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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Thu, May 27 2004
Acupunture - a new tincture

I have not sent off a script for DNase, everything seems to be moving well without it. Although I feel I have some old sputum in the back of my lungs, the acupuncturist focussed once more on my spleen. The new tincture - no. 7 - is the first proper spleen tonic I have taken: all the other tonics have focussed on the lungs. I think it has been having an effect because since I started taking it my I have been both feeling more bouncy and bringing up lose rubbish. Indeed, I managed to survive 5 late nights on a trot (this is my 6th!) although I will need proper sleep soon.

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Fri, May 14 2004
Osteopath fiddling

A slightly short session since I was late. He confirmed that it was my scapula muscles (or similar) - that pass down the neck and onto the back - which were tight. It is still a defensive reaction to the port. It is interesting to trace the movement of my scar across the chest as it changes shape and location.

The rest of my lungs are on good form, but my sputum is thick so I think I shall order the DNase on Monday.

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Tue, May 11 2004

My lung function is up, but not a lot. Blood pressure is normal. I am bringing up some really yucky stuff. It is unlikely to be an infection, since I have just finished a course of oral antibiotics (this ended yesterday), but it is hay fever season, my lungs are tight and the port is still causing wierdness/irritation. I also stopped DNase on Sunday, which might or might not be having an effect. Prescription: keep an eye on things, hold extra steroids in reserve (again) and I have a script of DNase on hand in case I need it.

On other matters, my shoulder (actually my upper ribs on my back) are killing me. Not used to this kind of steady pain I chose to cancel my osteopath appt. on Friday since it was too close to the acupuncture. Silly me. I has the physios look at it (grudgingly!) and they gave me some exercises and were quite damning about computer use. I have also found aspirin works a treat. Osteopath on Friday.

Also did a few blood sugar tests and... I am not doing as well as I thought I was. (I had to fend off a hypo as I walked home yesterday, which I thought was a sign of decreases insuling dependency; apparently not.)

(test line)

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Thu, May 06 2004
Central Chi

The acupuncturist commented on my lots-in-lots-out digestion, high insulin-dependency (currently on 20 units morning and evening), slight lack of energy and little coughs. He diagnosed it as spleen deficiency, also known as lack of central chi.

I felt so much better after treatment that I walked back to the library to write essay. He seems to have given me my bounce back (or at least some of it). Prescription: take Prosperous Farmer (spleen tonic) and a bit of Lucid Channel (spleen tonic with lung).

Also had a port flush. Went well, and next time will be practice for a ward nurse - the new CF unit in Bristol looks very promising and they are empowering the nurses it seems.

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Mon, May 03 2004
Blood pressure results

Some typical results are:

  • Morning - 120/80, 90/60
  • Midday - 112/76
  • Evening - 110/60

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Posted at:Mon, Jul 04 2005 11 PM