meds. Thank you Judith for the encouragement!)

In the Hospital (May 1-May 8), I was Seen by

the pulmonologist, Dr. A
the infectious diseases doctor
pulmonologists, Dr. P, Dr. L
A testy resident
a lot of great nurses and nurses aides
A doctor who did a biopsy on me
the head of pulmonology, Dr. R, and a retinue that trailed after him, reviewing the results of my biopsy

In the Hospital I Had

10 hours in the emergency room waiting for a bed on a Friday night
oxygen administered
albuterol treatments
pills, not always sure what
leg massagers
TV and telephone
CT scans
a surgical biopsy
morphine drip
shots, not always sure what
a misdiagnosis of tuberculosis resulting in a private room and bathroom, folks coming in with duck masks (I still don't know what Dr.P looks like from the nose down), spitting in a cup -- last cup lost and had to redo thus prolonging isolation -- and a whole lot of frustration. On the other hand, hey, a private room.
A lot of wonderful friends, family and the rabbi & family coming to see me, bringing flowers and offering support (even making time for me while our community dealt with a heartbreaking tragedy)

Food I asked for in the Hospital

Kosher food, no soy products

Food I received in the Hospital from Staff

Non-kosher food
Kosher food
Kosher food with soy products
kosher food with soy products
Kosher food

The List of Meds I received When I Left the Hospital

Clindamycin , 300Mg, 2/3x a day
Azithromycin, 500mg, 1x a day
Prednisone, 20 mg, initially 2 a day, upped to 3, 1x a day
Metoprolol, 25 mg, 2, 1x a day
Nexium, but Oxford would only approve Oemeprazole, 20 mg, 1x a day
Albuterol Inhalation solution, 4x a day, every six hours.

Dr. A's List (Internist) to Support the Above

Acidopholus
2 tablets Pepto Bismol, 2x a day
TUMS EX 2-3 a day

The Nutritionist's List

I can't do CK justice by just making a list of her recommendations. I will write about this in the next post.

2009-06-02T14:29:00.003-04:00

I'll be updating this as I can. So, with a month of treatment behind me, I wanted to start looking back and reporting on what it's like to live with BOOP at the same time.

Living with BOOP: First MyMan corrects me -- I am not an invalid. To me "invalid"conjures up WWI vets staring into space in shock, pushed around in wheelchairs by Susan-Boyle-like nurses in white caps. Plaid woolen blankets cover their laps. I'm not that kind of an invalid.

But, I can't take a flight of stairs without a breather in between. Standing is a stretch. The dog walks me; I don't walk the dog. Walking even once around the block, with our gentle inclines, is trying and I need to stop for breath. Sometimes breathing burns.

Any exertion results in perspiration. Walking, standing too long, a visit to an airless library...and I'm dripping. Or, I can wake up in a sweat, drenched, not damp, wet. I'm talking about wet hair, wet pillows, wet clothes, gobs of sweat dripping off my forehead and jaw. Suddenly, I'm a waterfall. Is it the disease...or is it my treatment?

I keep forgetting to touch on my appearance. No wonder. To be blunt, I look like a chipmunk, or a squirrel in mid-spring with nuts tucked into my expanding cheeks. I look away from mirrors. I can't bear looking at the transformation. I'm sure people on the street think me disfigured, gross, strange; worse: old. this is a result of 60 mgs daily of the steroid, prednisone.

History: We had made reservations at our favorite hotel in Saratoga Springs for New Year's Eve December 2008/09, but on Dec. 30 I came down with a fever of102.6. Plans were cancelled. Responses were mixed:

MyMan was relieved he didn't have to drive.

MyKid was disappointed -- no indoor pool to play in.

I'm 58 years old, in fairly good health, what was I doing with so high a fever? Here's what I remember from the first month.

January 2009: Dragging myself into the city to be seen by my ManhattanDoc, who didn't see bronchitis, but prescribed levaquin, apparently the protocol antibiotic for chest problems.

Then he was on vacation; unavailable. About 10 days home coughing, blowing out yellow mucus, lacking strength, taking the meds. It felt like a bad, messy flu.

Hoping I could see the inauguration, I did. Also I enjoyed watching the heroism of Sully in the Hudson River practically as it happened. (Greatly heartened by this.)

Back at work, I learned I wasn't entitled to sick pay, because my probationary period was still being held up. Work Drama will be taken up separately.

Sick, tired and dragging myself this time to a LocalDoc who immediately saw bronchitis/pneumonia, sent me for chest x-rays and referral to Dr. A, the pulmonologist.

The visit to the pulmonologist was a revelation. Never having been to one before I was confronted with an array of tests and treatments that staff took for granted. My favorite remains the "pointer pincher" to measure my heart rate and my oxygenation levels. I hated blowing into the blower. The albuterol treatment is given as if everyone in the world had experienced this before. I remember the dry, tasteless mouth it left me with. I resented having to explain that this was all new to me. I was annoyed.

I was just generally annoyed. It didn't help that I was spending hours in the waiting room, with dozens of sick or asthmatic people and -- the ultimate insult -- a not very good choice of magazines. Now in Manhattan doctors' offices, there's usually a good choice of reading material (ex: The New Yorker, Glamour), but no TV. In Bklyn, apparently there's usually a TV, but the reading material is lacking (Fishing). Apparently, this is one area where Bklyn's vaunted intellectualism is lacking. Or the hipster literati don't get sick yet.

But most of all I hated coughing and blowing and not really producing anything good and just not knowing. Maybe that was the worst thing of all. The doctor officious, the staff courteous, but ultimately no answers. This was a state that continues, even today, six months later. I could only think,

Where's my air?

Why was I sick?

Was I sick?

What did I have?

Tomorrow: the cycle of sleeplessness; the medicine protocol

June 2, 2009

2009-06-02T09:07:00.004-04:00

This blog will track my somewhat rare medical condition, BOOP, aka bronchiolitis obliterans organizing pneumonia. If you're looking for all things Betty, you're on the wrong blog.

Since I'm not a medical professional, I'll leave the professional descriptions to them. For definitive medical lit on BOOP, please check out: http://www.epler.com/boop1.html

This is a great layperson's explanation, check out: http://www.epler.com/BoopWhat'sBoopDiseaseInformation.htm

Summary: Now on a month-long regimen of antibiotics, prednisone, inhalant, heart medicine, I am unable to work, suffer from sweats, loss of stamina/health/strength and am essentially an invalid, staying at home, watching HGTV and sometimes knitting. As Dr. A. (pulmonologist) put it -- it's not brain cancer or heart surgery, but it's serious.

Dr. B (internist) said it was "rare."

I'm just going to call it "uncommon."

How Did This Happen? Since late December '08, I've had bronchitis, pneumonia, allergies, fevers. Hacking cough, mucus, mucus and more mucus. Taking (unpaid) sick time from work, back at work, sick leave again.

CT scans were inconclusive. One month ago, I was finally admitted to the hospital with low oxygenation levels and a decision to do a surgical biopsy.

In addition to my introduction to morphine drip (which felt like doing drugs with a "pass") this hospital stay included a detour into a private isolation room, complete with special masks, due to a suspicion of tuberculosis.

Cause: (the best part) The doctors don't know. Treatment: This, they know. Go figure.

The plan: Updates on progress. Details to follow.

Comments welcome, other BOOP sufferers -- how are you coping?

My Bout with BOOP

Of Coats & Woodstock

T-I-M-E

See Me Now!

A Great Lot of Religion and G*d

Back to the Blog

Eczema, Hematoma & the World Series

Sleepy Time Woman

Back at the Blog

It's Been a While

Weaning -- Weeks 7 and 8

Hard Week

Vampire Hours

Auto-Immune Disease

Appearances, Yet Again

Fishy Doings

20 mgs and Counting

The Miracle of the Houseplant

No Longer Sleep Deprived & Correspondence

25 mgs and Counting

Hits and Misses

One Day Honey, One Day Onion

Diabetes Watch and Yoga Poses

The Weaning Regimen

Mixed Emotions

What is Cushing’s syndrome?

Bumping into BOOPers

Effect on the Family Part II

Prednisone Blues

Litmus Test

Embrace My Inner Freak?

Before We Light Candles

Prednisone -- Some Positive Ruminations

Appearances, Again

"Coping with Prednisone"

Weaning - Week One, Day One

"Clean House," BOOP and Me

The Effect on the Family

A Slow and Difficult Week

My Conversation with Dr. Gary Epler

An Old Story

All Kinds of Insomnia

Good News!

Lance and Me - Irony VII

Ironies II Through VI

i⋅ro⋅ny

Dr. Epler Where Are You?

Intensification

Ironies I

I Should Have Been Blogging

Mysterious Changes

Yoga & Prednisone

April 2009

The Carrot Coda

Documentation

More Appearances

Appearances

Hunger

Making Pit'cha - Calf's Feet Jelly

The Nutritionist

Follow Up Visit with Dr. A. June 3

Prednisone & the Bearded Guy

June 2, 2009