On how I became an social Internet invalid

in #health6 months ago

Hello

I hope you are all doing fine!

I haven't been posting anything online lately, and I thought some sort of explanation would be in order.

Since a child, I've had the condidion of dry skin, or commonly known as atopic exzema.

I was relatively free of any symptoms between early childhood and my teenage years, but when I was 15, I got a rash similar to hives, every time I got a contact with water.

Sadly no-one could precisely tell me what I was affected with, until I turned 18 years of age, when a skin specialist identified it as atopia (weird/dry skin in greek), or so-called atopic exzema.

I have since been hospitalized three times, and subjected to treatments ranging from light therapy and corticosteroids (external and internal) to immunosuppressants like takrolimus salva and orally administered stuff that are normally given to people with organ transplants.

These last years, I've been relatively free of symptoms, but did have a sudden rash last Winter, that was fortunately beaten away with some light therapy and cortisone.

Then, in the last two weeks, this happened:

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Both my hands are full of, what seem like burn blisters that are itching and burning like hell and when punctured, emit clear liquid, and then just hurt like an open wound.

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Since my hands, are full of them, I can hardly touch anything. Holding and using a camera, writing on a keyboard, holding a computer mouse all feel very awkward and cause pain, I have had a hard time being very creative, at all.

I hope this will pass. And I also hope I can keep posting... If not daily, maybe weekly, as long this keeps on keeping me from writing and creating new content regularly.

I heard the doctor telling me about a new biological treatment for atopy, but that I wasn't eligible for monetary compensation because I haven't recently been subjected to the immunosuppressants (that may cause cancer). The new treatment is not a cheap one, at 20k€ per year. So I'm kind of SOL there.

I am however going to get some light treatment starting next week. Let's hope that helps. Need to be in full 100% health before next November, as I promised to come to the SteemFEST with Leo.

Anyway, long rant but now I'm off to walk the dog. I am glad Ninnu doesn't pull too much.

See ya later!

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@gamer00,
I wish you get well soon! This looks terrible ofcourse! Hope you ca recover soon!
$trdo

Cheers~

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I used to suffer from this and it was horrible, during those days I feel I can’t do anything. But right before I came to Europe many years ago, it was magically cured and I haven’t had such for years now.

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I am glad you don't have to suffer from it anymore. And I hope you won't ever have to, either.

This is crippling me to the point of crying because it basically stops me from doing anything I like to do. Can't even pet Ninnu as much as I would like to. She must feel betrayed now that I can't give as much of attention I used to.

Thank you for your reply, and giving me hope I appreciate it!

I’m actually a bit scared, I think it has to do with climate and Belgium is getting warmer and warmer every year. I remember back when I had those, often months I can’t get anything done but soaking hands in water helps a bit.

Posted using Partiko iOS

Cold compresses, cool salt baths, tiger balm and vinegar do seem to take some of the itching away, but I would like to find something to help me sleep at night, and also not get a horrible itch in the morning when waking up.

Last night was especially bad, and this morning, when I went to walk Ninnu, I'd have wanted to let her run free instead of holding the leash. It's just that bad.

If I find something that actually helps for a longer while, I will definitely let you know.

Thanks. Good luck for you too!

Posted using Partiko iOS

You have dyshidrotic eczema, or pomphylox. There is no guarantee, but some people see improvement with diets that restrict nickel, cobalt and chromate. You might give that a try. Can't hurt. Best wishes!

Yep, the symptoms do match, however for me it is all part of my genetics.

I've got a son-in-law and three grandkids with a novel gene mutation that requires them to take multiple shots each day of an IL-2 blocker, anakinra, so I understand what a bitch genetics can be. Hopefully your doctor finds the right treatment. Best wishes!

You must mean IL-1 blocker, I did a quick web search.

Yeah, it looks like the new medicine the doctor mentioned to me is also an interleukin blocker too. In my case it's a dual inhibitor that blocks both IL-4 and IL-13. It might be effective... But since the drug is so new, it costs an arm and a leg.

I hope it either gets cheaper, or that cryptos become default world currencies soon, either way might help me.

Thanks for the encouragement. :)

That's the one. My daughter just got a shipment yesterday, boxes and boxes on the porch with coolpacks to keep the temperature dcuring shipment. They have four in the family on the shots, several times daily in some cases and, yes, it is quite costly.

Get well soon and I’ll hope you’ll make it to SteemFest 🙂

So sorry about your atopic and I wish that some good treatment will cure or reduce the pains. Take care.

Hope you get well soon fastttt and we all enjoy your posts back :)

Yep, I'm really hoping it will pass soon. Thank you for the kind words and patience. I do appreciate it a lot! :)

That sucks! I'm sorry to hear that. Hopefully the treatment you're going to do will help. Take whatever time you need to heal up. May you have a rapid recovery!

I hope they can fix you up. At first glance it almost seemed like you had gotten into some poison ivy or such. That has truly got to be annoying as ever to not be able to do what you wish.

Oh! This is very unfortunate for you! This reminds me of what my little niece used to suffer from as a small child and erupted again several years later.

I would advise you to stay away from all chemical treatments and steroid as these just suppress the symptoms and don’t really cure the causes of your ailment!

When you are in Bangkok, I would like to recommend you to see a homeopathic and General Practitioner (GP) here. Or, else I would recommend you to take some local Thai herbal supplement from a famous herbal hospital in Thailand.

My niece suffered badly after taking too much chemical medicines and her health suffered badly from all the steroid pills and other treatment!

Alternative medicine is more gentle to the body. It doesn’t try to fight violently with the body.

I do hope you will get better soon!
Please look at your diet and make some changes as what you eat affect your body!
Drink a lot of liquid and take fresh fruits to detox all the chemical pills you have been taken!

Good luck.

Meanwhile you could look at my post on China Town

Let's hope that 1-2 years from now BTC will do what it has always done after reward halving so far. I could certainly live with $300k Bitcoin and $30 STEEM.

I might even be able to pay for the new medication, yes. It would be nice.

Look, my slider said that upvote was worth $0.02. The curve caused its value to halve. I had to give a 50% vote. I'm done upvoting comments.

I swear I have been seeing some wonky votes when I vote. Sometimes it seems to be right, other times it is about half of right.

Is there still a dust threshold? I dont even bother trying to remember all the rules anymore lol.

I think there is a dust threshold.

What I've noticed is that some front ends show my vote value according to the linear rules when I'm voting something but the final result is according to the sub-linear curve. In practice, if I'm the only voter of something and my vote value is $0.02 according to linear, it turns out to be worth only $0.01. But if I'm voting on something worth at least 20 STEEM, then my vote value is back to $0.02. This is what you'd expect.

Another problem for Steem. Comment upvotes are a thing, so they should consider making it feasible to give voters a reason to vote.

Then again if it puts a damper of value extraction by farming comment votes, then it might be worth it.

I don't really understand, but maybe we should just do away with votes and reward people from reads? That's the logical conclusion when all voting is deemed "not worth it".

How would you verify that someone has read something?

The front-end might. There are pages that react to what you are doing on them.

Ever been to a page where you are greeted with a chat when you've been reading for a while?

They never engage the chat before you've scrolled through a page or two. It's almost like they knew you had been actively reading the page.

Hi, @gamer00!

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Hi @gamer00!

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Sorry to hear that. Surely treatment will eradicate the problem. All the best brother.

This looks bad ... I hope someone can fix it :(

Hope you get well soon. 🙏

I have largely fixed mine with a dietary change. A few years ago I went to a naturopath and she treated me for leaky gut. I used a particular protein powder for a few months and then switched to pea protein. As a child I got staph infections from scratching, as a mid 20 year old I became a complete weeping mess of skin. The best and most lasting relief I have found is the daily pea protein mix I take.

I would highly suggest finding a naturopath who is well versed in leaky gut syndrome.

Sorry about your health, please get better and I wish you all the best.

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Oh! I just remember something!
You should try not to contact chemicals such as dog shampoo etc! Wear gloves when using chemical liquid!

Yea I know, any kind of soap seems just to aggravate the itchiness. We are out of gloves, I think I should re-stock on those.

I'm taking the kids to a fun-fair today. Hopefully it'll take my mind off my hands.

Oh! No! Running out of gloves!
If I were near you, I’ll give you some Thai herbal soap made from kumin which is well known for healing rashes and skin conditions!

Could you find Tea Tree oil product of the Body Shop from London?! Their body wash is excellent for rashes and boils! Give it a try! I have been using this for more than ten years for healing rashes and itchy bites by insects!

All the best for your quick recovery.

Hope it goes away same way it came. Sorry to hear this but I do hope the light therapy goes well

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