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.