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?