Natural Spirit's Multitasking Journal Of 2018

Hiya NS - glad the garden is come along :)
heavy day Yesterday as I found out I got MCAD, something told but never tested

OK wow. I’m also sorry to hear that NS it’s always a weird shock and relief to get some kind of answer that explains some shit, and then get “there’s not treatment as such, it’s just management” in the next breath.

So, I have that too. Like you say - it is a very common part of EDS, Mast Cell Activation and also some kind of POTS, often adrenally driven. I’m hoping to see a cardiologist up in Sydney who specialises in POTS conditions in EDS patients. Such a silly string of acronyms! :laughtwo: Folks refer to it as the EDS “trifecta”. I tried over-the-counter antihistamine daily for a while and wasn’t convinced it was doing anything much so I stopped. I manage it mostly with diet and avoiding things that trigger responses. I’ve not had an anaphylaxis for a long time, and that one was from an ant bite :eek: not something I consumed. We do always have about 4 EPI Pens in strategic places (including my bag) at all times, tho’.

Anyhoo - lots of foods are naturally high in histamine and some foods are known to be a bit anti-histamine (purple/red onions, yum!). I have lists somewhere, I’ll try to pull them out for you. It’s not your usual type of allergy condition either. I’ve never in my life been prone to hay fever or those types of things or seemed at all like an “allergy type person”. But it turns out that allergic reactions are more varied than hives or the usual sensory responses. Responses in the gut, the adrenals (which is part of POTS) and even the emotions can all be the effects of an allergic response. Not saying they always are, just that they can be and this is thought to be a big part of the range of symptoms that can present in EDS - seemingly randomly from our perspective, right?!

Anyway - big medical ramble sorry, but it’s not exactly off topic, seeing as it’s what we live with! I don’t know anyone else this closely who has it (apart from suspected members of my family who are as yet undiagnosed).

I’m still pretty smashed from all I have had to do around the garden lately plus the energy required for daily living, so I’ll be delaying our prospective call again, but we will talk soon. I really want to! :D :ciao:
 
Heya Amy,

You are so right! Besides the eds and pots tje Mcad was a matter of time with my symptoms. The most scary part is that I found out myself about the epi pen. The doc would call mr back Yesterday but I Did not hear anything... and the thought about getting a attack without a pen like that.... that Could actually be the end. So they better hurry with it.

Where I am totally shocked in your story is that you have medical proffesionals specialized in eds? We dont even have People to diagnose it. The clinic geneticus(Thats the official one over at our place) has a 8-10 month waiting list and then you get Someone in the first Year of education. Never seen a specialist and I Did not had enough bruices on my body for eds. “Specialists” like that make it so Damn hard to find Some help.

Thankfully I have This forum including a fellow zebra:Namaste:

Talking about it... gonna ring back the doc, that epi pen needs to be here ASap

I really wish you a quick recovery and know how big of a energy chunk simple Things can be. So Enjoy the garden and Lets talk somewhere soon Hehe:thanks::circle-of-love:
 
It’s amazing isn’t it, because here it’s still thought that there are heaps of barriers to getting access to appropriate care - and I suppose it has taken a lot of work on our part to find them, but it’s clearly nothing compared to other places, like what you are facing there.

Thankfully the internet connects people and that can be some help.

One thing that can happen is that once you find one or two people who do know something about it, they often know others, in the different relevant fields. I found out about this cardiologist from an Occuaptional Therapist who specialises in hypermobility and EDS and she has a good network.

That would be my recommendation actually, if you haven’t already tried it... See if you can find an Occupational Therapist (or equivalent) who has some knowledge and experience with it. Maybe you have one now that I think of it - because maybe that’s where you got your ring splints from :) (my hands are hanging out for those ... coming soonish )
:Namaste:
 
You are right for Sure. To bad we dont really have a specialized doctor. We have a clinical geneticus and they do way more then just that. The waiting list is 8-9 months and when I arrived She Did not take me serious. Somehow they keep going by looks(the first time it wasnt a compliment lol)

I’m Sure ill find the way, but the risks we have to take at times is cruel and not fair at all. The meds were ready when I came home and that kinda made me pull true the day.


The girls are doing good and I dont see new root rot symptoms tbh.
 
Thnx Bud, I’m at the point of Accepting A&E is the first point of turning to with emergency’s every stage before that is filled with People that like to discuss If you are ill or not. To bad but Its a global thing I guess.

The girls Didnt show more signs so I kinda hope Thats all for now. I Will add 0,5 ML chloride as you sugested and see How that Goes.
 
"The recommended amount of 3% solution of peroxide per gallon of water in hydroponics is around 3ml per liter (2-3 teaspoons per gallon) of reservoir water. "

From here:

And it doesn't last long, but on the plus side it's dirt cheap. At least it is here!
 
but on the plus side it's dirt cheap
Not here! Just 2 days ago I had to pay $15 for 400ml of 3% H202... :Eek:

you'll find the care you need
:thumb:

The genetic team who eventually diagnosed me, told me I would need to become my own expert because there is still such little awareness about the condition. :nomo:

When you think about it, Multiple Sclerosis was in a very similar state 20 years ago - with folks being dismissed as having psych problems etc. It’s taken pretty seriously now tho’. A lot of the medical experts draw that analogy and say over time things will get better.

In the meantime, we are lucky to find each other and swap info and resources!
:Namaste:
 
Oof! Makes no sense. It's not some complicated chemical compound!
IKR! And compared the prices i can find online, at Australian suppliers, that was cheap! :eek:

It’s like ti’s semi controlled ot something. There’s a disclaimer that they can refuse to sell it to you... at least at chemists there is :hmmmm:
 
Morning everyone! Yesterday I slept a little earlyer so I got a ton of messages in the morning, and I like it!


H2O2 should do the trick for you.

I had a bit left and tossed that in Two days ago. That might be Why they Didnt show more signs. Lets hope they can go on from here and No rot is beeing found anymore.


"The recommended amount of 3% solution of peroxide per gallon of water in hydroponics is around 3ml per liter (2-3 teaspoons per gallon) of reservoir water. "

From here:

And it doesn't last long, but on the plus side it's dirt cheap. At least it is here!

Thnx shed. I Did add it a few days ago and it seems to work. That link is one to keep for Sure!

Here Its like 20-25 euro for Two liter bottles, Everything else is wat to expensive in little bottles, Maybe you should look for bigger packages @Amy Gardner ? Who knows!


Not here! Just 2 days ago I had to pay $15 for 400ml of 3% H202... :Eek:


:thumb:

The genetic team who eventually diagnosed me, told me I would need to become my own expert because there is still such little awareness about the condition. :nomo:

When you think about it, Multiple Sclerosis was in a very similar state 20 years ago - with folks being dismissed as having psych problems etc. It’s taken pretty seriously now tho’. A lot of the medical experts draw that analogy and say over time things will get better.

In the meantime, we are lucky to find each other and swap info and resources!
:Namaste:

Yeah fellow patients have brought me way further then the specialists. Struggling since I was 12 it is so suprising How much doctors are looking the hypochonders... Maybe Thats a condition among docs? :battingeyelashes: :hmmmm:

In the end I just hope I’m ok and wont need alot of them anymore.





That’s what I love about 420 Mag

I never ever seen a platform This close, friendly and caring for others! Love it ^^

Oof! Makes no sense. It's not some complicated chemical compound!

Its about who has the market these days I am afraid :(

IKR! And compared the prices i can find online, at Australian suppliers, that was cheap! :eek:

It’s like ti’s semi controlled ot something. There’s a disclaimer that they can refuse to sell it to you... at least at chemists there is :hmmmm:
Refuse to sell? Like “sorry ma’am, This chemicals are Only for us to stare at, nothing for sale here!o_O:rolleyes::p
 
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