Please give me strength.....

[Jillymo]

I feel as if I am dealing with complete and utter idiots.

I have been waiting well over a year to be seen in gastrollogy. One of the consultants refered me back to my heamatologist and then knocked me off the wretched list ! I then had to go through the ordeal of being reinstated to be seen by a gastrologist. After yet another considerable wait this morning I received an appointment. Whoopee I thought untill I realised it was a phone consultation.

I thought I was going to blow a fuse I were that angry. 🤬 I have rang the gastro clinic insisting on a face to face appointment. They were going to ring me back but as yet not heard a word !

As some of you will already know a couple of months back I had an endoscopy - I posted the pics on here. My duodenum didn't look too good to say the least and I have a long standing sliding hiatus hernia. For some considerable time I have also suspected I have an epigastric hernia which occured in 2019. Despite my endlessly trying to get a diagnosis for the swelling in my abdomen my plea's fell on deaf ears despite looping of my bowel seen on x-ray. Still the swelling was not investigated.

I called my gp out last week because of numbness and bluing of my toes, the dr diagnosed raynauds. My Gp said he would do blood tests to check my uric acid and for raynauds.

The nurse has just been to take my blood - On her list was thyroid, calcium all of which were recently done. Guess what folate and yes you have guessed B12 were also being checked despite my being on injections for 3yrs !

I requested the nurse to clearly document I am on injections ! Once she had left I rang the surgery and asked why they were repeating unnecessary bloods ie thyroid and calcium and then asked why the surgery were not following guidelines with regard to the testing of B12 once on therapy ? ? ?

With regard to the swelling in my abdomen the Dr thinks I have an epigastric hernia ( surprise ). He is now after 4yrs of my suffering refering me for an ultrasound. I had said all along it was a rudy epigastric bl**dy hernia. 🤬

All I need now is for the silly asses ( and that is not what I really want to call them ) to join the dots scratch their stupid heads and ask themselves if this is why my folate and B12 were low and now in turmoil and now self injecting.

Its not rocket science. Grrrrr

Rant over.

[Nackapan]

Oh dear.So frustrating.

I'm in a round of more confrontations with new Gp surgery .

No strength to give you.

Deep breaths !!

Hope sorted soon.

A friend did suggest I 'snort ' lavender rather than put drops in😲 an aromatherapy diffuser 😂

[Jillymo in reply to Nackapan]

I was thinking more of sniffing weed. 😵‍💫

I am running out of surgerys - non seem to have a damned clue.

Deep breaths. 🧘

[pitney in reply to Jillymo]

I agree and its so frustrating, I can hardly walk this morning but apparently everything is fine😭

[Jillymo in reply to pitney]

Lets smoke wacky backy together and meditate. 🧘

It really makes you want to screaaaaaaam.

Sorry to hear your suffering too. 😘 💐☕🍫

[pitney in reply to Jillymo]

Much more of being dismissed and I shall consider taking up Witchcraft😀

[Nackapan in reply to Jillymo]

My last one closed !! So no choice but to find another.

NHS app wpied clean?

Took photo ID filled put a form and signed it.

Some bits reloaded but not all.

So went in person as no. 28 in thr queue on phone

Now someone else's info put on by a 'different ' company ' but apparently not the surgeries fault.

It's put I'm on the contraceptive pill.

Severe MH problems.

Refused advice / help to stop smoking

On meds for depression

Amongst other things.

Given another long form to fill out .

This very difficult for me . Visual pattern glare ect.

Asked for help .

Not allowed .

Went outside better in natural light .

Took it back and queried two pages .

WRONG form given .

I coukdn5 do the whole thing again.

Got assertive .

Asked to see the lead on this .

Check the 'right form'

And to use appropriate pages I had done already .

Told I didn't need to return it to her personally .

Back in

Receptionist embarrassed I'd been there sooo long.

Coukdnt check it !

So I did hand it back personally to the person that could.

Hoping it will right it's self now.

Can't be removed

Can have a footnote / ammendment

They don't know me.

( well might now)

Last thing to read on notes.. though at next consult.

So glad this woman on the contraceptive pill.

As jumps out as wrong on a post menopausal women's notes.

Well it should!!!

I only wanted to get it up and running again to see what the nurse i saw

recorded to see what I was up against .

She simply didn't believe I do sc b12 injections at home.

Even asked what needle I use

.Stating

" it's not done '

I replied please read my notes .

So bored with it all.

So much energy used.

Will persevere

Do not want doctors thinking.

Had loading doses now well and skipping down the road!

Has to be 'out there '

The needs of B12 patients

Can't inject me as a directve not in place.

Blah blah

I calmly pointed put there was.

One at last practice invalid now .

I need a review with a doctor.

Did the injection 💉 after all that and a bonus it didn't hurt.

One hour later fled from the surgery .

A week later tried to book a doctors appointment by phone.

Finally got through.

Told I didn't need a doctors appointment but one with a pharmacist as my prescription has been removed. An influx of over 5000

Patients needing a new Gp in the area .

More chaos .

Hoping my old chosen Gp employed in this 'new group / partnership of Gp surgeries.

Told all online soon.

Can't cope in this 'remote ' system.

People need people .

Did point out my mum can't hear on a phone .

Cannot use a computer .

Cannot use a mobile ( tried) many times.

So what happens to her in this new system. ??

Amongst all this .

My friends dad dying .

Can't praise the home palliative team enough .

Thank goodness.

My rant over!

[Jillymo in reply to Nackapan]

Dont know if this is new guidelines but not seen this one before.....

nhs.uk/conditions/vitamin-b...

[Cherylclaire Forum Support in reply to Jillymo]

Interesting to see that EOD injections to continue until experiencing some improvements.

Once it became apparent that I could not improve on routine injection frequency, I was given 2 a week (closest the nurses could do to EOD). It took three months before I even knew that my injection had been given, and I could roll down my sleeve without having to ask ! Was beginning to think that the reluctant, wary nurses weren't actually doing them, so little was happening for me.

Still, not exactly at a health level I'd have wanted to maintain even at that stage. Nevertheless, an improvement finally.

Wonder if the NHS have ever come across a vegetarian whose B12 deficiency is caused by PA - and not solely by diet ? Statistically, there must be some.

Making divisive decisions not easy.

[Cherylclaire Forum Support in reply to Nackapan]

Oh, dear. All so energy-sapping for you.

Glad to hear that the home palliative team doing well with your friend's dad. Needs respectful, compassionate nature, mental and emotional strength to carry out end-of-life care properly. Important to get right and one chance. ALL about the inner qualities of people.

Would hate to see NHS services going completely online - didn't improve banking, did it ? In access or security or fraud detection or elimination of human error. All now our problem.

Yet another flawed system being pushed onto us - as you have recently found out, several times, to your cost and to your mother's.

Wasn't the end of Covid lockdown our opportunity to create a brave new world ? Well, whatever happened to that ideal ?

My rant just beginning !

[Christine48]

Sorry you had to go through all this. Unfortunately it is a constant, draining battle to get anything to do with Pernicious Anaemia or B12 deficiency treated appropriately. Most GPS do not see it as a problem and do not seem aware of the serious damage it can do. Never give up fighting!

[Wwwdot]

Oh dear I find these posts so upsetting because getting basic care is so exhausting and unnecessarily difficult.

I too am getting tired of having to explain basic facts to medics so I am thinking of typing up a handout so I don’t have to use valuable energy repeating myself. I did this for my son when he was little and had Asperger’s Syndrome so I didn’t keep having to explain to teaching staff who had “done the course”!

I went to the GP yesterday and no problem getting 3 months supply of vitamin D which is low due to malabsorption but again no B12 - it doesn’t make any sense.

My self injecting every day was “noted” with the comment “your B12 was very low” as if the discovery of such was the finishing line! If only.

My ongoing gastric issues were also “noted“ but no active help provided. “Let us know how you get on” was the most I got (and I know I should be grateful for that!!!) as I left with my Vitamin D!

I am thinking of going for reflexology as there is an ex medical person who does it and is meant to be good Reflexology sorted my tennis elbow once so hoping it might help again with my gastric issues and PA. Certainly a better chance than relying on the NHS !!

Group hug everyone 🤗🤗🤗🤗 we will get through this

[Jillymo in reply to Wwwdot]

At least it was docummented your B12 was very low and therewas no objection to your self medicating - thats something I suppose. My gastric issues are endless but can I get to see a gastrologist - at this point in the game the answer is no.

I did all the remedial therapies many years ago. It was a bit of me time to be pampered albeit being costly.

The best therapy is a hug. 🤗

[Wwwdot in reply to Jillymo]

🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗

[Jillymo in reply to Wwwdot]

Your cuddles worked miracles.

After over a year of waiting and months of ranting and raving I have just received a gastrolgy appointment for the 14th of June !

Lets ditch the cuddles and party. 🥳 🎉 🥂

[Wwwdot in reply to Jillymo]

yay! There is a God!!! 🎉🎉🎉🎉🎉

[Jillymo in reply to Wwwdot]

Hallelujah sister my 🙏 have been answered.

Cheers. 🥂🍾 Hic 😂

[Nackapan in reply to Jillymo]

Good !!

[Jillymo in reply to Nackapan]

My concern now is the results of my B12 bloods the gp took without informing me and how he is going to react to them. 😱

I feel I am going to have to face yet another battle and need to prepare myself.

[pitney in reply to Jillymo]

Pleased for you, just hope he's better than the one I saw🌻

[Jillymo in reply to pitney]

I'm afraid not - only an imbacile would check my B12 after 3yrs of being on injections. What a 🍩