Fibromyalgia Action UK
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Follow up to >>>More tests, feeling more like a guinea pig every day


I have written before about my exhaustive list of health battles I have had to fight over the past 25+ years, so many surgeries, so many medications, specialists, diagnosticians, researching for hours on end, I can't even tell you how many times I have heard "That's odd. I have never heard of that before!" I've been accused of malingering. [for attention I imagine] been told "It's all in your head." and referred to psychiatrists....makes me want to scream or grab someone by the shoulders and shake them so hard their eyeballs pop out!

I never wanted to become an addict. But I am one, under a Dr's care but addicted none-the-less [opioids]

I know I wrote about having ascites [fluid around abdominal cavity] and have had a procedure done to syphon the fluid off/out.

[ Paracentesis is a form of body fluid sampling procedure, generally referring to peritoneocentesis (also called laparocentesis) in which the peritoneal cavity is punctured by a needle to sample/drain peritoneal fluid.

After that test I went in to hospital and had an upper endoscopy to check the esophagus, stomach and duodenum. 5 different tissue samples were taken for biopsy. Then we had to sit back and wait for the results.

tick-tock, tick-tock, tick-tock, do you really hate to wait as much as I do? Over the years I have trained myself to "Let it go" worrying doesn't change the findings/outcome.

The results are in. No cancer. Excellent. As I am a cancer survivor [2004]. Inflammation in stomach [we already knew that. Fungus in the esophagus. FUNGUS?? Yes, but now we know there is a reason for that. There is??

There is.

It's called end-stage cirrhosis of the liver. You should google it. I haven't decided what I want to do, or how to proceed. So, for right now I am going to breakfast with my best friend.

I'll follow up this follow up later


8 Replies

My goodness, that is a diagnosis that needs a lot of thinking about. I am sorry to hear it and sorry too that it was not discovered sooner.

It is truly a difficult time and I wish you hope and peace.



Hello Cape_Cod_Sharon ,

Like bluebell99 , I wish you hope and peace.

I admire your stoicism and spirit of resilience.

Bless you xx


So sorry to hear the results of all hour tests. I can imagine you are really conflicted in what you want to do next. My thoughts are with you, please let us know what you decide.x

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Sharon,my thoughts are with you. And as bluebell has wished for you hope and peace so do I. Chris x

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Good evening,

It's 11:30 PM. I took the day to ponder, discuss and ask all the "what if's" that came to mind. A big part of me wants to just throw caution to the wind and let whatever happens happen. Let nature take it's course, with no medical/surgical intervention.

It would be an easier decision if I had no wonderful children and beautiful grandchildren to keep me here...but I do. Levi [22 months] and Lily [4 months] haven't had the chance to know their totally awesome Grammy. And all I have wanted since the days they were born is to love, cuddle, snuggle and teach them about life. To feel my grandson's arms tight around my neck when he kisses me goodnight. To snuggle little Lily and inhale that intoxicating clean baby smell. To fall asleep with Levi tucked under my arm, we were supposed to be watching "Finding Dory"....

Life expectancy with end-stage cirrhosis of the liver is less than 5 years, Does that give me enough time to leave a lasting impression? To teach them important life lessons like 'look both ways before you cross the street' and 'don't be a bully'. Who will teach them about the constellations? And take them down to the beach to view a late night/early morning meteor shower?

My other grandchild [my first] is Emily Elizabeth. She just celebrated her 13th birthday. She is beautiful and witty and intense. She has my wicked sarcastic sense of humor and she is very funny, she loves her family and her cats.

Emmy took 4 years deciding what she should call me. One day at breakfast she made an announcement "I've decided what to call you!" I smiled "Really? And what is that?" She looked me square in the eye and said "Old Gram Gram" "OLD? I'm only 50 years old, what are you going to call me when I'm 90?"

"Dead" she said.

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Sharon do you keep a journal? I ask because you write so are able to put your thoughts across with impact but without sound like a strong woman I hope I could be half as strong if faced with what you are about to go through. I thought maybe you could keep a journal for all the grand children...write about your life your loves the problems you've faced and how you've overcome them. Diagrams of constellations pictures you've taken as well as one from the net, try and write what you would tell them as they they will always know what Gran thought or would do in's a big task especially with fibro hands but I think it would be worth it. I hope I haven't spoken out of turn but I wish you peace and hope and the strength to fight.

Alison 😊 xx


Dear Alison,

What an excellent suggestion. I think I had already started without a reason 'why'. I write everything down. I make lists and leave notes to remind me that I made a list then run out the door and leave my list behind.

I have saved every greeting/birthday/holiday card I've received since the 1970's

And I have my sister Nancy who I most lovingly refer to as Miss Information. She has such a sharp memory, I can always rely on her to fill in the blanks. I have 'missing time' that is just lost to me, I thank Lyme disease for that, it has robbed me of so very much. [I think that is why I write everything down] and I worry about things like Alzheimer's or dementia also being a part of my future. I already suffer from confusion and little lost bits of time.

Thank you for your thoughts, I truly do appreciate your kind words.


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Hi there, so sorry to hear that , I'm sure that you will make the right decision for you after a lot of thought , good luck and take care


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