Difficult times

Don’t really know where to start.  I have been suffering with my pseudamonus infection quite badly recently and had numerous courses of antibiotics and I can honestly say I really think they are not doing what they are supposed to do.  Whilst on them I can cope but when the course finishes I seem to go down hill quite quickly and start to cough up blood and the amount of sputum increases.  I need to get this sorted as my father in law died last week suddenly so I want to be able to support my husband at the funeral which will be held in Norfolk.  We are not sure when the funeral will be as there has to be an autopsy.  It is so frustrating that sometimes I want to scream.  The amount of times I have told doctors (consultants and GP’s) that I have felt unwell and they have given me courses of antibiotics after a fight.  Brompton wanted me to have 750 mg of Ciprofloxin twice a day for 2 weeks I was only given that last week a month after the sputum test was done.  I am now on week 2 and I don’t feel much different.  I have had an x ray which apparently shows a significant infection and just told to continue the antibiotics.  When you feel ill it can be so draining dealing with everything.  I also have had to chase up my prescription for my inhaled anti fungal today and the company that is supposed to deliver it don’t appear to be on the ball.  I can say I have got used to it but I have run out now and awaiting a delivery.  The prescription was received my them last week and I was told today that someone has to sign off on it before it can be dispensed!  Hopefully I will get it tomorrow.  I suppose these things are sent to try us.

On a more positive note I managed to get to the Salisbury Christmas Market and meet up with Sandra and her husband with lovely Toby.  It was fantastic.  Hubby bought me a few goodies and we had a lovely meal afterwards.  Salisbury was beautiful all lit up with festive music playing.  Karen wasn’t able to make it as she had a dodgy tummy so instead of 6 there was 4.  You were missed Karen and Chris.

Yesterday my brother’s son and partner met us for lunch and we sat in a nice little restaurant by the river in Eton.  I consider myself very lucky that they spare the time to visit me.  Duncan has a very stressful job working for the National Crime Agency and travels the world for work so sparing time means the world.  Giving someone your time is the most wonderful gift.  Fionnuala works for a publishing house so I am always okay for books.  She was telling us about the new ideas for audio books.

Another card order posted today probably the last one this year and I am trying to take things easy so I can support my hubby when needed.

Hope everyone is okay – love and hugs x

4 thoughts on “Difficult times

  1. I hope things improve for you soon Jill. It is becoming increasingly clear to me that one of the non-medical difficulties faced by people with chronic illness is the sheer amount of chasing and organising that has to be done. If anyone has any tips about how to cope with it all that we can pass on please let us know on admin@aspergillus.org.uk

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    1. Thanks Graham. My problem seems to be that both Healthcare at Home and the GP wanted something in writing not via email or the like. On top of that you are then waiting for the letter/fax to be scanned onto your notes. In the GP it looks like it took over a week to get a letter from the hospital another week to scan the item onto my file and then it wasn’t until I went back to them to say I felt no better that the doctor saw the letter from Brompton. I can’t see a solution until things are accepted electronically.

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  2. Oh I’m so sorry to read how poorly you have been. It’s like antibiotics is a dirty word and getting them is a nightmare. To have different types them cipro and going down hill quickly after them I just wonder if certain people should be on them continually.
    I’m very aware of MRSA and c dif but if the antibiotics aren’t working I really wish they’d listen to us.
    Doxycyline seems to be the one I’m always put in and radiology doesn’t pick up pneumonia last October but resp consultant did.
    I am sorry about the pushing to get your medication delivered. You’re having a bad time but lovely to read you got to the market and met friends.
    I hope you get the most appropriate antibiotic moxifloxacin was a good one which I got with pneumonia x 2 lots.
    You are such a great member who I have learned a lot from several of you.
    My best wishes, gentlest of hugs and hope you get a result from the ciprofloxacin.
    Very best wishes and hope you get some positive help soon. Xx

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    1. Thanks Sally. I take antibiotics all the time but recently I have producing so much sputum and it has been streaked with blood. I feel if this dosen’t work it will be I.V antibiotics which is a bit of a bind but needs must. I have another week to go so fingers crossed it still might work. Look after yourself and I hope you start to feel better soon. ss

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