Ping – a poem

Ping went the strings

On the canopy of everything.

By Samantha “unextraordinarybint” Harris

Tuberculosis is at Lowest Levels.

Detected.

request for sputum test
sputum test request showing to exclude TB in fifty year old female within a national health system

Most British people in their fifties were vaccinated against Tuberculosis at school.

I was one of those that queued up and got my TB shot.

But how long does it last?

This was the advice researched and copied on 24th July 2021 from London, UK.

Independent advice from the Guardian newspaper.

TB vaccine BCG effective for twice as long as previously thought.
https://www.theguardian.com/science/2017/aug/31/tb-vaccine-bcg…
31/08/2017 · Benefits of world’s only vaccine against tuberculosis were underestimated as new findings reveal it protects against the disease for at least 20 years.

American Advicewhich is slightly worrying tbh, as a Brit who’s had it.

Vaccines | Basic TB Facts | TB | CDC
https://www.cdc.gov/tb/topic/basics/vaccines.htm
TB Vaccine (BCG) Bacille Calmette-Guérin (BCG) is a vaccine for tuberculosis (TB) disease. This vaccine is not widely used in the United States, but it is often given to infants and small children in other countries where TB is common. BCG does not always protect people from getting TB.

United Kingdom of British Isles AdviceWe have a National Health System.

BCG tuberculosis (TB) vaccine overview – NHS
https://www.nhs.uk/conditions/vaccinations/bcg-tuberculosis-tb-vaccine
It’s less effective in preventing TB that affects the lungs, which is the more common type of TB in adults. Read the patient information leaflet for BCG AJV vaccine (PDF, 272kb) Read the answers to common questions about the BCG TB vaccine. Side effects of the BCG vaccine. Reactions to the BCG vaccine are uncommon and generally mild.

https://www.nhs.uk/conditions/vaccinations/bcg-tb-vaccine-questions-answers
The BCG vaccine contains a weakened strain of TB bacteria, which builds up immunity and encourages the body to fight TB if infected with it, without causing the disease itself. The BCG vaccination is thought to protect up to 80% of people against the most severe forms of TB for at least 15 years, perhaps even up to 60 years.

So why aren’t our NHS testing people with shadows on their lungs for TB??? I know this because I am one of the people who has been in contact with someone who has TB. I went on to have symptoms and diagnosed as COPD, but I’ve never had my sputum tested for tuberculosis because I had a vaccine thirty five years ago.

This worries me. I’m definitely not a doctor but it does interest me because it’s weird.

Just before covid19 hit our countries TB was starting to hit the headlines with a huge transmission in Wales killing at least one person.

A person has died following a tuberculosis (TB) outbreak in a Welsh village.

A further 80 people in the Llwynhendy area of Llanelli, Carmarthenshire, may have also come in contact with the disease and have been told to attend screenings for the condition in June.

And there was this…the first person to get corona virus 2019 was a Welsh teacher.

Connor Reed, 25, caught the strain while teaching English at a foreign language in a school in Wuhan – the epicenter of the outbreak – at the end of November 2019. As stated by the Evening Standard in May 2020.

This all adds up to some questions for me…What about you?

For those of you who are unfamiliar with the geography of the United Kingdom, it includes Wales.

So, Still Nothing. TVT mesh saga.

Through frustration and tears I write but couldn’t feel less like writing.

Sounds coming from outside remind me of lives being lived to the fullest whilst I painfully pace the length of the flat to stop my muscles from wasting completely.

In April 2020 the health minister kindly apologised to Polypropylene mesh implant sufferers and promised our care would change. For some people, it has. They’ve been referred to removal clinics and have made a recovery.

Unfortunately, some of us, are falling through NHS guidelines and our GPs seem unable to get us on the correct pathway for treatment. It has now been three years since my implanting surgeon recommended my implanted TVT be removed.

In the past year my dedicated GP has referred me out and seen me returned back to her by three Gynae consultants. I’m so grateful that she continues to understand my concerns and push for me.

I suppose, like any bad conservation job, it’s difficult to find someone afterwards to sort out a satisfactory outcome. The hold up is simply put. There is a shortage of surgeons to remove the mesh.

I’m tired of being in pain. I’m tired of being tired. I’m bored at a level no one understands. I’m frustrated beyond what I thought was possible and I see no end.

What do I see? I see a future of dealing with it.

And, I am starting, just starting to do it.

Before, I was clinging on to recovery and getting my life back again. I’m realising and adapting in my mind to the real fact that I am going to be stuck like this; sat accessorized in adult nappies, lording it around trying to look hot in a wheelchair.

Tears sting my eyes when I say I didn’t deserve this. But, none of us did. The guy who came to the hospital to get his hernia repair, the woman who got her bladder fixed or myself who got the TVT mesh implanted during a necessary hysterectomy, none of us deserves what’s happened.

Of course, in this life no one promised me a life without pain. One isn’t born feeling fantastic. In fact it’s the complete opposite isn’t it? From our first tooth cutting into tender baby gums to our last poop being forced out of a dry arse; life is full of pain.

It’s different when the pain is not experienced by everyone. I’m obviously conflicted on this as essentially, no one promised me life would not have pain.

I suppose I’m saying I need to start getting out, using the wheelchair if I need to, and living my life again regardless of the TVT. There is zero point in waiting for removal as the health services have more important people to deal with.

So, it’s still me and my TVT.

Thanks for reading.

Comfortable Pants

In England we have ‘pants’.

These are our undergarments. Affectionately called knickers or grots these slips of material with elastic cover our private parts, and clean ones must be worn daily for good health.

Pants must not be confused with the American term for trousers.

This is about comfy pants for females. I suspect men need comfy undergarments too but I’m not in a position to talk on their behalf so I’ll just deal with fanny coverings…and again, fanny in the united kingdom means vagina and only the vagina. (Unless you have an Aunt called Fanny the root of many a joke here in England.)

Without getting into too much detail females have more down in the lower abdomen than males.

Men have guts and bladders. Women have guts, bladder, womb, fallopian tubes, ovaries and cervix all crammed in the same size space.

As with all things in life, once it’s out of the box, it harder to get it back in.

Meaning…

After childbirth the womb has expanded…the area is larger. Fitting back into the garments she wore before children isn’t always an option. In fact, let’s be honest, it’s rarely an option.

As I get older I find comfortable pants are missing from my drawers completely. It is a constant grind that every pair of pants I own have been cut like those shown in the photo accompanying.

Excuse me, I own ‘special’ pairs for my lover. You know, lovely sexy articles to stimulate our carnal juices but I’m not talking about these that are barely on for half an hour.

It’s my ‘day to day’ pants. My ‘bread and butter’ pants. These are the pants that I hope I don’t get knocked over and taken into hospital with. What would the nurses and doctors say?

Anyhow, I’m going to leave this here today in the hope that some undergarment manufacturer hears my moan and does something about it. Please stop putting such a tiny waist into big knickers. If you are making big knickers…who are you making them for?

We have a saying in England,

“Put your big pants on and deal with it.”

Bet you never imagine our big pants would actually look like this.

Have a nice day.

I Have A Sty (hordeolum) – babble

I don’t know what it’s called where you live but, here in the United Kingdom, a ‘sty’ is the name for an eye lid pimple brought on by stress. It starts small, ‘kinda prickly and ends up as a swollen, crusty mess that makes it hard to blink and see properly.

All one can do is manage stress, not cure it.

Could I list my stresses? Probably. The question is, would anyone want to read them…?

I’m being coy as I know what’s done it.

Two weeks ago I submitted a book to a literary agent to ask if they’d consider me. It’s 47k words long and much is riding on it being positively received.

Naively I thought I could submit a book then ‘get on with the next’. Now this mistake seems massive. I can barely concentrate on anything. My head is everywhere negative.

What if I can’t write? What if my ideas are rubbish or they hate the concepts? Doubts continue to bug me along many different paths of thinking. I purged my wp account in case they looked…but what would they be looking for? Will they see me or be coloured by what they read here? Will they find the right Samantha Harris as there are so many of us?

AGGGHHH it’s all too much…hence the eye.

I’m wandering around the flat doing the most stupid things…procastinating for sure, is one of them.

Astragalus root has bizarrely worked to take the sting out of the sty. Initially I was drinking the self prepared astragalus root tea for my chest pain (long story). The small white used roots looked like they could be soothing. Why not take a wild stab at it? I did nothing more than swipe the root gently but directly onto my sore eye lid and it eased.

So, I’ll keep the used roots to keep the inflammation down until the infection goes and I’ve made chamomile tea too in a bid to relax this afternoon. Apparently, it could be twelve weeks before the agent gets back to me with some sort of reply about my book.

TWELVE WEEKS !!!!

I’ll have no eyelids left by then and will need more tea.

Should I warn kids not to mess with herbs? Ah, they’ll be alright.

Thanks for reading.

Blimey. Looks like I’m stuck with the TVT mesh.

The last few months have been hard. As hard as the last few years? Maybe not. Probably because my expectation level has dropped to 0.01 above zero.

Those that read my blog will know I had a vaginal polypropylene mesh tape implanted in me during a hysterectomy for Endometriosis. I thought it was, and I was told, it was, an inert material designed to hold my bladder up like a sling which would help with the stress incontinence they said I had.

When I woke up from the surgery in 2005 I felt an intense painful tension across my pubis…which I still have. It feels like I need a wee urgently and feels like something is cutting into me.

It feels like cystitis. I moaned about it since..the implanting surgeon gave me medication to ‘relax’ my bladder…as all they could find in my wee samples was blood, just a small amount.

The medication didn’t work and so ensued a fifteen year investigation as to the cause of this blood, pain and urgency. My GP referring me here there and everywhere to try and find the cause. Me becoming sicker and sicker.

I’ve done tons of physio. I’ve done diet restriction, addition and subtraction. I kept a food diary for two years. I kept an activity diary. I analysed every part of my life….and changed it. Including my work – several times – as everything I did seemed to irritate my groin. I did this for years. I eventually became exceptionally ill and was put on an NHS palliative care program.

My daughter got involved, together, through research we found that the TVT mesh that I’d had implanted in 2005 had left women with the symptoms I was complaining of. But, the kicker was, the longer it was left in situ the harder, almost impossible, it was to remove.

It was not designed to be moved.

It was designed to cause a ‘healing’ response from the surrounding tissue and build a tissue mass within my pelvic cavity. It was this mass which would then, in theory, hold the bladder in place. The TVT mesh’s rough edges were designed to irritate and cause the foreign body reaction which hurts us.

So, my lawyer contacted me yesterday to say until I have a doctor who admits my pain is caused by the TVT I have no case. Fifteen years of investigations and lies amount to nothing but exactly what they are.

I think the cost should be counted. I’m sat at home, on full disability, I’m 52 years old.

I was working full time. I’d retrained to become an electrician to be more physical and left modelling behind – I could no longer stand up in the shoes and it got me no where. Nothing worked.

I don’t complain about not being able to walk as I do have Ehlers Danlos but is this is being used as an excuse not to treat me? I got referred by my implanting surgeon for ‘consideration of removal of TVT’ in 2018 after I presented him with evidence of my continued ignored symptoms since 2005.

I’m no closer to removal now than I was in 2018. Further away really, as the removal specialist to which I was referred left the NHS soon after I saw her in Oxford 2019 (with my evidence) and then the hospital discharged me last month as they said they don’t have funds for TVT removal.

I was hoping to get somewhere with lawyers to go private as I know the government is refunding women who have done this. It seems discriminatory that us poor people reliant on the NHS are being pushed to the back of the queue and, as it appears in my case at least, still ignored.

So, no pay out. No removal as yet…Having been discharged from Oxford I’m not even with a consultant gynaecologist. It looks like I’ll be holding on to this torture device for a while longer.

Yeah, I know Matt Hancock apologised to all of us but he just says the right thing for the camera.

Thanks for reading.

On a good note I did submit my first book to a literary agent. At least I can think straight again.

The Problem with Shagging Sheep.

Comments on the medical device TVT mesh.

There is some talk of TVT mesh implants and how they have ruined women’s lives around the globe, but not enough, in my opinion, as it’s a scandal.

It’s development is interesting. The TVT’s inventor piloted the initial study on sheep. Unfortunately, the gentleman died but his work was continued…He worked for Johnson & Johnson. They recognised the monetary value in a product which would cause problems for life…and also supply Tena lady.

TVT is a questionable treatment for an ‘out of control’ bladder after childbirth and it was promoted as ‘the gold standard solution’.

It was designed to be implanted for life. Essentially it is a long tape placed around the bladder. It replaced existing operations and saved an hour in theatre.

It’s made from polypropylene plastic mesh – the same material the marine life have problems with.

The TVT is wrapped, blindly with needles, around the outside of the vagina, under the bladder and through the pelvic bone – if you are lucky the surgeons will miss your skene gland, rectum and clitoris.

It ought to be mentioned, originally it was designed for ‘awake’ patients so the tension could be adjusted.

I want to go back to the pilot though. I’m assuming that they used the TVT mesh on sheep who’d previously given birth AND who accidentally wet themselves. I pity the research student whose job it was to find suitable candidates for study.

How many days were really spent finding pissy sheep?

A problem with TVT mesh, is as the plastic gets older it shrinks. It can make penetrative sex difficult/impossible and generally it causes severe pain as your other organs move against it.

How did they research the sexual element with sheep? Assuming they bothered.

And then, how would the researchers extrapolate the data? I’m thinking all the comforting cups of tea in China will not get a sheep talking. And, were the sheep checked afterwards to see if they were still dribbling? Did they put smelling salts under their noses to induce a sneeze?

There is also the bipedal thing…I know it’s small but surely an important factor?

How could they check if the sheep could lift something? A sheep has never worked in it’s life.

Whatever, I await removal.

Thanks for reading.

Edited to add cartoon and to say coincidence or not (day after I posted this piece) the media have covered many personal stories as news regarding mesh implants. But they are muddying the waters by suggesting these implants are biological. They are not all mesh is synthetic or synthetic based polypropylene. Also,, there is some suggestion that the implants have just not been fitted correctly…no, it is more than that so all these pieces people are being fed in the media have been bent out of shape to stop the blame falling at the medical devices doorstep – where it firmly belongs.

 

Hard

Is that Samantha Harris?

Yes.

I’m the consultant who took over your case last year.

Oh, hello.

Sorry, it’s taken so long to get back to you.

‘pleasantries’

Bombshell

The hospital can no longer perform the surgery to remove the TVT mesh. We were unable to secure funding.

Yes, we do have the expertise to remove TVT mesh by laparoscopy.

No, the clinic which has been funded doesn’t have the expertise.

I’m sorry Ms Harris.

Yes, I will write to your GP who will need to refer you to the removal clinic.

Bye.

Thank you Doctor. Bye.

Summing up as I can’t write about this. It hurts too much.

Lab Rat Age – Lockdown Poem

Isolating for covid nineteen

All social distancing

It’s now twenty twenty-one

Another lock down has begun

Pfizer, Astra Zeneca and J & J

Motivated with shares and graphs

They wipe us away

Like fleas on an arse

Looking back to where to begin

I came across the story of Aspirin

Linked to Spanish Flu, who knew?

Pharma have us by the balls

Wanting funding for a new cause

Just how many more variants

Can really be found

In residents isolating, gone to ground?

We’ve vaccinated millions

Yet death figures soar

It takes no super sleuth

To unlock the cage

On Britain’s new,

Lab Rat Age.

The end.

Thanks for reading

copyright Samantha Harris (unextraordinarybint) January 2021

No Better – Review Stapled Hemorrhoidopexy. Honest/Blunt.

A week ago I had my appointment at NHS colorectal specialist regarding my butt pain.

This is now the third hospital I’ve been seen for looking into this. I wish they’d share medical records… I’m reminded of how, last decade, I used to go from hospital to hospital over the bladder pain. Then I read an article which told me it could be the TVT polypropylene mesh.

I read through the doctors letters that I had and saw that it was being mentioned as okay when I wasn’t really aware that this was what they were looking at.

Each consultant said the same thing “no erosion of the TVT”. I know now that there is no possible way they could have seen this by these investigations and each one of them lied.

Taking you back to 2005 when I had an Hysterectomy for Endometriosis because of night sweats and crippling pain. I was discharged from the ward six days after my surgery without clearing my bowels. I was re-admitted five days later having still not cleared my bowels.

Four years after that I am having a Stapled Hemorrhoidopexy, which I am unaware is a new procedure. The story of getting to that point is a whole book of horrors for another day.

I wake after the Stapled Hemorrhoidopexy in what the medical profession disgustingly call “exquisite pain”. That is not the correct term. The correct term would be horrific pain that will never be forgotten, worse than child birth. I woke screaming like a banshee. There was nothing exquisite about it. Sick sacks.

If you look up Stapled Hemorrhoidopexy, the gumph will tell you it is a painless, minimal invasive procedure and that you will be back to work the next day. It is not true. Far from it. This is a cut and shunt that you will be lucky to be standing up comfortably the next week, let alone the next day.

It definitely doesn’t suit everyone and if you have Ehlers Danlos like myself I would recommend not having it and demanding the older technique with biological material and a gentle hand. A huge mechanical stapler being shoved up your arse is not easy to recover from.

I have not yet found out what they used to fix the cut, the surgeon told me it was a ‘composite ring’. I am in the process of getting my medical records because of the TVT Mesh case I am trying to bring against the NHS, I am trying to find what this ‘composite ring’ is made of…because of my butt pain whilst I’m there.

It’s been eleven years since I had the Stapled Hemroidplexy to correct my evacuation problems. It didn’t work. It never worked and now it’s incredibly painful and has been for a few years – getting worse as time goes by.

Care is bad for women patients in the NHS. Since closing the women’s hospitals we have to travel hundreds of miles. I’m in so much pain, it is incredibly hard to to travel to several different areas of the country for what is essentially an inch difference on my body.

Common sense seems to have left the building and thousands of people are left on benefits because of operations and procedures like this…it costs the government and the tax payer millions.

During my recent (Dec 2020) consultation I was not asked my history…we didn’t have time. My kind doctor told me that my upper and lower abdominal CT Scan, poo sample and blood results had all came back normal.

To me, that is instantly worrying. They’d done a chest CT too… I have bullous lung disease, or cystic lungs…clearly visible on a scan if any one looks at it. At stage four I have a heavy shadow on my right lung unavoidable to any eye let alone a trained eye of a radiographer.

As a patient being told that they can find nothing wrong when you are unable to sit down during the consultation is an unpleasant situation. I had no option but to have the poor consultant physically examine me. She would be sure to feel the rectroentrocele (or something) to show that I am not mental.

There is no understatement when I say it really fecking hurt.

Like last year at Watford General, it was very difficult and upsetting.

More painful was her finding something, checking with me that it hurt, and then pushing on it…the pressure made my heart flip and my ears pop. I tried to go through the wall on the other side of the bench to get away from her soul pressing finger.

The doctor handed me a wipe and some tissues. Getting dressed I wondered what she had found and how on earth I was going to get through Christmas in so much pain.

The doc has told me I am in pelvic spasm and given me some cream to use until I see her again early next year. I will let you know how it goes. I’m due to see her again in February 2021 – unless we are still in covid19 lockdown and it’s cancelled.

Thanks for reading.

Poor guy.https://www.researchgate.net/publication/51172093_Hemoperitoneum_as_severe_and_unusual_complication_in_the_stapler_recto-anopexy_for_hemorrhoidal_prolapse_Case_report

Thursday is the Day – journal entry

So, I went for my CT scan at Luton hospital last week. The whole thing was utterly exhausting, and it was hard for me to keep things in perspective. I did get through it, I remained polite, I got my scan and left. This coming Thursday I will return to Luton Hospital and find out whether there is something sinister or not.

I find things difficult at the best of times but getting around during the covid19 pandemic is in league of its own, one needs a degree in logistics. To be frank, I’m in so much pain, the drive itself was a chore and I was pleased to arrive in plenty of time and find the disabled carpark fairly easily.

Because I use a wheelchair and/or a trolley seat (a mobility aid which means I can walk a bit and then sit for a bit) I had the foresight to call the hospital to check where I had to go. The information they had sent through the post didn’t include anything for disabled people. I wanted to make sure the scanning dept. was okay with me not having the blood test for the kidney function, as I wasn’t having the contrast.

The lady who spoke to me on the phone was really helpful and assured me that they always see people on time so not to arrive early, else I’d be waiting in the cold and that it was fine about the dye, I didn’t have to had the contrast.

The journey went well, I did arrive early in the carpark and thought it wise see the scanner zone and check out its location. Good job I plan for bad luck as it took me ten minutes to get out of the carpark.

I was not happy. You cannot imagine the pain I am in when I stand up. I have a walking stick and a light weight frame on wheels which pulls out into a seat. I walked around the disabled carpark, twice. I then pulled out my seat and sat down. A white van was parked near me. I could see someone sat in the driver’s seat. I stare at the windscreen.
The window of it starts winding down and a man puts his head out of the driver’s side. He shouts across to me,

“You okay love?”

“Not really,” I reply. “Am I expected to jump this fence to get into the hospital? Where’s the exit?”

He laughed.

Yeah, very funny, I thought, as I was barely keeping the tears at bay. He pointed towards the wooden builder’s hording wall just in front of us and said,

“It’s on the other side of that. Just go around to the right there, around the corner and you’ll see it.”

I thanked him, gave him a smile which hopefully did not say you fucking arsehole for watching me for what seemed like an eternity, stood up with the aid of my stick and pulled my trolley around the white painted hoarding and, yes, I found the exit of the carpark and finally, into the hospital.

How hard would it have been to put a sign there?

It was then a further ten minute journey for me of walking, sitting, walking to get to the zone where the scanner was. I arrived at 9.25am for my 9.30am appointment. The weather temperature was three degrees according to my car. I was glad to be wrapped up and was feeling smug that I had a flask of tea in the car for when I returned to it. My heart was proper pounding in my chest from the effort, but I was pleased I’d not used my wheelchair as it had all been up hill.

I had my mask on. I’ve got a black fabric one as I have lung disease and need to breathe. Since I was little, I’ve covered my mouth in the cold. It hurts less when you breathe in through a scarf or big fluffy collar or cowl. I don’t mind wearing the mask but when I walk, I cough. Nothing clears the pathway faster, like Moses parting the sea as I walked through the hospital grounds, people crossed over the road rather than walk near me.

I found the area where I needed to be as a kindly man could see I was lost and struggling. He pointed out that I was really close, and but for the lack of signs I would have known.
The kindness of strangers is something I’ve come to rely on since becoming sick. I’m thankful that as a tall person I used to help people out when I was able. As a tall person you are obliged to help out shorter people or people in wheelchairs, it’s part of the ‘tall people’s’ code.

Arriving in Area D…the CT scanner. I realized that it was directly opposite Area C, which is the children department. When I say opposite, I mean the CT Scanner door was approximately two metres from the entrance to the children’s hospital.
I only point it out as they were queuing to get in and I had to wait amongst them.

Social distancing rules have seen the hospital remove seats and benches, so I was pleased with my trolley seat and tried to position myself so that when I coughed, I was facing the scanning unit rather than the pathway. I heard several envious comments about my seat.

I feel it is an ill thought out plan to keep people waiting in the same area where sick children are also waiting. It was impossible to social distance. In order to get their temperatures checked before being allowed into the hospital this queue was being pushed passed by people leaving the hospital too.

Also, it is wrong to make people stand in the cold when there is a respiratory illness going around.

Getting temperatures checked before being allowed INTO the hospital. There are too many things wrong with this…I mean the point of coming to the hospital is that you are ill.

I listened as one by one the parents were told that only one of them could attend by the side of their sick child whilst being made to stand next to strangers coughing. There was one nurse on checking them in and she was doing a cracking job at moving the queue along. I cannot blame the staff, but surely common sense would suggest this queuing does not meet the anti-transmission guidelines.

As per a sign’s instruction, I knocked on the scanner unit’s door and waited. Nothing happened so I waited until exactly 9.30am and knocked again. A serious looking man put his head around the door and asked my name. I inwardly cringed as I feverishly hoped someone else would be in there and I’m not alone with him but keep my anxiousness under control smile and give my name. He doesn’t smile back, nods acknowledgement, repeats my name and closes the door again.

A few minutes later he opened it again and tells me that they have a patient in, and it shouldn’t be much longer. Then he squeezed passed me to go get a cup of tea. I will never know whether it was for him or the patient. I did feel that when he passed me with his warm cup of tea, he had a proper smug look on his face.

This is the perceived racism I feel when faced with some health staff since the attack, stuff I didn’t notice before but now take more personally. The sly looks. The extra waiting. The not smiling back when you smile at them. I’m more wary now, that is sad. I used to just accept it but now I cannot help but question if I am waiting longer because of my name or something else I cannot control.

I was coughing pretty much constantly by the time they opened the door, and the patient came out. I was in at 9.50am and was not in a great frame of mind. The tea man introduced himself, as the radiographer and then started to question my unsuitability claim for the contrast dye.

Back in March 2019 I had an MRI and I had contrast. It was awful and the burning didn’t stop for a month. A blood test, taken in A&E in April, showed my kidneys were showing signs of damage. The doctor told me to stop drinking alcohol rather than listen to me (and my daughter) that it was the contrast dye. I don’t drink alcohol. Not all white people like it. It is water usually in my wine glass so that I look like I’m joining in.

I did my own research and found out that people who have undergone lots of surgical procedures may not be suitable for the dye. The burning I was feeling was at the areas where they’d cut into my body at previous occasions and operations. The ions in the dye tend to group together in these areas which can cause burning sensations and pain. I don’t know why it affects the kidneys.

The MRI scan last year had taken over an hour and I’d eventually asked for it to finish as I couldn’t lie on the bench any longer. The report came back as everything okay. They didn’t note my lung disease, the TVT mesh, my leaky heart valve or the rectum staples. The only thing they noted was that I didn’t have a womb, but my referral letter had said I’d had a hysterectomy.

I thought they’d gotten me muddled with another patient, but this was all at Watford last year, now I was at Luton. Different time, different location and hopefully a different outcome.

I hand Mr tea radiographer man, the forms which they’d sent me. These are forms giving consent for use of the dye and for consent for the images to be used in research and the blood request forms.

He looked a bit annoyed.

On the forms I’d written I consented for diagnostic purposes only and not the contrast injection as I have a compromised immune response issue adding it is not suitable for me. And I signed it.

Clearly, I wanted the normal CT scan and as I had already phoned up them about it, I didn’t see why I needed to justify it again to an arrogant radiographer who obviously thought I was doing it just to annoy him. He came around from behind his glass screen.

“Who said you can’t have the contrast?”

“I did” was my response and I went on to tell him what had happened, but he waved his hand at me and went back to his little booth…he shouted,

“Which hospital did you have the MRI at?”

I replied and then watched him call Watford General. I look at him and I’m thinking…WTF. If he thinks for a moment, he can bully me into something which I know will hurt me he is sadly mistaken, and I start putting my coat back on.

I can hear him on the phone…”yeah, Samantha Harris, says she had a reaction to the dye….”

I catch the eye of the female nurse helping him. I tell her silently mouthing the words…”I’m going to go now as I’m not having the dye.”

I start to stand up as he isn’t listening…he is not listening to me at all. I’ve not had the blood tests to show that my kidneys are fine for the contrast dye. I’d had this at WGH, and it had come back okay. It obviously was not okay otherwise my kidneys would not have looked like a heavy drinkers a month after the scan.

He marches over to me and gives me the forms, releasing them just before I get my hand to them.

“You may as well have these back then.” He states as they fall down on floor near my feet.

He returns to the glass screen booth and the nurse introduces herself and helps me get up on the bench. I coughed a lot. I managed to lie still for the few seconds it takes to take the scan. I’m told I can go home as soon as I am dressed.

I make my way back to the car. I pour myself a cup of tea and cry. I then realise I’ve forgotten to get all the blood tests the consultant wanted done. I cry a bit more. I’m too tired to go back into the hospital, I drive home carefully and fall asleep until the next day.

I almost cried when the blood clinic nurse put the needle in my arm for the blood tests. It was nothing to do with her technique, it’s obviously me.

I think this shows that I am a baby. My pain threshold must be exceptionally low to be almost on the ceiling for a little blood being taken.

To me, this has to be a good sign.
Now it’s a waiting game.

I find out on Thursday afternoon what the colorectal consultant thinks about my sore behind…she is called Dr Brown. Bless her.

Letters 25th November 2020. RE Flu.

So, today I got a letter. Like the recent text messages, it tells me that I need to have my flu vaccine. It tells me that it is my responsibility to get it because of covid19…blah, blah, blah.

Good stuff you may think. I may add that I think vaccines, overall, are a good thing.

However, I am auto-immune deficient because of a foreign body reaction to polypropylene which was placed in my pelvic area during a hysterectomy for Endometriosis. I had my flu vaccine last year as I have COPD and Ehlers Danlos.

I didn’t know last year, that people who are immune compromised shouldn’t be offered the new adjuvanted flu vaccine and, it seems, neither did my doctor and I became very ill with flu over Christmas 2019. Two things –

  1. I shouldn’t have been offered this particular flu vaccine and should have had the normal one.
  2. My reaction to the new adjuvanted vaccine must not have been picked up by the system.

I called the GP. I spent three whole minutes listening to their automatic message telling me to go to the website and do the business online. Whilst listening I did try their online consultation but it is not possible to turn off the tracking cookies so my PC says no.

Anyway, I get to speak to the receptionist and explain I need a COPD check and to talk about the flu vaccine I keep being asked to have. A doctor calls me within the hour which is amazing as I just waited ten days for telephone consultation over my sore rectum.

We speak for around fifteen minutes. She checks my records, see the novel virus diagnosis and logged visits to myself last year after my flu vaccine. She has no problem checking the box which says that I had a reaction and not to be invited for it again. Brilliant stuff.

Having read the recent warnings from the American drug regulators I am wondering if the UK will also issue a similar warning. It is not suitable for everyone. Vaccines are not a one treatment for all and should be used on patients able to cope physically.

As always, thank you for your time.

Stop Discrimination in Medicine

Over and over again we are told only some people can get certain diseases and other races cannot. Even if results come back indicating a blood disorder, sickle cell will not be tested for…maybe even rickets would not be picked up because of your childs genetic makeup…although they don’t know your child’s genetic makeup…they do that on sight, by name or nationality. They = Doctors.

Rickets is a disease where monitoring and treatment is being targeted towards non whites when every child is at equal risk. Here is a medical paper saying it isn’t just non whites who suffer from it…attempting to make racist doctors understand that white children get ill too.

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)60211-7/fulltexthttps://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)60211-7/fulltext

We’ve accepted racism and allowed it to enter our health professions. As a result Rickets is on the rise and many of our sick children go undiagnosed with painful diseases for lengthy periods.

We must call out racist papers and medical trials. If a drug is to be safe or a treatment, it must be safe for everyone. As genetically we are all different – not all white people are the same, not all black people are the same and there are billions of people inbetween.

Allopurinol – known to have vicious side effects in non whites is not usually prescribed to black folks in England, or shouldn’t be. It was given to me though and caused major rash and major gout attack.

But, much worse than that, I found this video. It doesn’t even warn against giving it to black people…

So, we are all at the mercy of this distrust and it is caused by the Pharma companies.

Please be cautious about any medication given to you and read the small print carefully.

Stay safe.

Thanks for reading.

I wonder how many other drugs are known to cause harm depending on your genetics?

5 Common myths about Pelvic Organ Prolapse

“I was just showering and reached down and suddenly noticed a bulge” “I had no idea something was wrong until my doctor examined me and told me I have a stage 2 cystocele” “I started feeling heaviness in my pelvis, then was wiping after I went to the bathroom, and noticed something was there!” Pelvic […]

5 Common myths about Pelvic Organ Prolapse

Reblogged from this amazing site for women.

South African Women Be Careful

We know the media do their own things these days and news isn’t what it was. The mesh scandal was quickly swallowed up by covid19 news here in the UK.

The TVT polypropylene – the vaginal sort. It is dangerous and pharma are now going to push it at other countries. In order to make you want it they may tell you it’s worked really well here, it hasn’t.

And I found this…

LIARS

The ban is in place for a reason. You are not being denied something that is good. It was not licenced in your country because it isn’t safe. PR companies will be writing articles saying how wonderful it is. Terms like ‘gold standard’ will be used and they will claim only a tiny percentage suffer side effects.

We have fought long and hard to be listened to in our countries. Many of us are maimed and more of us cannot have sex comfortably, if at all. Plus, we still have the wee problem.

The same firm who makes them, Johnson and Johnson, advertise constantly on our TVs to sell us the pads to clear up after our bladders. Ironic.

However, we organised, we’ve realised that many of us had untreated bugs in our bladder before the operations and that was partly responsible for the loss of control.

Rather than sort this out they claim it’s our physiological makeup and surgically attempt to fix us.

It is always down to the individual but a life without sex is pretty grim. The Gynaes here have dismissed us for decades with comment like “you can still do anal”. (Not everyone likes anal).

Stay safe and please do not believe everything the pharma tells you. Look to traditional methods.

There is an old surgical method which was used for centuries which doesn’t involve shoving plastic in your pelvic region. A couple of stitches in the right place. Could be done with cameras etc still. Do not let them put plastic inside you. It makes you feel ill.

Thanks for reading.

End of today’s rant.

New National Restrictions in England – Stay at Home. Protect the NHS. Save Lives.

https://www.conservatives.com/news/stay-at-home-protect-the-nhs-save-lives