Shinyitis Support Group

[DeloresRose]

I have bought some stuff, the only thing vape related is coils from AVS and vape Kitchen from Nic River. I bought a few things for Christmas gifts, bought some Pottery Barn stuff and things from Chewy for the furry kids that inhabit my home and make it dirty

Oh that’s right! I’m supposed to be buying stuff for other people!

 

[charlie1465]

@charlie1465
So sorry to hear your back in the hospital. The anemia sucks. I’m still taking supplements for anemia from blood loss during surgery. In the hospital they’ll be able to get your levels back to normal hopefully quicker.

I hope you feel better and get discharged feeling great very soon!!!

Please keep us updated. Sending healing thoughts to you -s

Thank you and yes I'm on my second transfusion.... Once it goes down too low only blood transfusions will suffice.

Hey if you're on supplements floradyx is very good... It's made by Salus a German organics company and is better than taking Dr prescribed tablets. You mustn't take it as well as the tablets though

 

[charlie1465]

Sorry to hear that you're not too great at the moment @charlie1465, hope you feel better soon. Seems we're all having weird issues of some sort.

I had to go to hospital on Thursday 28/11 @22:00, due to a massive amount of pain, numbness and altered sensation in my right arm and shoulder with swelling as well. Had a horrible time as I can't leave my partner by herself as she's my support network and also has muscular dystrophy (still don't know exactly what type) and she has to use a wheelchair out and about due to some mobility limitations.

Was sent from A+E to an out of hours doctors and had to wait 5 hours to see a doctor, who then said the same thing as the paramedic that assessed me. It's neurological, and I don't know why you've been sent here as we can't do anything here.

So was then sent back to A+E with the use of only one arm and not given any help with getting me and my partner there. So had to suck it up and do it, which raised my righteous indignance levels to 11.

Had X Ray's of shoulder and forearm after another assessment in A+E where bloods were taken and promised a ultrasound scan, was then sent to an ambulatory care unit in the hospital which was more of a joke. As they wanted to take bloods, even though they had been taken. They didn't even check the system for them!...

As at this point they're thinking that I could have a VTE or clot without anything in the blood work confirming it!...

Got the right arm ultrasound scanned, and of course me being me. Asked the ultrasonographer what they were seeing and they were wonderful, and confirmed no VTE whatsoever.

So back to this ambulatory care unit, where when I was called again the staff member could see that I had limitations and was racked with pain, and they walked off so that I had to pursue them.

They then promptly reiterate no VTE and can see that I have issues and discharge me form their care, and then complain about my attitude towards them without looking at their own!..

So at 12:00 29/11, that's 14 hours folks. I was kicked to the curb without any real idea what the problem is and nothing really put into place to find out either. And aren't they're supposed to have a duty of care!...

So not a great experience at all, and my partner is worried sick about me. And yes, she can be a pain. But she's my pain and I don't know what I'd do without her.

Hey sorry to hear this.... Chin up my friend.

My stepfather just went through a weird process where he suddenly got terrible headaches and he was hospitalised for a suspected blood clot. It's a long story so I'll skip the middle bit but after going through all the tests under the sun over 6 months he ended up up at a physio who suddenly improved the headaches. So they now think that it was something muscular. He still gets the headaches when he coughs sometimes but it's all vastly better because of the physio.

Just thought that this anecdote might help......

 

[DeloresRose]

Thanks @Zazie, certainly summed up an exercise in futility and demonstrated various breaches of human and basic rights.

At least I wished folks interesting times when we left, as they were a delight to deal with.

I just hope that I can get to the bottom of things before nothing can be done, but it's not looking that hopeful after 24 years plus of issues and events.

As most medics I've dealt with seem lazy and or discriminatory, as years ago a GP without any specialist training or diagnostics put in my records that I have Fibromyalgia...

Then it gets repeated ad infinitum...

The kicker is that in July I had an MRI scan that showed moderate to severe damage to the facet joints in my spine without anything showing up in my bloods. And that's Fibromyalgia?..

So now I really feel that people must be made accountable for their actions.

I’m so sorry you’re going through this! Went through very similar ordeal which I still have not gotten resolved and likely never will, because I’ve lost all respect for the local medical professionals.

The went to one neurologist and explained my symptoms and he looked at my husband and asked “Is she a SAHM?” I mean he asked my husband that! (I had a great job that I loved at the time, ended up losing it due to health issues and haven’t worked since)

Another time I was sent off for bloodwork and a tech asked me “what makes you think you have Lyme's disease?” Um, kid, ‘I’ don’t think I have it, that’s what the doc wants to test for.

I had to fight for every test I got, put up with a wall of condescending white coats, and I still got stuck in the fibro file.

And I still haven’t found any treatment that backs my symptoms down enough that I can be productive. You know, if you have one of the common complaints, a broken bone, the flu, they can find it and set out to fix it. Anything off the beaten path and they are too lazy to be bothered.

Anyway, end rant, so sorry you’re going through this. I hope you find someone who can figure it out.

 

[charlie1465]

Good morning shinies

 

[Opinionated]

Good morning shinies

Good morning!

 

[Letitia]

Good morning Shiny's

 

[Eskie]

Good morning shiners! Off to find some coffee. i better be able to find it or I won't be back her until tomorrow.

 

[Mordacai]

@muth @DeloresRose @Fidola13 @charlie1465, many thanks for your concerns. And after 24 plus years of losing capabilities slowly and trying to work with medics I'm not very hopeful.

I'm definitely going to be looking into legal action though, as this is wrong in so many levels.

At least I can confirm that vaping does indeed save lives (of asinine medics).

@Fidola13, I was wondering if it would be possible to PM and discuss things with you? As I'm wondering if I could have a form of MS that's above most medics pay grades.

 

[chanelvaps]

As most medics I've dealt with seem lazy and or discriminatory, as years ago a GP without any specialist training or diagnostics put in my records that I have Fibromyalgia..

I get this diagnosis all the time. I refuse to succumb and claim it, as it is so vague. My BIL is a well known DR and he tells me Fibromyalgia is a symptom, not a diagnosis. He says it always has been. He says younger and not so experienced DR's use it as a diagnosis.
It is a symptom of inflammation.
He says that if a DR diagnosis you with it, stop going to that DR and go to a Rheumatologists and get checked for things (Auto-Immune) like Rheumatoid Arthritis, Gout and Lupus. My BIL is in SLC Utah or I would be seeing him. Although he is retired now he is so smart and knowledgeable the whole family benefits from this.

 

[chanelvaps]

Oh that’s right! I’m supposed to be buying stuff for other people!

I know, I had to remind myself too.

 

[chanelvaps]

Is she a SAHM?

What is this?
Might be worth it for you to try a Rheumatologist to Delores. My insurance will not pay for one and, like you, I am just fed up with the mumbo jumbo of one DR to the next that just wants to say Fibro

 

[chanelvaps]

I like everything about the vaping world. The people, the community, the life it gave back to me.

I fell asleep thinking about this sentence last night. Got up this morning and had to go find this post from Rob. I knew it was from a few days ago.
It really hits home and since it is Thanksgiving time I want to share in the thanks of the LIFE IT GAVE BACK TO ME
eight years ago if I wore rubber gloves for more then 30 minutes, they would turn orange inside, I am sure from the nicotine that saturated my body. I am just now eliminating all things smoke-related that I have had for years, from the days when we all still smoked in the house. Christmas time would bring my mom and brother over to our house making it a house with 4 smokers going at it (inside) So many things were not salvageable and were tossed through the years because they were smoke-stained. In the 90's, I would have the inside of the house painted and then vow to only smoke outside. It would last for maybe a month and back inside to pollute the house I would go.
The years of coughing upon waking. Gosh, sometimes it would feel like I was coughing up a lung. I had a dream once that I had died and they were retrieving my lungs from my body (my daughter was in the room) and all medical personnel stepped back and went "eewww look how burnt they are"
I am very grateful for the life it gave back to me.

 

[Rob B.]

Good morning Shiny's! It's a rainy, cool day today, and I am still paying for Thursdays gluttony. At my age, I should know I can't eat like that any more.

Mine is self imposed, and I am so sorry for what some of you are going through. As far as I'm concerned, most of the medical community is a sham. They are not trained to keep us healthy, they are only trained to treat symptoms. They aren't interested in educating people on being and staying healthy. Like most businesses, they are just in it for the money. The more sick people, the better....Unless you are in a country with social health care. Sometimes you have to wait weeks if not months just to see someone. Then, when you finally do get an appointment, they just want to get you in and out as quickly as possible. It's hard to find a good doctor, just like hitting the lottery. Unfortunately, as with most things in this life, it's not easy to find a solution in a selfish world.

I know from personal experience that it's hard to stay positive, and if it weren't for communities like this, filled with friends like you, life would be even more miserable.

 

[Rob B.]

DeloresRose said: ↑
Is she a SAHM?

What is this?
Might be worth it for you to try a Rheumatologist to Delores. My insurance will not pay for one and, like you, I am just fed up with the mumbo jumbo of one DR to the next that just wants to say Fibro

Stay at Home Mother

 

[stols001]

Good morning shinies! I am in waking up for work boot camp. I had my first dream I remembered in a while, my kid was here. LOL just like some sort of dog I keep looking for him.

I an QUITE sure fibromyalgia isa diagnosis, not a symptom, in the sense that they have not been able to figure out what causes that type of inflammation. Inflammatory diseases run through my family like water, my kid has it (FBR) and Interstital cystitis, my mom has Chron's disease and IC. I had IC for a while but I fixed it. Thank GOD. I took abx intended for your bladder (wall) specifically I forget the name of them, but abx ALSO reduce inflammation not just infection There are theories IC is "inflammation" of the bladder wall.

IDK why it works, I don't care,, I would have killed myself if it was not fixed. It was one of them "off label" treatments that just WORKED. IDK how my mom did it.

Kid also had migraines, some other stuff. MMJ fixed them ALL and he is far more functional than when he was on like 9 fairly ineffective meds. MJ reduces inflammation a great deal. Kid still gets the fatigue a bit, but that is about all.

IDK. You can diagnose a cluster of symptoms and sometimes even treat them when you don't have a "why." The "why" would be NICE, and I assume it will come with time, and I am thinking some of it is just GENETIC. But that doesn't mean it is a real illness, it just becomes a process of elimination and treatment (for you) that works. .

I got sympathy I have bipolar I and it took me over a decade to get truly stable and there was no real "why" but I sure had symptoms and a diagnosis.
Anna

 

[chanelvaps]

does anybody know where I can get either a
GeekVape Aegis Solo 100W Starter Kit
or
Geekvape Nova kit?

On the cheap please if you know.
Thanks

 

[TrollDragon]

does anybody know where I can get either a
GeekVape Aegis Solo 100W Starter Kit
or
Geekvape Nova kit?

On the cheap please if you know.
Thanks

VapeCrawler shows 8Vape having them for $39.95
GeekVape Aegis Solo 100W Kit

 

[Rob B.]

does anybody know where I can get either a
GeekVape Aegis Solo 100W Starter Kit
or
Geekvape Nova kit?

On the cheap please if you know.
Thanks

Geekvape Nova kit $24.95 Element Vape

Geek Vape NOVA 200W TC Starter Kit

Just make sure you use Vaporesso GT Mesh coils instead of the crappy Geekvape coils that come with it.

 

[chanelvaps]

Thanks TD. I have stopped using VC because I was told they only list sites that pay them.
I found what I was looking for here
GeekVape Nova Starter Kit 200W