A new year. A time I always thought of as being a new start with everything to look forward to.
But with the this disease......My last post shows I had been told there was no evidence of haemolysing (AIHA). Mmmmmmm. However, destruction of red cells continues. Yes, haemolysing has not gone away. My Prednislone dose had got down to 5mg and the pattern of the past year is that once at this dose for a couple of weeks, the destruction of the red cells starts again, which is what has happened. I have had a bone marrow biopsy this week (not the most pleasant of procedures) and depending on the result and discussion with the rest of the hospital team, I will learn on 1st February if I am to have my spleen removed. This, it is hoped, will help with my red cells.
I am tired of living with CLL and I am depressed. Ten years is a long time to be ill. I would like to book a holiday in the sun and go away and relax for a couple of weeks. But I don't feel well enough to travel far and travel insurance is a nightmare at the best of times. Travel Insurance.....maybe another topic here.
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"The breeze at dawn has secrets to tell you.
Don't go back to sleep".....
Rumi Poem 'Across the Door Sill'
Thoughts from a CLL patient
Go with the flow. You can't stop the current, so enjoy yourself and don't let anything hold you back'.
Worry is like a rocking chair - it gives you something to do, but it doesn't get you anywhere.
'I think you go on dancing til the lights are turned out. Then you're dancing in the dark, and that's fine, until you come back into the light again'.
Joanna Lumley
Joanna Lumley
'You can't regret any minute of your life. You've just got to keep going'.
"The breeze at dawn has secrets to tell you.
Don't go back to sleep".....
Rumi Poem 'Across the Door Sill'
We turn not older with years, but newer everyday.
Emily Dickinson
Emily Dickinson
Who are you?
First you are you,
and then you are middle-aged,
then you are old,
then you are wonderful!
Lady Diana Cooper
and then you are middle-aged,
then you are old,
then you are wonderful!
Lady Diana Cooper
How to LIVE
Life should not be a journey to the grave with the intention of arriving safely in an attractive and well-preserved body, but rather to skid in > sideways, Chardonnay in one hand, body thoroughly used up,> totally worn out and screaming:
'WOO HOO....what a ride!'.......
anon
'WOO HOO....what a ride!'.......
anon
Words to Meditate on
Panic is a projection that is not real. We are not just our fears. Our fears to not necessarily determine our future. This is significant.....Greg Anderson
Keep dreams alive for when they die, life is a bird with a broken wing. It cannot fly......unknown
I am too busy trying not to die that I forget how to live...unknown
What the caterpillar calls the end of the world, the Master calls a butterfly....Richard Bach
Keep dreams alive for when they die, life is a bird with a broken wing. It cannot fly......unknown
I am too busy trying not to die that I forget how to live...unknown
What the caterpillar calls the end of the world, the Master calls a butterfly....Richard Bach
Begining of a New Day
This is the beginning of a new day.
God has given me this day to use as I will.
I can waste it or grow in its light
and be of service to others.
But what I do with this day is important
because I have exchanged a day of my life for it.
When tomorrow comes
today will be gone for ever. I hope I will not regret
the price I paid for it.
author unknown
God has given me this day to use as I will.
I can waste it or grow in its light
and be of service to others.
But what I do with this day is important
because I have exchanged a day of my life for it.
When tomorrow comes
today will be gone for ever. I hope I will not regret
the price I paid for it.
author unknown
Followers
About Me
- soapy
- I want to stay anonymous and use my blog as a way of releasing feelings and also sharing with others.
2 comments:
What we all need is a vacation from CLL. The auto-immune complications are particularly annoying
I have had no trouble with pretty cheap travel insurance covering prior conditions as long as you follow their rules
Stay strong. We are in in this together
Brian, 58 yr family doc & father of 4, dx 9/05 del 11q unmutated, CD38+, ITP 9/06 failed steroids, IVIG , Rituxan and splenectomy controlled w cyclosporin A & Rituxan combo. RIC MUD HSCT July 1/08 was CR w BMB MRD neg. - lost graft w growing nodes at 6 months 2.8% BM involvement and ITP again at 13 months, controlled w IVIG see http://bkoffman.blogspot.com/
Yes we do need that holiday. However, having had previous heart disease as well as CLL and AIHA and 3 hospital stays from Sept to Nov 2009, my chances of being covered for CLL is very slim. In the UK we do not usually have private insurance unless provided by our employers. With the NHS luckily enough we don't usually need it. So I can travel within the UK but there is no sun at the moment :-)
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