My short bio: Not sure if this AMA will get any interest but people ask me about it in real life, so: I was hospitalised with severe eczema throughout my childhood, including several extended spells in hospital where the doctors basically experimented on me and used me as a teaching resource. The real high point of that was when I was made to soak in a tub of standard eczema treatment (Dermol 500) and it burned most of my skin off within ten minutes.

When I was fifteen I had a patch test which gave me both deep scars and a long list of things to avoid. I have also been told that I have an exceptionally high histamine level, although I cannot confirm the truth of that that since it was done when I was seven. Either way, despite taking lots of very strong antihistamines, if I am scratched, bitten, or brush up against a leaf, leather armchair, kitten or whatever, then my skin will swell up instantly.

My current 'treatment' takes around 4 hours a day, and leaves me with skin looking like you can see in my proof.

AMA

My Proof: Apologies for the rather blurry shot, it's surprisingly difficult to get one's own feet to pose.

EDIT: I won't be closing this thread; I'll be going to sleep in half an hour but will answer more questions tomorrow if you have them!

EDIT 2: Still not closing the thread, but I've got to get some groceries, so I'll answer more questions when I get back if you have them. Cheers for the interest, guys!

EDIT 3: Well, I'm going to bed and I'm back to work tomorrow, so if you have any more questions I'll try to either answer them tomorrow morning when I'm getting up, or when I get home in the evening. Thanks to everyone who's already asked, it's been really interesting for me seeing what people are curious about, and nice hearing your stories! Goodnight.

FINAL EDIT: Okay, I'm officially closing this thread now. Thanks guys, it's been fun meeting you all! If you have any further questions feel free to send me a message.

Comments: 192 • Responses: 88  • Date: 

ricopantalones23 karma

I heard there was a condition where if a certain biological entity (I think some sort of worm) was inside a host's intestine the person would be rendered immune to allergic reactions.

found an article: http://io9.com/5933615/why-doctors-are-treating-allergies-with-parasitic-worms

have your doctors or your family ever looked into participating in lab studies involving that type of treatment?

sivvus13 karma

I doubt that's covered by the NHS! But I'm willing to try most things.

supernotcool15 karma

Is there anything you're not allergic to?

sivvus31 karma

Haha, yes, but I'd have to be in a nearly sterile environment to not be reacting to something in the vicinity. Happily I've yet to develop hives playing my piano.

CovingtonLane16 karma

Ivory keys or plastic?

sivvus26 karma

Plastic.

theycallmecrabclaws13 karma

What is the cringiest thing somebody's said to you when noticing your skin condition?

sivvus47 karma

I was on a tour holiday in Italy a few years ago when the tour guide started screaming at our hotel manager in Italian. I only know a little Italian, but something about the way they were pointing at me made me listen in...

... the guide was screaming at the hotel for giving us flea-infested rooms. She didn't bother to ask me what the problem was, she just started screaming at this poor manager.

Alternatively, in middle school my nickname was 'The Itchy and Scratchy Show'.

misophone923 karma

Holy shit that's mean. :(

sivvus27 karma

Eh... kids.

birchpitch10 karma

Did you correct her? Because wow, that guide was super rude.

sivvus12 karma

Yes.

cultic_raider6 karma

The tour guide had your interests at heart.

sivvus4 karma

I know. :-)

TheTalkingFist13 karma

When did you first realize that your condition was a serious problem??

sivvus24 karma

Not sure; I was a toddler. My longest hospital commitment was when I was 6-7 years old, and water burned me so painfully that I screamed and bit my mum when she tried to put me in the bath. I couldn't wear clothes because my skin was so raw and you could feel the heat from infection radiating off pretty much all of me. A lot of my hair came off with clumps of my scalp from the shampoo, and I got about 20 minutes unbroken sleep a night. The doctor sent me in to the children's ward after that.

TheTalkingFist10 karma

That sounds rough:/

Thank you for the awnser, you're the first person that awnsered me in an IaMa thread:)

I wish you the best and by reading your comments I'm sure you don't let this condition get in your way and you still enjoy life! It makes me happy:)

Cheers!!

sivvus16 karma

Aww, thank you! I'm trying to answer everyone, so I'm a little relieved this thread hasn't exploded...!

I hope you have a fun life, too! Everyone should have that. :-)

may_i_have_another12 karma

I had a friend that was allergic to a lot of things including alcohol. Whenever she drank her throat would inflame and give her heart burn but she still would enjoy drinking with everyone. Do you do anything despite being possibly allergic to what you come into contact with?

sivvus44 karma

Oh yes! I react horribly to sugar but I still drink with my friends on special occasions. I enjoy hiking and running even though I'm allergic to grass/pollen/stings/dogs. I'd never have unprotected sex despite being allergic to latex and sheepskin, and so on. I take each day with the knowledge that I'm going to react to something- might as well make it worth my while!

VaginaFishSmell16 karma

[deleted]

sivvus9 karma

Why, thank you!

Killer-Barbie4 karma

I have to use nitrile condoms. Pain in the ass to find so I just order them online

officialpoypoy29 karma

PAIN IN THE ASS YOU SAY?

sivvus23 karma

I came here expecting to find this comment.

Was not disappointed.

bunfoo11 karma

does it itch?

sivvus35 karma

Hahahahaha, nice.

Oh wait- serious answers!

Sometimes it itches, sometimes it burns. The deep infected ulcers throb. At about 3am every night I wake up because I sweat in my sleep and soak off the tops of any scabs, so then it bleeds and just hurts. The closest thing I can think of to compare it to is when you have bad sunburn- the peeling patches feel different to the dry patches, and if you accidentally catch it with your nail, well...

... and then a mosquito bites you...

bunfoo37 karma

no one should ever have to endure this. I seriously hope it gets better and you can get a better treatment.

sivvus19 karma

Thank you.

AlanaK1682 karma

Wow. I have eczema but it is nothing compared to what you endure!

AlanaK1681 karma

Yeah what that guy said!

sivvus1 karma

Yeah, I could have phrased it better :P

MrRibbotron9 karma

What do you drink instead of water?

elainedefrey12 karma

Generally, what people refer to as a water allergy is a skin reaction they get on contact with water, not anything that happens internally from drinking it.

sivvus12 karma

Exactly. Thank you!

ymg21088 karma

From your description, this seems like a constant uncomfortable condition. Does this get in the way of work? School? Also what does your treatment consist of?

sivvus25 karma

Yes, it is uncomfortable. It's a little hard to explain because I've never known what it's like not to have it, so bear with me.

Like any condition I have good and bad spells. At the moment it's ridiculously bad because of the heat, and I've had to take time off from my studies to deal with it. So, this is what I'm doing at the moment, when it's bad:

  1. Wake up, take painkillers, antihistamine and sedative. Try not to move until they kick in.
  2. Start morning regime- clean down skin with some form of alcohol. Wait for it to dry (get coffee!)
  3. Morning regime 2: whatever ointments need to be applied (betnovate, fucibet, fucidin, hydrocotozone etc- all used for different kinds of problem) are applied. Wait for them to sink in. (drink coffee!)
  4. Thick layer of first moisturiser (e.g. diprobase). Wait for it to sink in. (decide what I'm going to wear!)
  5. Thick layer of sealing moisturiser (e.g. vaseline). Try not to touch anything.
  6. Get dressed. Reapply more vaseline under seams, joins and any parts that might rub.
  7. By this point, the dry patches will have completely dried out (my elbows are terrible for this) so I have to repeat 4-6 several times before they're springy enough to not crack/flake
  8. Apply different ointment to hands. Wait.
  9. Cover worse marks on hands with plasters so they are less likely to get infected.

After I shower in the evening it's pretty much the same process, and then I do it again before I go to bed. During the day I have to do stages 4-7 about every hour, take painkillers and sedatives every 4 hours, and keep some moisturiser at hand at all times. Before I go to bed I check the worst marks for signs of serious infection, swab them out and dress them if they need it.

hector923 karma

how would you rate all of this on a nuisance scale of 0-10? Use whatever definition for 0-10 you feel inclined to. I understand that you have nothing else to compare it to.

sivvus13 karma

I try to look at the positive stuff: I get up early to do all this; that's a few extra hours I'd've slept through if I didn't have to start my meds. While I do my treatment I watch films or TV, and since I'm doing research in film theory it's working out really well. So in terms of actually affecting my life, almost 0.

It's a bit more annoying when I'm staying with friends or on holiday. I have to carry a big bag of meds around with me. So 6.

exikon7 karma

I really like how positive you are about all this. I think if I developed this from now to tomorrow I'd go mad within days. All the stuff you have to do and it still itches etc. Definetly a 10 for me if I compare it to my normal life now. However, dont let my negative attitude affect you! What do you think how it will affect you later on in life, like jobwise and so on?

sivvus9 karma

if I developed this from now to tomorrow I'd go mad

Hehe, yeah, but then you know what it's like not to have it! I think we all have things we have to deal with in our lives that, after a while, just become our 'normal'. I don't know if I'd be able to deal with migranes, for example. I'd probably find living your life just as difficult as you'd find living mine!

Hm... future life. That's a bit of a tough one, as there's a lot to it! On the one hand, my career isn't really dictated by the way I look. I was training to be a professional clarinettist at one point, but a few years touring convinced me that I couldn't control what I was in contact with, theatres are dusty as fuck, and it was far too much hassle to seek out healthcare in other countries. Plus, I needed about 4x more luggage than the others. So that was out.

At the moment I'm training to be a university tutor (which I currently work as part time) and I love it; my appearance doesn't really affect it, I can control my environment, and I'm able to keep meds in my office. So in terms of career I'm ok. I had to give up part time work as a waitress because of the washing up and steam, so I'm skint... but I'm ok!

The main concern I have for the future is with kids. I really want to have children, but I don't know if I want to create another person who has to live through some of the things I've experienced. I can deal with my own pain; I think my heart would break if I inflicted it on someone else.

exikon3 karma

I dont know if your kids would have a risk of being affected by the same condition. You can never really rule it out when you dont exactly know what it is but I think you said your family had no real history with this kind of conditions, didn't you? I'm by no means an expert but the chances arent too bad that it isnt hereditary imo. After all it's your decision (and your partners) to make though. I havent really read through everything in here but I think you dont know what exactly your condition is, right?

sivvus5 karma

Yeah, that's true, and you're very right. But it's definitely something that I'd have to discuss seriously with whoever I decide to have a family with in the future. I've seen people around me (friends, family) go through genuine psychological pain because they simply cannot deal with what I'm going through at times; as much as I tell them that it's okay, they still feel like they should be doing something, and feel guilty that I won't let them. (Well, what could they do?)

Objectively, I can see the other side of that- that there's no practical solution another person can take. But I have a feeling that as a parent I would not be able to think objectively enough to disassociate myself from my child's pain enough to do what's best for them.

I also know that, whoever my partner turns out to be, they won't have that experience to help them understand that the last thing Sivvus Jr. needs right now is a hug, or a hot drink, or a day out at the beach. That it's ok for Mini-Siv to sit in the dark in front of a fan in the middle of winter and catch a cold because it's better than the alternative. That spending £££££ a week on medicine that gets used up in a day is worth it.

Some things are so hard to grasp, even when we think about them logically, that introducing them into an inherently emotional act is a terrifying thought.

exikon1 karma

Yeah I understand your concerns. If you cant be sure your kid wont get the same condition and you are not willing to risk it you might want to look into adoption. There's always a way.

On an unrelated note. How was your experience in hospitals concerning anesthesia? Had you any operations like an appendix removal and if you had how complicated was the whole process? I assume someone that gets bad reactions to everything from leaves to water might have some problems with meds too?

sivvus3 karma

Yes, adoption is always an option. :-)

I've only had anaesthetic once, and it was a few months ago when I had an ovarian cyst rupture and bleed out inside my abdomen. The surgeon told me afterwards they had to sterilise a new room to make sure there were no traces of latex, but apart from that there were no complications. I was fine with going under, no problems, and woke up fighting off imaginary zombie velociraptors. As you do. I had perfectly square rashes from the dressings for a while afterwards, which amused me quite a lot!

IAmDaBadMan5 karma

Do you know if your condition is inherited or is it a one-off genetic an0maly?

sivvus11 karma

I have a few family members with mild eczema but nothing really unusual. I also have a brother who is nearly identical to me (we used to pass as twins) but who has absolutely no allergies at all. So I think I'm an anomaly.

sivvus18 karma

Oooh, random trivia time! So I was raised Christian and we had Sunday School classes about Leper Colonies. My brother is a bit of a smartarse, and looked up the whole etymology of the section to find out that the word 'leprosy' in the Bible is used synonymously with any skin disease. Therefore, quoth my brother, Sivvus is a leper! Can we ship her off to a leper colony miss, pleeeease?

EDIT: I apologise, your post was probably in good faith, it just amused me to remember that. As it stands: my skin sucks, my life really, really doesn't. I'm staying put.

Iskandar117 karma

Haha I like your brother.

sivvus7 karma

Yeah, so do I!

T0ast1nsanity3 karma

my skin sucks, my life really, really, doesn't.

Too bad it sounds like you are in the UK somewhere...but if you were closer, I would at least ask you to come speak to my students. We always look forward to good role models as speakers and I have to say that your outlook on life is something that is pretty awesome. It's really hard for people to separate how their skin/looks/etc are from the rest of their life. You seem like a beautiful person. (And thanks for reminding me to stop being a spaz about pimples...yikes.)

sivvus6 karma

Aww, thank you! That's very sweet of you. Yeah, I'm based in Northern England.

Out of interest, what do you teach? It sounds like you have a wonderful teaching approach/philosophy.

And pimples are the demon stealth-ninjas of the skin war, and should be loathed entirely. Feel free to spaz!

T0ast1nsanity4 karma

I will forever refer to pimples as such for the rest of my life!

I am a middle school teacher at a charter school (it's like a more independent public school but not entirely private) in Hawaii. Majority my kids are living in poverty, homelessness, drug abuse, physical abuse, etc. Amazing kids....crappy outside lives. We spend a great deal working on their emotional growth!

sivvus1 karma

That sounds incredible, massive respect to you for doing it.

I_only_ask_about_sex4 karma

Are you allergic to semen?

sivvus9 karma

Forgive the pun; that question has never come up.

rbaltimore3 karma

My friend's husband has horrible skin reactions to basically everything. He has to soak in a special bath for 2+ hours a day. In his case, it is the result of heavy metal poisoning that he got at his old job (manufacturing/metallurgy or something like that).

My aunt is likewise very sensitive to chemicals. She was a dental hygienist and loved her job, but after a decade she had to quit because she was suddenly reactive to everything there.

I'm sorry you have to deal with this. I'll refrain from having you over my house, I have a pug and a bassett who have made it their jobs to shed on every single surface in the house.

sivvus3 karma

That sounds awful, I'm so sorry that they have to go through that! Best wishes to them.

And pugs are adorable. So are bassetts, but... yeah. Pugs.

rbaltimore1 karma

The Basset, surprisingly, sheds 10x more than the pug. But he's cute, so we keep him around.

sivvus3 karma

Hehe, my housemate has a shih tzu. Cute dogs are the best.

SuperDuperLily3 karma

My friend's four year old son has what sounds like a similar situation, but it manifests itself in different ways- in his esophagus: http://www.apfed.org/drupal/drupal/what_is_eoe

My two children each have nut allergies- one who reacts in anaphylactic shock when he eats them, one who has sever eczema when she touches them. One we've traced through genetics, the other we wonder if it was inflamed by vaccinations. My girlfriend whose son I mention above has the gene for Celiac's Disease, but neither she nor her son present the actual disease. We talk a lot about genetics, allergies, and options for treatment and prevention, but frequently get frustrated with the way medical research and doctors overly-specialize these kinds of diseases. When it seems so obvious to us that they are related.

I guess my question is this- have you done much research, or taken part in any studies, trying to find any links between your situation, your genetics, your medical history (vaccines) and have you had much luck getting doctors to communicate? I know you mentioned that docs treated you like a guinea pig when you were younger, but I was more curious about official studies, not just confused and experimenting doctors. I am sorry to hear how they treated you and, as a mom, sad to hear that's how a kid feels when experiencing doctors' tests.

(And I just want to clarify- I am in no way anti-vaccine. I am very pro-vaccine. But understanding how vaccines work, we have to embrace there are some negative side effects for some people. Acknowledging these downsides does not force us to abandon vaccines but does help provide us opportunities to improve vaccines, and we should not be afraid to discuss that.)

sivvus5 karma

I'm really sorry to hear that your children have problems. I hope you get clear answers soon, and that you're all well.

They were official tests, inasmuch as they were trying to ascertain the viability of untried pharmaceutical products given that I was allergic to all the ones they were trying already!

I have a brother who is the same age as me, same genetic type, same history and medical history (as regards vaccines etc). He has absolutely nothing wrong with him, so I think that the problem is with me, and not with external factors.

redquark3 karma

Do you get random nosebleeds too?

sivvus7 karma

No. The only time I got a nosebleed was when I broke it!

wetasaneagle2 karma

That would definitely do it.

sivvus4 karma

Yeah, it definitely did. But for a brief, shining moment, before I hit the pavement, I experience true weightless flight. And it was beautiful. :-P

wetasaneagle1 karma

So how did it happen?

sivvus2 karma

I was cycling with my brother on the road when we were kids. A group of women were walking in a side-by-side line with their pushchairs (?!) in the middle of the road, and around a blind bend, for some fucking stupid reason. I swerved to avoid hitting them.

They started screaming at me for nearly hitting their kids and stopped me from moving out the road myself, and then my brother rounded the bend. He was going faster than me so he couldn't stop in time and he hit me sideways on, bent the bike almost in half and sent me flying.

I landed face first and blacked out for a second. When I came to, blood pouring from my nose and gashes on my face and hands, the women were still screaming at my brother. They completely ignored me.

A passing family in their car stopped, horrified, and offered to take me home (my brother was unhurt and needed to get the bike back, which wouldn't fit in the car). So my mum answered the door that day to her kid covered in blood, which must have been horrible for her.

TL:DR : Stupid bitches decided to walk in the middle of the road with their pushchairs, caused accident.

wetasaneagle1 karma

  1. Damn speedy reply
  2. Awesome tldr
  3. I really hope that you aren't allergic to pavement

sivvus2 karma

  1. Going through the questions from today, I guess yours was just really recent! Oh, I mean... uhm, you're special. Yeah. Diggin' that unique snowflake life, and all that. Yeah. I think I got away with it...

  2. Cheers

  3. Nah, no skin left to irritate. Boom!

johanka52 karma

Wow! How do you get through all that every day? I am struggling with a few pills a day. Well, struggling, i often think its hard. But your condition is way worse. I really admire you for your positive attitude. But were there also times that you didn't kno how to go on or just depressed?

Good luck with your medicine and i hope you stay positive and happy forever

sivvus6 karma

But your condition is way worse.

That's probably why I find it easier to do my meds. Plus, I've been doing my own meds since I was about eight, so it's so much a habit now. My friend shared a room with me a year ago and mentioned how creepy it was that I keep moisturiser by the bed and will actually do it in my sleep, like without waking up at all.

I really hope you find a way to cope with your condition; find a way to make it a part of your routine and try not to think of it as taking meds, more just another part of waking up or getting ready for bed. I hope you feel better soon!

I've been incredibly depressed on and off through the years - when I was a child I had a nervous breakdown and lots of therapy because I was bullied so much. I still have really low days when I just can't face the thought of being around people and, as you say, sometimes it's difficult to know how to go on.

I mentioned in another post that I have a huge issue with people who enable their own self-destruction- morbid overeaters etc. I get very bitter about people who complain about their lives and yet do nothing to sort them out, while I have a life where I have to spend hours a day just to appear less than normal. I make every other part of myself as good as possible to balance it out - I study a lot, I practice my skills a lot (playing instruments, drawing, public speaking, writing) and I work out every day. If I'm having a bad day I can then say, well, I can't really run today because I'm in pain, but I can make that Chopin Nocturne sound more professional, or I can learn to juggle, or...! So my life is my own, whether or not I'm having trouble.

I also have a huge problem with being pitied. I am not my disease, and it doesn't dictate who I am, so it should not dictate how people think they should treat me. So some days I get irritable around people, and just can't deal with them.

keetner2 karma

  • Have you had this condition for as long as you've had? I mean, even when you were a new born or young toddler?

  • Have they diagnosed your condition as anything, or do they just refer it as 'severe eczema'? Are your allergies just limited to your skin? Or do have any other issues like swollen airways/esophagus/etc.

  • What happens when you do get a mosquito bite?

  • Have you had any follow ups where they monitor your antibodies or specific immune cells? Like IgE or eosinophils/basophils? I'm kind of curious about what your levels might be like compared to an average person.

Sorry if it's a lot of questions!

sivvus4 karma

No worries about the number of questions!

  1. Yes, although I can't remember too much!

  2. I was around a lot of dermatologists who basically said it was eczema, yeah. But sometimes that's used as a blanket term for skin conditions, so IDK really. They're all skin-based reactions, so, for example, I can't let strawberries touch my skin, but I can bloody well eat them! I have a few seperate food allergies but that's not really relevent to this thread.

  3. Mosquito gets squished.

  4. No, they pretty much found some stuff which keeps it 'under control' and then told me to get on with my life. I've been re-referred to a new dermatologist recently, though, so perhaps something might come of that!

memetunis2 karma

I have systemic mastocytosis. Spelling may not be quite right. But seems to share some common ground with your issues. I have high histamine issues and react to many things however my lesions do not bleedn they stay under the skin. My entire body is covered in dark red marks. I have just recently started going to an immunologist and hematologist. It may be worthwhile investigating as your blood may be impacted and different meds might be available. Also this could be impacting parts of your body outside of your skin, lungs, liver, gi tract. If I'm at home I always wear my shirts inside out as not having the seams on my skin is a lot more comfortable. Good luck with your journey. Keep up your positive attitude! And whenever people stare at me I just think to myself. I'm one in a million what makes you so unique? And truly I am because each Dr reminds me how rare my disease is.

sivvus2 karma

I'm sorry to hear that, and I do hope you get some good results from your IM/HE. I do the shirts thing too, especially with nightdresses and underwear.

BertDeathStare2 karma

Can you still shower if you're allergic to water? Does it hurt?

I used to have very bad eczema on my arms when I was younger. For a while also on my scalp. It got so bad sometimes that it would be bleeding, and showering would get really painful so I only showered every 3 days or so. I avoid peanut-related foods and milk, because those are often associated with eczema ;p

Thanks for the AMA and stay strong!

sivvus4 karma

Yes, I shower daily and it hurts; I take painkillers and sedatives before I shower, wash in cold water, make sure I have a clear, non-slippery route to the toilet in case the pain makes me vomit, and apply lots of moisturiser straight away afterwards.

I'm sorry to hear you had skin problems, I know exactly what you mean about wanting to avoid the shower!

Did you also try avoiding eggs? For some reason that one keeps getting suggested to me, and I'm curious whether it's ever actually worked for anyone. I'm suspicious that it's one of those urban myths.

Vervex1 karma

I have heard a lot of people mention vegan diets and reduction of allergic reactions.

sivvus2 karma

I'm a pescatarian, I find fish oils are quite good so I eat fish, and so I couldn't go full veggie/vegan.

BertDeathStare1 karma

Sounds like a really hard condition to live with :/ I don't think that's an urban myth, most articles say the same foods are related to eczema outbreaks (and other allergies); "The most common food triggers for eczema are eggs, milk, peanuts, soy, and wheat."

I barely eat eggs, so far I'm 99% sure I'm allergic to cow's milk, and I'm avoiding nuts just in case. I might try eating a couple eggs and see if my skin responds to it though. It would suck if I had to avoid that too, eggs are really tasty and healthy ;p

sivvus1 karma

The jury's out on the egg thing really; I had one doctor make me avoid them, and the next made me eat 2 a day as he thought the protein would help me.

Good luck!

jswk2 karma

ex severe eczema sufferer here, i (kinda) feel your pain, sincerely hope that medical technology advances enough within your lifetime that your condition can be improved.

i know words on the internet bla bla bla but please do try everything you can to improve your condition, seeing different doctors, immuno suppressants, traditional chinese medicine etc

sivvus2 karma

Thank you, and yes, I do. I hope your skin continues to be "ex-severe"!

MetatextBot2 karma

This post has been associated with the following:

Title: Drug_allergy

  • allergology

  • immunology stubs

  • pharmacology stubs

These categories are not guaranteed to be correct

sivvus11 karma

Ok!

sappypants2 karma

((sivvus)) Are real ones painful?

sivvus1 karma

Real.. what?

Flamsterette1 karma

Real hugs, I expect.

sivvus3 karma

Ohhh, sorry, dumb moment then.

Yes. But sometimes a hug is worth it!

sappypants1 karma

I was giving you a hug :)

sivvus1 karma

Thanks :D ((((((((((sappypants))))))))))))

pacoseventeen2 karma

Do you think that anything the doctors have done have made the situation worse? The one thing that stands out to me is that bath where you mentioned your skin basically came off.

sivvus8 karma

Oh yes, definitely. But they also helped me, so I want to be careful here: this isn't me denouncing all doctors or anything like that. Some of them are lovely, caring and thorough people.

Then you have:

  1. Doctors who prescribe something without checking the ingredients. When you ask them if it might contain (x/y/z) they say, "Well, try it for a few weeks, and if you have an allergic reaction, stop using it."

  2. Doctors who think the holy grail of skin treatment is "Don't scratch!", and who will actually have a go at you. When I was ten I broke down in tears because a woman was basically telling me it was my fault.

  3. Doctors who don't read your notes and prescribe you something you already know doesn't work, but "I've not seen proof of that, so use it anyway."

All of these might seem like little things, but think that a severe reaction takes several weeks to heal at all. If I have a treatment which is bad, then I'll be feeling the effects of it for weeks. I tend to be a bit short with doctors now, which I feel a bit bad about, but I can't face the thought of the alternative.

Girdon_Freeman2 karma

How do you deal with your allergies to specific things, like water? It seems very improbable to live with an allergy like that. Or is that allergy just if it rubs against your skin?

sivvus3 karma

It's one of many, so it's not so much a specific reaction as yet another thing to deal with. As I said in another comment, I tend to just try to get on with my life. Showering really hurts, but I can take painkillers and medicate afterwards.

Girdon_Freeman2 karma

That sucks. As a followup question, do you ever think you will outgrow or cure your allergies?

sivvus3 karma

No, definitely not. They changed when I hit puberty but that was it.

Girdon_Freeman1 karma

That defineatly sucks. What do you plan on doing with your life? Doctor, author, nothing, etc

sivvus3 karma

I'm currently working on my doctorate. :-)

Girdon_Freeman1 karma

Congratulations!

sivvus1 karma

Thanks. 2 years to go!

Girdon_Freeman1 karma

I can see it now! Dr. Sivvus!

What type of doctorate are you going into?

sivvus1 karma

Arts/Music/Film/Literature. I'm into narratology and temporal cognition in a big way and it tends to overlap disciplines so much I can never describe my actual field.

listeningtomusic2 karma

What kind of bed sheets do you use?

sivvus3 karma

Cotton; I have anti-dustmite sheets and I clean them daily.

brogrammer_bro1 karma

[deleted]

sivvus5 karma

It tends to happen more when my skin is already vulnerable, but it raises my skin up in pinprick welts. I pretty much always have chapped lips from drinking water. The salt in my sweat and tears really stings and if I sweat too much I get hives.

tijR1 karma

Have you ever thought "why me"? If yes how do you ultimately make peace with this question?

sivvus2 karma

Yes, I have. My rule for myself is, if I ask that question I also have to ask 'why me' about all the things I like about myself, as well as the things I dislike. It helps to say them in a self-pitying tone, because it gets hilarious:

"Oh no, I'm multiorgasmic! Whyyyy meeeee?!" etc.

Seriously though, I tend to find things balance out. I'm clever and creative, which I think is partly due to reading through a lot of sleepless nights as a child. I enjoy those things. (Whyyyyy meeeee?!" :P )

Courage-To-Grow1 karma

Wait, so what does your daily treatment entail?

sivvus2 karma

Kakkuonhyvaa1 karma

How many things you are allergic to?

sivvus3 karma

I don't know. My lists are primarily chemicals such as Parabens, artificial dyes, treatment agents, perfumes and so on which are found in a huge number of things. Then I have certain materials such as leather, wool, synthetics, latex etc. So I generally have to check anything I come across to see if it contains any of those things.

naturesbitch1 karma

Can you elaborate on what being allergic to water is like for you?

sivvus5 karma

Every day you make the decision between being unclean and throwing up in the shower from the pain. You take painkillers before you wash yourself, and tend to be a bit more careful about not getting messy.

But on the plus side, I am actually allergic to doing the washing up! Result! Shame I live alone really....

naturesbitch2 karma

Jeez I can't even imagine what that would be like...

Is having a love life difficult? I mean everyone's wondering....

sivvus5 karma

The thing that's difficult for me is that I really like cuddling, but some times I just can't stand being touched. My partners have generally been understanding about that, but it's frustrating for both of us when we want to be close to each other and it physically hurts me. My most recent ex used to check with me where the bad sections were and avoid them, which was really sweet of him, but again it's not really something you want preying on your mind when you just want to lose yourself!

Aside from that, I tend to be a bit more cautious when I'm meeting new people. I don't hide my skin away, but at the same time I don't flaunt it; I've come to terms with the fact that if someone finds my skin repellant, it doesn't mean that they don't like me... but at the same time, it does mean that a physical link won't happen. I tend to get by on personality rather than looks, which is nice because I never end up having that argument about, "You just like me because I'm a redhead...!"

Also, "Did I tell you how I got these scaaaaars" is the most shockingly funny icebreaker ever.

AMerrickanGirl1 karma

Have you done an elimination diet?

sivvus2 karma

Yes. No real results.

Hwanong1 karma

Okay I'm going to sound naive but I have a lot of the same problems, I can't touch most soaps, lotions, etc, nor can I handle most fruits, I can't wear any kind of gloves except cloth gloves. I've handled these things in the past, and developed these spots (except my skin is brown, which makes it easier to hide) I may have to see a doctor for it, I just thought I was allergic to these things.

sivvus2 karma

Have a patch test and find out if you have a latex allergy. It's present in a lot of fruits. Good luck!

noxxxious1 karma

Have you ever tried therapeutic use of L-Methionine, which is said to reduce histamine levels?

sivvus2 karma

No, I haven't! Thanks for the suggestion.

noxxxious1 karma

There are some potential side effects of course and I'm sure interactions, obviously IANAD and all that. And it has the worst aftertaste of anything in the world! It did help my raging allergies quite a bit though.

sivvus2 karma

I have an appointment with a new dermatologist soon. I might take this thread in with me- lots of interesting suggestions!

Mishapen_Turnip1 karma

You come across as a pretty positive person. Has your condition had a positive effect on your philosophy on life?

sivvus1 karma

I'm not sure about a wholly positive effect, but it definitely affects how I perceive things. Mainly other people around me. I've mentioned this a few times in this thread, but I am all about self-improvement. Everyone has something in their life to overcome - whether it's bad experiences, illness, lack of confidence, different skill sets, finances, whatever. I adore seeing people live the life that they want and that they are capable of, and overcoming these kinds of problems.

Conversely, I have no patience for people who use problems as a crutch or an excuse not to go out there and experience things. Yes, we're allowed to have difficult days and tell the world to fuck off... but we all get some better days, too, and they're the gifts.

Like I said, this isn't wholly a positive outlook. Flaws: I can be very intense. I'm sympathetic, but only to a point. I have very high standards for myself, and look for them in others. My sister-in-law describes me as "terrifying"!

I genuinely can't understand people who don't have a drive to improve themselves, even though objectively I know they have just as much right to believe that as I do, to hope they move on.

Last, it doesn't really have a finish-line. I've improved my 5k pace? Good, let's push to 10k! I can play Mozart? Let's move on to the Brahms! etc. So I'm never happy with my achievements.

So... not positive, not negative, just a way of looking at the world.

CryogenicLimbo1 karma

I have systemic allergies to nuts and tropical fruit, and whatnot. I will no longer complain about that, after reading this. I feel so bad for you!! I hope you can get treatment and will able to feel better soon.

sivvus2 karma

Don't belittle your own problems by comparing them to other peoples', sweetie. Your life is just as difficult, in all its ups and downs, as anyone else can claim theirs is! I love almonds and hazelnuts, and the thought of not being able to eat them makes me shudder! So I'm sorry you have to deal with that.

CryogenicLimbo1 karma

No, I'm just realizing how lucky I am to only have just my own shitty allergies and not yours as well. It puts things in perspective for me.

sivvus1 karma

Ok. :-)

cultic_raider1 karma

How many hours a day do you have while you are all greased up and can ignore your skin? Can you watch a whole film without being distracted by your allergies?

sivvus1 karma

No, but moisturising is so much like a reflex that it's not a huge distraction in the way you might think.

m3owmotherfucker1 karma

You're like the guy from spongebob with paper skin and glass bones.

sivvus4 karma

I also live in a pineapple under the sea.

PlasticGirl1 karma

I had a friend who had severe dryness and eczema growing up. It wasn't until she was in her late 20s did a doctor finally diagnose her with Sjogren's Syndrome. I wonder if you have the same symptoms of this too. Oh and also - have you tried coconut oil as a moisturizer?

sivvus1 karma

Sjogren's Syndrome

I'll look that up.

Yes, it works but I get a residue after a few tries. Same thing with hazelnut oil. One time I made a mix of coconut, hazelnut, olive and honey which was great, but I smelled like peanut butter!

spectraglyph001 karma

If I had your condition, I would have the attitude that obviously my immune system needs something to do, therefore I shall give it something to do! Then, I would engage in activities that were conducive to introducing pathogens into my body. If this failed to have an appreciable effect on my condition, I would do everything in my power to contract HIV. Sure it would kill me, but I would get the satisfaction of giving my immune system a giant FUCK YOU!

That's me, but do you ever feel the need to take punitive action against your immune system for doing this to you?

sivvus3 karma

o.O

Are... are you okay...?

Hm. Serious answers, serious answers... I don't get sick on purpose; being ill is boring.

But when I get frustrated I run a lot more than usual so I'm the one inflicting the pain. ;-)

snmcamper0 karma

[deleted]

sivvus1 karma

Your tone of absolute certainty is quite possibly the creepiest thing I've come across. Bravo!

tellmeanother0 karma

I had something similar after going to a strip joint. It was in exactly the same place as the picture. The only way I got rid of it was to shower morning and evening everyday and wash my sheets every week. The most important part was not scratching no matter how big the urge.

Just realised my advice is useless :P

sivvus3 karma

Just realised my advice is useless :P

But it was kindly meant! :P

[deleted]0 karma

[deleted]

sivvus4 karma

Humidity tends to make infections spread faster, but dry heat dries it out. I live in England, so the constant grey, cold, rainy days actually work out alright.

EDIT: And apart from my skin, I actually have a enjoyable life! I wouldn't want to move away.

amd311 karma

See I live in the UK as well and have eczema. I find that the cold and wetness is less than beneficial and my condition only really flares up during the winter. Also have you tried sunbeds? I've heard they work well on some skin conditions and lessen other ones?

sivvus3 karma

I've never tried sunbeds, but I do tend to find that in the spring I'm at my best- dry sunshine actually helps me. I'm really sorry to hear that you're struggling. Do you find going between the cold and the stuffy indoor heat makes it worse?

amd311 karma

Yes I think cold and stuffy heat make it worse. I try and get round this but never having my radiator on but I think I also react to older buildings. You mentioned earlier that you paid lot of money for your meds does that mean they aren't covered by the nhs?

sivvus1 karma

I was between jobs so couldn't re-apply for my HC2 Form.

Waiting on that now, as it happens! The postman's started looking rather nervous at my excited face appearing at the letterbox every day. He's expecting a dog, I think...

whiteorb-1 karma

I have this same problem. I take claritinn daily and got an alergy shot recently. It helped more than anything else I've ever done.

Posing_Hipster_0117 karma

Not quite sure it's on the same scope

sivvus8 karma

It still sucks that they're struggling though. :-(

Cartgate15-1 karma

Chicken pox is a virus,the resuult of the virus I's getting,at some time in the future,shingles. I might suggest you have your auto immune system checked as well as hormone levels. I have a daughter who gets shingles regularly,with no explanations yet. It may take time but waiting and suffering will not necessarily get better untill the actual cause is determined. Ie:may be in your diet and allergy reactions.... Best

sivvus3 karma

It's not actually chicken pox, it just looks similar. But thank you!

Charlie-Bucket-3 karma

Have you ever gone to a naturopath or tried homeopathic remedies?

sivvus3 karma

Yeah, I can see how huge amounts of water will help with my water allergy (?)

Charlie-Bucket0 karma

Naturopathy or homeopathic does not mean using the thing which you are allergic to to cure yourself.. nor does it mean using huge amounts of water.. Your response really confuses me. It is a holistic approach, away from drugs. Since you obviously have extremely sensitive skin my thought process was wondering if perhaps some of the things you are using on your skin are actually doing some harm since there are numerous chemicals in them. A Naturopath would only recommend natural remedies such as an oil or ointment made of a certain plants which are known for its healing properties (as one example, I'm not a naturopath nor do I study this stuff). But my point basically is that they would be recommending things that dont have harsh or irritating chemicals in them.

My question was genuine and I am still curious as to whether you have tried this approach. Since you have been dealing with this for so long, I figured you have tried everything so I was wondering how that worked out.

sivvus1 karma

Ah, okay. I've tried, at various times, every kind of oil I could come across, pure solutions such as pure tea tree, infusions such as rose water, honey and so on.

The ones that sometimes work: honey works for small infections and deep calloused cracks, and witch hazel works as an alcohol cleanser. Oils tend to build up and leave a residue but when I need deep moisturising I sometimes use hazelnut oil and clean it off after a few hours.

Charlie-Bucket0 karma

That's very interesting, thanks for the response. If things ever get too unbearable you could consider seeing a naturopath as a last ditch effort. I cannot speak personally, but my cousin is the one who turned me onto this subject. She had been dealing with an illness for years and had been tested for so many things by multiple doctors and kept getting misdiagnosed. Finally she went to see a naturopath out of desperation and the results have been night and day. I can't remember exactly what was wrong with her but it wasn't skin related anyway. Her remedy was a mix of herbal medicine, diet changes (wheat, dairy, corn --she found out she was allergic to these) and lifestyle changes to reduce her stress levels.

I know what it's like to see multiple doctors for something and get absolutely no results and to just accept it. Clearly you've got a handle on how to cope with your condition and I wish you the best.

sivvus1 karma

Thank you, I hope your cousin keeps feeling good, too!

UPVOTEBOT8875-5 karma

woman, 24 year old woman.

sivvus5 karma

Wasn't sure if there was a character limit.

[deleted]-7 karma

[deleted]

sivvus30 karma

If you read my comments you'd see that I don't have a problem with overweight people, but with what that group terms 'fat logic'. It genuinely upsets me to see people struggling in their day to day tasks when it's something which actually has a solution. But it actually offends me greatly for those same people to then insist that they deserve to be respected for being morbidly obese, and that destroying their own bodies is somehow a positive thing. My body is doing a damn good job of destroying itself; I remember asking my grandma when I was about 6 why my body "didn't like me" because it was "arguing with me". I honestly can't grasp why people are determined to be self-destructive.

TL:DR: Not an issue with obesity, an issue with entitlement in self-destruction.

EDIT: I just re-read your comment and noticed this:

your need to be accepted

At what point did you think I got on a soapbox here? I'm pretty disgusting, mate, I look like a second hand chilli-bean pizza on a good day. I don't expect people to accept me!

rbaltimore7 karma

You mentioned above that you are sexually active. That's a pretty good indicator of being accepted!

sivvus4 karma

Well, I tend to get involved with long-term friends, and they say that after a while they just stop noticing. I don't know how much I believe them, but eh...

rbaltimore4 karma

Believe them. That's how human attraction works. It's why humans are still here. Sexual attraction is complicated, and it's rare that one single trait prevents us from having sex. I am pretty scarred from a skin condition, and that's never gotten in my way. I'd like to say it's because of my stellar personality, but really it's that men seem to focus on my boobs.

sivvus1 karma

Hahaha, awesome :-D I'm kinda opposite, in that I'd like to say men like my boobs, but I'm pretty flat-chested, so I'm going to have to go with my personality(!) How about we combine ourselves into one perfect woman?

rbaltimore1 karma

Sounds like a plan!

I used to be flat chested, before I had kids, and guys stared even then. My husband says that men aren't picky.

sivvus3 karma

That's a rather barbed compliment! XD

rbaltimore1 karma

He does say that mine are better than any other gal's out there. He knows how to flatter his wife.

sivvus1 karma

Hehe!

richyboy61 karma

STOP BEING RACIST AGAINST FAT PEOPLE!

sivvus19 karma

STOP TYPING IN CAPSLOCK ARE YOU MOCKING NATURALLY LARGER PEOPLE WITH YOUR FONT CHOICE FUCKS SAKE

ShatterTheSky-18 karma

Your feet look dirty as fuck, and I'm not talking about the chicken pox

sivvus10 karma

I run a lot; they're callouses.