Eczema, Hematoma & the World Series

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

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

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

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

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

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

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

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

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.

More on this later.

Fishy Doings

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

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

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

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

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

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

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

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

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

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

Hit:

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

Miss:

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

Hit:

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

Miss:

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

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

One Day Honey, One Day Onion

Yom Asal/Yom Basal

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

In Arabic, the words honey and onion rhyme.

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

So, yesterday was honey...

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

...and today was onion.

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

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

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

Prednisone Perspiration

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

But not since prednisone...

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

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

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

Until I blog again, Adios!

Diabetes Watch and Yoga Poses

Diabetes Watch

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

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

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

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

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

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

Yoga Poses

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

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

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

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

Namaste

The Weaning Regimen

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

Wk Mgs Notes

1 40 take all in morning

2 30

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

4 20

5 15 alt 20 low dose on MWF

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

7 5 alt 20 low dose on MWF

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

9 15 alt days

10 10 alt days

11 5 alt days

On Friday, MyKid stayed home sick.

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

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

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

But, my legs are weak.

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

But I got up.

Have a good week!

Mixed Emotions

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

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

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

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

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

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

What is Cushing’s syndrome?

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

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

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

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

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

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

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

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

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

On the other hand, I'm still here!

Thank you G-d!

Bumping into BOOPers

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

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

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

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

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

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

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

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

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

A note about fate.

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

Effect on the Family Part II

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

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

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

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

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

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

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

Everything's back to normal in a few minutes.

But, not before I apologize for blowing off steam.

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

Even if your face is round as a fishbowl!

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

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

Yet another gift of the prednisone.

Prednisone Blues

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

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

On to the Prednisone Diary:

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

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

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

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

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

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

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

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

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

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

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

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

A little culcha is always a good thing.

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

Litmus Test

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

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

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

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

Embrace My Inner Freak?

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

"Ugh, how repulsive."

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

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

But it feels good to get it out.

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

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

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

Before We Light Candles

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

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

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

I'm lucky and blessed.

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

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

Have a wonderful Shabbat.

Prednisone -- Some Positive Ruminations

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

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

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

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

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

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

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

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

More later.

Appearances, Again

This is the lump on my back.

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

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

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

IrishGirl emailed to say she can't recognize me.

Surprise! I can't recognize myself.

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

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

"Coping with Prednisone"

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

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

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

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

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

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

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

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

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

'Nuff said.

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

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

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

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

Weaning - Week One, Day One

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

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

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

This is today.

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

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

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

And now for the good news.

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

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

"Clean House," BOOP and Me

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

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

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

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

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

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

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

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

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

So, what's my fascination?

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

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

Either I had allergies or bronchitis or pneumonia.

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

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

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

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

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

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

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

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

So, I would like to have my life back!

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

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

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

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

Or maybe it was just a prednisone-induced dream.

The Effect on the Family

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

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

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

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

A Slow and Difficult Week

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

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

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

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

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

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

My Conversation with Dr. Gary Epler

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

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

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

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

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

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

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

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

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

An Old Story

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

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

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

But, I had forgotten the story of IrishGirl.

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

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

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

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

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

So today's hackneyed lesson children is:

Focus on the journey, not the desired results.

All Kinds of Insomnia

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

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

Good News!

Just back from the doctor.

The CT scan report was great. To quote:

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

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

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

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

Seriously, what more could you want?

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

Now there is the prednisone to deal with.

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

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

Regards to all...

Lance and Me - Irony VII

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

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

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

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

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

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

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

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

Ironies II Through VI

i⋅ro⋅ny

1  [ahy-ruh-nee, ahy-er-] Show IPA

–noun, plural -nies.

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

2.Literature.

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

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

3. Socratic irony.

4. dramatic irony.

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

6.the incongruity of this.

7.an objectively sardonic style of speech or writing.

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

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

Ok. Thank you Dictionary.com.

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

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

Everyone keeps coming up with the ironies of this illness.

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

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

to the ridiculous,

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

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

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

And as GraciousRelative pointed out,

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

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

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

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

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

Oh, where will it end?

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