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...