Saturday, May 22, 2004

Blue and Freaked

Just when I thought "Yes this is it, I'm going to KICK THIS".

I was doing so well. I thought by the end of the year, I'll be OK to make babies! ;)

... moved away from my cosy flat that was next to the gas station (!) ... to dilapidated digs in the FRIM forest reserve... FRESH AIR

... eating heaps of budget-busting organic food... GOOD FOOD

... moved from a stuffy chemically saturated office where I sat for 5 years being an unwilling 'participant' in the goings-on in the toilet next door, e.g., morning sickness, food poisonings, complicated bowel movements, flushing toilets... to a window view of birds, monkeys and insects against a backdrop of lush tropical rainforest ... MORE FRESH AIR

... walking to work on jungle trails and breathing in all that fresh air ... AND EXERCISE

... sleeping soundly ... feeling happy ...

I reduced Neoral from 75mg a day to 50 mg a day, while maintaining Prednisone at 5mg a day. And still feeling great, I reduced to 25 mg a day after 2 weeks.

Still felt fine.

The problem started when, bouyed by the successful reductions, i.e., reduced dose with no relapse, I continued on this 'winning streak' and stopped taking the Pred altogether. I figured since I'd reduced from 6 pills to 5, then 4, then 3, then 2.. and then 1.. so logically.. the next reduction would mean 0 ... That was on 17 May 2004.

Big mistake.

I started feeling real tired all the time, difficult to get out of bed. My mouth broke out in ulcers and I was falling asleep at work. Then after 3 days of that fatigue, I developed an unquenchable thirst.

Not good. Yet I had hope. Courage gotten from all these improvements due to diet and lifestyle changes.

I must have drank 2 liters of water that day, but that thirst would not be slaked.

That evening my urine tested 1+ :(

The next morning, after a solid night's rest, I woke up feeling exhausted, but urine was negative. I wasn't hopeful that it would stay that way though, based on past experience.

It just got worse and by 22nd was 2+ so I have decided to bump up my dose to the max (60mg a day) from 23rd, with immediate taper 10 mg every day.

I feel okay at the moment, just resting as much as possible and eating as well as I can manage.

I got depressed. That awful sinking feeling that you get when you know you have gotten on that ride, and you are going down, and you cannot stop it... you cannot get off... I hate relapses. I hate them because they unravel all the good I have been trying to do for my body. I hate them because of that smirking smugness they get when they slap the symptoms, the dipstick results, in my face. It's almost as if they are a real, solid entity that I could throw a punch at.

But I can't.

I am forced to go back to those high high steroid doses. Knowing that I already have osteopenia makes it worse.

At least I know that I can taper down quickly now. That I can go from 6 to 5 to 4 to 3 in a matter of days, and then maintain on 3 for a few weeks, then 2 for another couple of weeks, then 1...

And from my recent reading binge trying to find the difference between hydrocortisone and prednisone, one good thing is that I am now more aware of the adrenal insufficiency that I probably have due to my adrenal glands being suppressed all these years.

So I should go from 1 to 3/4 to 1/2 to 1/4 then to 0 ... taking 1 month for each reduction...

Try again.

Till then, it's moon face grace.

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