AVM

All posts tagged AVM

Crazy Lady Hormones and AVM

Published November 15, 2017 by helentastic67

Crazy lady hormones

Crazy Lady Hormones and AVM

This weeks “Today’s Lunch” has been postponed until next week.

This post is going to be exactly what you imagine it will be. So, if you are a guy (not sure I have many male followers to worry about) but if you’re still reading, strap yourself in!

My periods started at the usual time as most girls in my early teens. What we never realised is that those special blue pills that stop us killing men? (commonly known as Naprogesic) are blood thinners.

You add ½ a dozen of those, every month. Something probably happened more often than I realised, but didn’t realise exactly what, it meant was that in a perfect storm I was probably lucky I didn’t have a stroke.

Blood Thinners

One morning not long before my diagnosis I recall a bitterly cold morning, getting up to go to work. Conveniently a day Aunt Irma (IT Crowd reference) was coming to visit.

Aunt Irma

I conveniently had to wash my hair that morning and being so cold I made sure I had it hot.

Turns out water also makes your blood thin. When I had more blood in and around my brain, than normal I would get dizzy and I mean I was dizzy, I recall drying my hair a little with a towel and putting it up (in a bun that I still wear as my style) I recall drying and putting pyjamas back on, setting my alarm and going back to bed to sleep it off. I woke a few hours later to restart my day.

When I was finally diagnosed, I was told emphatically NO MORE BLOOD THINNERS!

After several years on and off the steroids (Dexamethazone) for brain swelling, sometimes my period just didn’t come for 6 months or more.

About 4 years ago, I actually went on the pill, because once a month I was an emotional mess. Rather than the previous five months, I just wanted to kill someone. I traded up to a whole day where EVERYTHING upset me EVERYTHING MADE ME CRY.

Crying

Get up, get undressed, cry! Get in the shower, cry! Get out of the shower, cry! Get the point?

Not let Helen take her second coffee in the cinema when she’d previously taken her first coffee in. Cry!

Have I mentioned, you don’t mess with me and coffee? No seriously!

Coffee 1

About a year ago, I came off the pill to find out if I was menopausal. Yeah, that word. I was only 43 years old and no I wasn’t and still am not, to my knowledge.

Menopausal

Turns out it was probably a good thing I didn’t meet my soul mate (yeah, I believe in that crap!) because I might have wanted children. I always imagined I would, but if it had I might not be here at all.

Soulmate

When you’re pregnant ladies. (presuming only the ladies kept reading) your bodies blood volume doubles. My AVM would not have coped. If my child had made it (there has been no child) I might not have made it.

So, babies, right? Not for everyone.

Privilege not a right.

Anyway, a lot of background to get to my point!

Had a bit of a tummy ache this week. Would have been mistaken to think it was Aunt Irma and except she visited last week for all of about 12 minutes. Felt that way anyway. Think I sneezed a few times and it was over.

Meanwhile the app on my phone last week had told me, it was due in six days, on the 2nd February, 2017 and its currently early October.

Don’t know when you’ll be reading this but my point ABI/AVM/Crazy Lady hormones.

Not happy Jan.

Oh, and with the no blood thinners, it’s hard, I just upgrade to Opiates – Oxy Norm!

The End…

 

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Communication – Part 1

Published August 11, 2017 by helentastic67

Communication

Communications – Part 1

I’ve been told/accused really of being terrible at communicating. I think verbally and written I communicate my thoughts rather succinctly.

Some years ago, I was expressing this issue with a friend (let’s call him Fred). Now Fred to be clear has several TBI’s (Traumatic Brain Injury) from a car accident, but let’s not hold that against him.

TBI

He suggested I do a course he did in communications. Fred told me he had thought he was really good at communicating, but having participated in the course, he realised even he could improve.

I told him, I had no time to do a course, no cash and no ability to get to a College or University. He told me not to worry about it. It was FREE and she would come to me! What? Sounds too good to be true. Fred gave me her number and I rang her and it wasn’t an actual “Course” but I think it was more of a study. I had to explain, who I was how I had “gotten” my ABI (Acquired Brain Injury). Keeping in mind I was born with my AVM (Arterial Venus Malformation).

Listening skills

I thought I was having a decent conversation who actually seemed excited to be working with me. That sounded weird, but seriously.

Then she asked me when I’d had my CAR ACCIDENT?

Car accident

What?

I was not eligible for this communication course.

What’s worse than that is, this list of things.

  1. I don’t have a communication problem
  2. People have a hearing/listening problem.
  3. All of these “research” trials are based on people with TBI’s because they can dip into the TAC bucket of money.
  4. No one is doing any kinds of study on the different kinds of ABI/TBi’s and how they are different.

 

I think my communication is different to other types of ABI, particularly TBI (no offense to people with TBI’s). So many more things wrong with this…

failure_to_communicate_meme

 

Cure

Published July 22, 2016 by helentastic67

Face mask 5

Cure!

So, let’s get to the ‘thing’!

And I’ll premise it by saying, sometimes its good time has passed because I cannot get caught up in the details. Maybe.

And I can streamline the “thing!”

After a period of seeing a few different Neurosurgeons and a period of time thinking I would have to find money to go to Europe to seek treatment because my AVM was deemed surgically inoperable. I was referred to a hospital across town and it seemed the only treatment I could have to ‘fix’ the problem had come to Melbourne and was covered by the Public Medical System! Yeah!

My AVM, still inoperable could be treated with radiation. Asked what to expect?

In simple terms, I was told I might lose some muscle tone, which I was amused by because it told me they assumed I had muscle tone. I thought I had better get to the gym and get some…

They told me my hair would “thin”.

To be clear my definition of thinning and theirs are completely different.

And they asked if I liked reading? Because I might lose some eyesight.

On the upside, I would potentially obliterate the risk of 2% a year I might suffer a stroke, bleed or worse. I’m not a gambler however if it would ‘fix’ the AVM and I would be able to  illuminate the risk of a bleed, stroke, possible death, then my mum and sister were on-board to have the radiation.

Stroke

Published May 30, 2016 by helentastic67

brain-stroke

Stroke!

Anyone can have a stroke. Young or old, unhealthy, healthy, smokers, non-smokers. You get the idea.

So we don’t say to young kids who have had a stroke, that they partied hard and took too many drugs do we?

I worked in pubs for all of my 20’s.

They were Alternative Clubs, by which I mean musically. I was a promoter/host/distributor.

Back in the day, before smart phones, when you went out to shops in retail shopping precincts to see posters of upcoming events/parties and get a nightclub ‘pass’.

I was the only promoter for the Alternative Club scene who had a retainer.

I spent several days and a week hitting the streets and sometimes up to 4-5 nights, all night out at clubs…

And I didn’t take drugs or drink, ok I barely drank. I drank Lemon, Lime and Bitters and occasionally at 4pm when my responsibilities were done, I had a Bailey’s on Ice.

I like to say, I was the most clean living person there with the exceptions of wearing leather and eating meat…

And despite writing this and explaining people still 1. Think I’m lying and 2. Presume I took drugs, even just once. NO, NO, I did not take drugs.

So you are probably wondering what happened?

Hopefully, by now you have Googled AVM. If not here is a link;

http://brainavm.oci.utoronto.ca/malformations/brain_avm_index.htm

Some AVM’s are small and operable. They are the ones that end up on those “real” medical shows. Example: Guy in his 20’s, studying hard, getting headaches, goes to hospital, they do a CAT scan.

Diagnose AVM, perform surgery.

Do touchy-feely tests in recovery.

Cured! Send home.

Helen’s commentary “um No!” Shaking head.

My AVM was large and deep (non-medical terms) mine had several arteries attached to it, feeding it and the nerve that works the left side of my body in the middle of the arteries.

They do say, if you can’t do something right, don’t bother.

So, yeah! Winning…

Christmas!!!

Published March 14, 2016 by helentastic67

Christmas lights 1

Christmas!!!

So our Christmas lights have several settings. My sister the lighting tech support recently described one of the settings as the Epileptic Fit Setting.

I’m really lucky I’ve NEVER had an Epileptic fit!

At least not a Clonic Tonic (Grand Mal) seizure.

I have things that give me a migraine, but no epilepsy. Not complaining……just saying.

I once had an appointment with a room full of Neuro type specialists and they couldn’t believe I’d never had a fit considering the size and location of my AVM.

I told the Doctors I had been to my share of dubs and dance parties back in the day and stared at enough strobe lights.

Consider this as a silver lining.

I’ve never had an epileptic fit!

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