Picks-at-Flies's Cystic Fibrosis Blog

I suffer from the genetic condition Cystic Fibrosis. I generally keep myself comparatively well with Western antibiotics (and steroids, and vitamins and...), Osteopathy (generally to tackle tightness on the lungs) and Acupuncture. Unfortunately I tend to lose track of how I was behaving this time last year so I have started this blog to help me keep track of things. You are also welcome to look. For more on Cystic Fibrosis see the CF Trust website http://www.cftrust.org.uk.

Articles: Chinese medicine, CF and Me :=: Another year on :=: Top ten ways of staying healthy
Reference: Description of herbs :=: List of herbs :=: About this blog


August 2006
July 2006
June 2006
May 2006
April 2006
March 2006
February 2006
January 2006

December 2005
November 2005
October 2005
September 2005
August 2005
July 2005
June 2005
May 2005
April 2005
March 2005
February 2005
January 2005

December 2004
November 2004
October 2004
September 2004
August 2004
July 2004
June 2004
May 2004
April 2004
March 2004


> pwcf.com
A "fan" site created by People With CF. Highly recommended.

> CF Trust
Official site for this excellent British charity. Includes extremely well populated forums - highly recommended.

> What is Cystic Fibrosis?
A pictorial guide to the key parts of CF and to living with it.

> Cystic Fibrosis Medicine
A somewhat thin internation site for CF patients and specialists.

Other blogs

> Breath of Life
Another CF blog, rather more complete than mine!

> Cystic Fibrosis and Me: A Personal Journey
(Clockwatcher sadly passed away 2006; the site seemed to follow him)

I seem to have lost my links to other CF blogs. If you want yours added, give me an email.

Visit the CF Trust

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Sat, Jul 23 2005
I am going to feel soooo silly

After quietly worrying about IVs all week, I had a brief respite on Thursday when I saw the Osteopath. He relaxed my diaphragm area so much that I went hypo* at work, hypo even with much reduced insulin at work and could do physio that found that there were only small bits of sputum coming up, even if it was a horrible colour.

So cue a change of herbs, no.9/anti-heat Thursday, nos. 9 & 11 (stubborn sputum combo) last night... but my diabetes quickly got worse again. I woke up at 6am this morning realising the problem - I had over-dried myself.

The worst thing is that the last time it happened was either this month or last. It explains the diabetes and I have a feeling it may also explain the colour of the sputum. It certainly explains the harsh unproductive cough. I don't know whether to be happy or sad.

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Tue, Jul 19 2005

Well it seems I made a small error in judgement. I thought that I did not have a sputum problem, but after going to the gym last night (without much strength) I spent most of this morning coughing up the most disgusting sputum from the bottom of my lungs - and sleeping.

Cause? I suspect that one or more out of the heat, no.10, Pinellia or the special just-cooling tincture caused my sputum to dry up and not move. It explains the increasing diabetes, digestion problems and even the bloated feeling I had. Nor is it the first time I have had this problem - which only goes to show how effective the gym is!

I don't know if this problem will recur since I am not sure of the exact conditions (weather and herbs) which sent me that way. Either way, hopefully I will hit the gym at least once more before heading off to Wales for my holiday.

Nor have I managed to solve the problem of how to get to bed early...

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Mon, Jul 18 2005
All moved!

We moved into the new house on Thursday, and the old one no longer feels like home. My new floors are wood laminate and already I am feeling the benefits of having less dust from them. All my medication, apart from insulin and Creon, is now kept in my room, and I am finding it even harder than usual to get round to doing my nebuliser. However, other than that the new arrangement suits me.

The biggest problem however has been the huge amounts of heat, which has crept into my lungs as phlegm heat. I saw my acupuncturist on Thursday who confirmed my diagnosis, but there is little I can do about it except to keep taking no.10 and hoping it doesn't creep into Fire Poison. I am also hoping that my increasing diabetes and bad digestion is related and is not a symptom of the looming infection.

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Tue, Jul 12 2005
Two days to lift off.

I am writing this just before I dismantle my computer. It won't be available again for at least two days... what am I going to do!

To add to the confusion, I spent much of the morning doing physio, and some of my sputum was dark green. Has the phlegm heat progressed to fire poison? Has the prolonged use of no.10 with much relaxation helped me bring up long buried sputum? Or is it some reaction to the heat? All I know is that before the move on Thursday I cannot afford to be ill. However, I did manage to get my acupuncture appointment moved to Thursday evening.

See you after the move.

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Fri, Jul 08 2005
Phlegm heat?

I woke up at 5am this morning, and thinking it was 7 went a-wandering. And on my travels, I realised that my constant, thick phlegm bore an uncanny resemblance to condition I have come across many times before, phlegm heat. Why had I not noticed? Partly because it crept up behind the dust, and also a large part of me didn't want to think about it. I am still not 100% confident, but I took some no.10 at 5 and then proceeded to sleep for 6 hours. My sputum is different, but not cured yet, but my fingers are crossed that I caught it in time before it turned into an infection. My low insulin (currently 13/13) indicates I have, but then I have been taking formulae which lower it.

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Mon, Jul 04 2005
A week of dust and mayhem

I haven't been able to do much this week. All the moving has stirred up countless dust, leaving me coughing on a regular basis. The herbs, nos 12 and 3, are doing a good job of keeping my sputum flowing, and stopping any heat forming in the excess, but don't seem to be able to stop it. Nor did increasing steroids, which only left me feeling incredibly tired.

The worst part in all of this is that it disturbs my sleep. No matter what time I get to bed, I never get more than seven hours sleep, and even that is disturbed so I don't get enough of the really deep sleep. Consequently I have been too tired to do much. This was not helped by worry over a friend, or by some of the heavy moving taking place. However, I will hoover the house tomorrow while I have energy, which will hopefully give a bit more temporary relief.

On a lighter note, not only do I have an excess of storage space in my new room (which no doubt will be acquired by the rest of the family), but I have managed to display two penguin mobile, a dragon puppet and a five foot cardboard penguin. Unfortunately the large mobile is currently hanging where my head will be when the computer is moved up there!

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Posted at:Wed, Aug 10 2005 9 PM