Author Topic: you've got to laugh  (Read 2286 times)

anna

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  • Posts: 32
  • Reason for joining: patient
  • Diagnosed: 2 years ago approx
you've got to laugh
« on: January 22, 2018, 06:59:18 pm »
You've got to laugh otherwise you would break down . Not only do I make my bed then promptly collapse on it for 20 mins I also look at the shower/bath and say Naaaaa maybe tomorrow . I look at the washing up on my good days and think in a minute makes no difference on bad days because theres nothing to wash up. When I do go out I where a scarf over my mouth like a Ninja and I don't care. And if you think your coming into my home if you have 1 drip coming from your nose well I cant say the words. I don't eat chocolate but I do now I  do eat rice pasta but I don't now .And the best thing off all is when I  do have a decaf coffee/tea i now take 1 sugar not 2 yipeeeeeee. AND  I OFFICIALLY LOVE ICE CREAM. Im cold tired feel sick aches and pains  back ache skin is a mess and if one more person says to me "Well at least you don't have Cancer" my family may have to bail me out .As far as I can see this is a deadly  unknown diseased and needs to be taken very seriously.  BUT ha Im alive and relatively happy and hopefully get better as I have lots to do. And I wish the same for you all   

Lesley

  • ***
  • Posts: 177
  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
Re: you've got to laugh
« Reply #1 on: January 24, 2018, 01:31:07 pm »
Anna

Your post brought a little smirk - I so know what you mean!
I could write a book with all the 'comments' about 'only' having Amyloid! And you're fine now!
Thank you for posting
x

nvroberts

  • **
  • Posts: 51
  • Reason for joining: I have AL amyloidosis and frecently started kidney dialysis
  • Diagnosed: November 2014
Re: you've got to laugh
« Reply #2 on: January 29, 2018, 09:11:35 am »
Been there, done that.  Thanks Anna, that cheers me up.

Just got woken up by my wife with a lovely cup of tea, because my renal nurse is due here any minute to take my regular monthly blood sample.  Bless him for that, it saves me a trip to Derby.  But I'll be straight back to bed when he has gone.

The appetite/taste buds thing is peculiar.  I used to enjoy whisky but rarely do now, and if I do it is usually American bourbon.  Probably just as well.  I used to enjoy foreign food - Moroccan, Asian, Lebanese, you name it.  But lately I prefer simple comfort food like cottage pie, egg and chips or just a bowl of soup.  Then again, I had a good day yesterday and cooked up a very nice chicken Balti saag. Yummy.

Keep on truckin'.

AnnR

  • ***
  • Posts: 126
  • Reason for joining: Recently diagnosed with cardiac amyloidosis
  • Diagnosed: April 2017
Re: you've got to laugh
« Reply #3 on: January 29, 2018, 07:21:38 pm »
The food thing is a real pain. I made a lemon drizzle cake for my Dad's birthday and it tasted revolting although everyone else liked it. Can't eat chicken, beef, toast and a hundred other things but cold samoln, gammon, scones and flapjack OK. It seems quite random. Everything crossed that the haematologist will say that I can stop chemo when I see her tomorrow and one of the things I am looking forward to most is doing some proper cooking and enjoying a full range of food again.

patpinchin

  • *****
  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
Re: you've got to laugh
« Reply #4 on: February 10, 2018, 09:53:10 pm »
My response to the all to frequent remark, « Well at least you haven’t got cancer, » I smile and say something along the lines.....

You are right there. Amyloidosis is as bad if not worse than many types of cancer but worst of all is that there is a significant number of amyloidosis patients who do not survive  beyond 6 months of a late diagnosis. The tragedy for amyloidosis is that as a rare disease it is not in many Drs’ diagnostic thinking. That means when amyloidosis patients  present to their Drs with a rather vague non specific set of symptoms, which relate to a number of other more common disease, amyloidosis is not a disease that Drs often think about. There are Drs who have never met an amyloidosis patient in their entire career so it is not unheard of for patients to take 2 years or longer before being referred to the one and only National Referral Centre for Amyloidosis in London where there is just a small team of  the ONLY specialist amyloidosis Drs in the country. There will not be any Dr in the U.K. who does not have cancer as one of the first three chronic incurable life threatening disease in mind. Amyloidosis is not usually even on the list. How about you giving an amyloidosis newsletter to your GP when you next see him/her and ask him/her to please read and pass to a colleague as your are trying to do just a bit to raise amyloidosis awareness among medical professionals? If you wouldn’t mind doing that please, it might save a life.

That usually does the trick.

As for loss of appetite and/or altered taste........ when you have had a relentless powerful  overwhelming salty taste in the mouth which worsens with talking and almost any activity for more than a decade, then anything which is other than bland is impossible to eat and it tastes even more salty to the extent that it makes me feel sick. I always loved highly spiced food and different cuisine from many different countries but anything with a very savoury taste is off the menu for me. I  never used to have a sweet tooth,  but since oral amyloidosis I have amyloid in all my salivary ducts which means that I don’t have a normal saliva flow to protect my teeth from decay so on the strict instructions of my dentist if I want to avoid continual restorations or worse still lose my teeth altogether, I have to avoid added sugar in foood and drink like the plague.

How I yearn for a piece of home made cake, a glass of wine or a few chocolates but I know the next time I go to the dentist he will spot a cavity. I have bad enough symptoms from my mouth misery without having to have extra dentistry!

I count my blessings I do have a caring loving family and sympathetic and empathetic Drs who all  understand. Without them I would have gone under many years ago.  :)



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« Last Edit: February 12, 2018, 09:45:15 am by patpinchin »
Pat