Pernicious Anaemia Society
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Just when you think it can't get worse, guess what?

Went to get my first injection in a month on Friday, after being on 2 a week since October 2016, so was in a bad way by then. Had a row with the nurse, when she told me that I needed to book the next one for 2 months' time with her- I refused and told her I was being undertreated, then stormed out. She's the head nurse by the way. Bad enough.

Then on Saturday, my partner of 25 years left me.

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I'm so sorry.

Sounds like two sets of lambs need thumping.

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I'm a Londoner -but still happen to have a farm just down the road. Might just pop over there later this afternoon......

Even the pictures I've just put into my head are making me feel guilty now. It's true: Vegetarians ARE wimps.

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Cherylcalire...I'm so sorry to hear this.

The first is easy...given your history, think it's now time you wrest control from your surgery and start to self-inject with B12 between surgery sanctioned jabs.

The second, not so easy. Can only begin to imagine how you must be feeling so...all I can really do is send you be kind to yourself words and lots of hugh hugs...

And as you liked it last time...more crossness on your behalf...just in case thats what you need right now 😖.

Keeping you in my thoughts ❤️ xx.

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Thanks, Foggyme, and I know you are right about SI. Too stubborn? ... moi?

I keep thinking that the haematologist emphatically stating that mood-swings, memory loss, cognitive problems etc were not related to my B12 deficiency (and therefore not likely to improve, quite the opposite in fact) probably was the final straw after a very difficult time : proving, if proof were only heeded, that I can't possibly continue on just 1 injection a month !

I'm seeing the GP on Friday hoping to get another certificate- will she notice my deterioration, -or be more likely to tell me off about shouting at her head nurse? Sadly, I think we already know the answer to that one.

Perspective prevents me giving a monkey's.

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(((X))))

J🍀💉

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Just remember that a little kindness for yourself wouldn't go amiss right now! Be as nice as you'd be to someone else, and know that you will get through this.

Take a friend along to the surgery with you? And think about SI - it's really very easy and it helps to take charge of something for yourself xx

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Thanks everyone,

I feel like I've been waiting years for help from experts and feeling disappointed/ abandoned/ angry for far too long- so long that SI then began to feel like giving up on an investment of time, energy, hope: wasted on the wrong people, none left for those I love.

SI feels like the only viable option left now, and I can see the freedom of controlling your own vitamin intake according to variable symptoms and changing needs- not administered doses controlled by generic guidelines and invalid testing, with the threat of further reductions or removal ever-present.

Maybe I will discuss SI with GP on Friday- tried once before and she said that she is aware that it happens because she reads about it on support forums (this one???) -which is a start.

Have to see the osteoporosis people today: had density test, then blood tests, now called back....we all know that can't be good.

- It's a week till my 59th birthday and I'm starting to feel like dust already !!

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Please don't :-( You are arriving at a very important age. I loved being 60 and the last 10 years have been fab. Not sure about the next 10/20 !! You have been dealt a double blow and I can empathise - my first marriage ended after 25 years - and you do often wonder what went wrong. Reading both the Thyroid UK forum and here I can see how lives are often challenged by chronic illness and how time consuming trying to be well can be. I can also see it in my own families ....

Are you aware of the connection with LOW B12 and osteoporosis ?

ncbi.nlm.nih.gov/pubmed/815...

drmyhill.co.uk/wiki/Osteopo...

The above Doc has an excellent protocol for bones :-) Hope it proves helpful.

Take good care and stay in touch ....

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Thanks Marz, for all of the above. I especially love it that you loved being 60 ! The picture of you above always makes me smile when I see it - you look so happy, healthy and like you've got a lot of fab years ahead of you. Lovely.

Have you heard of Satish Kumar (writer, among a lot of other things)? He said that everyone should go on a personal pilgrimage before they are 60 -and I've been thinking about that a bit lately.

I will look up the links above and take any info with me to this afternoon's appointment so thanks again for the kind mix of practical advice and caring- it's why I love this place so much.

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I will have to send the pic of me meeting Gianni Versace some 30 years ago - in my home-made dress made from gents suit lining material in gunmetal type taffeta type fabric - with my my 5.95 beads from Debenhams. I was at a Conference in London and meeting him was a last minute thing !

Had to prepare supper for the family whilst making the dress prior to flying to Marrakesh for a Conference. Cleared the table - threw it on the sofa and when I continued later I realised my Yorkie had left his calling card. Quick wash in the machine - ironed wet and off I went to the YSL Conference. No wonder I can overcome the challenges of Thyroid issues - and B12 :-) x

Will look up Satish Kumar :-) I did go to India after my Mum died and left me a little money - I went for Ayeurvedic treatment - amazing. You probably have read that I started teaching yoga at 65 - some 6 years ago :-) ..... and so life goes on in sunny Crete :-) x

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Heard Spring's the best time to be in Greece, although I once went to Crete at the end of October..for partner's 50th: the clocks went back and so we celebrated twice! Weather was lovely. Only a bit jealous - here, it's raining/ sleet/ thunder and lightning, although to be fair, it hasn't rained for ages and it is April, and my wisteria deserves more attention than I have been able to give it lately.

Found out yesterday that yes, I have osteoporosis -of the spine. Best start organising my personal pilgrimage soon then ! My sister, three years younger than me, just told me that she's off to Caistor on Friday (soul weekender), which has made me feel pretty ancient.

Would love to see that picture. YSL Conference- were you a designer, then, Marz ?

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Just picked up this message as you had not clicked the Green Reply Button beneath my post - so no alert 😊 Easily done !

No I was not a designer - I worked for Charles of the Ritz and Yves St Laurent - and later Versace was added .... I would have loved to have been a designer. My eldest daughter does Interiors for the rich and infamous ! I was Area Sales Manager for Ritz/YSL in the Midlands back in the 80's with all that hair !!

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Good for you as far as the nurse goes. I have found the best comment when they say things she did is RUBBISH. It works with nurses, doctors, consultants and in fact anyone, me included, and feels so very good, especially as you have the evidence to back it up. Remember, when it comes to you symptoms, you are the worlds leading and only expert, you are the only one who had to live with them, 24/7.

As for the other, well, there is nothing anyone can say. Best of luck with that. You can always have a rant on here.

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Hi kcbrecks , well here I am and everything has changed from 5 months ago.

I am now self-injecting; started last week - although a complete beginner and not always sure I know what I'm doing, am still quite relieved and hopeful. I just got very tired of not having any say in my own life and waiting for others to decide my fate. Meanwhile, I am doing no harm and cannot skew tests now that haematology have done with me.

Still waiting for the following:

Scan on groin to see if I have a hernia

SIBO breath test

MRI brain scan results

Genetics lab results

Picture of Marz meeting Gianni Versace !

....oh, yes, and best of all my partner is back !

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I will see what I cando re pic !! Will send it via PM so the whole of HU will not crash due to my lack of computer skills 😴

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