Of Coats & Woodstock

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

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!

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

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

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

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....