Sick of this! Just a vent of rage and frustration

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jasonb90
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Joined: Tue Jul 28, 2015 2:44 am
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by jasonb90 on Mon Aug 17, 2015 10:00 pm

Sick of this! Just a vent of rage and frustration

Im a 29 yr old male, suffering from this terrible disease. I've been suffering from it since I was young, but became more severe during my 20's...the most important years of my life. And although I feel I have been blessed and have been able to experience many things in my life, I still feel that this disease has really taken away a lot from me.

I was once a young outgoing, social butterfly, who loved life, had a lot of friends, loved being the center of attention, loved flirting with the opposite sex, and most importantly i felt i had all the potential in the world to be whatever I wanted to be and do whatever I wanted to do in life: I had all the confidence in the world

And then it took over.

And You all know what aspects of life this disease affects, ive read many of your entries. And there is no other way to put it but it really does ruin your life.

School, work, you name it! I don't even go to the gym anymore! So I can't even stay healthy in that manner! From the clothes you wear (I loved fashion and used to love buying clothes but now am restricted to anything to cover up my entire body)
The friendships you have (being flaky and canceling on people and coming up with bullshit excuses because you don't want to go out)
My relationship with people close to me (I've become so bitter because this disease and the worst part is they don't know why they think it's my personality but it's not)
I feel like I've missed out on so many relationships because I'm to embarassed to ask a girl out.
But these are just the tip of the iceberg my friends, and you all know that.

All of my friends (especially the age im at seem to be moving on to the next step of their lives; marriage, kids, houses etc) and I can't. It's so depressing. I just want to live a normal life again and have a girlfriend and eventually have kids and move into my own house too. But that doesn't seem plausible in the near future.

The worst part of all this is that there doesn't seem to be a light at the end of this tunnel. There was a couple of months last summer where i was having GREAT DAYS! I had a good summer gig, was able to go to the gym everyday to work out, and even wore a tshirt a couple of times outside infront of people (first time in probably 5 years). My body just felt AMAZING! I thought Maybe im growing out of it!
and all of a sudden on a random day during work My skin started weeping like crazy. My face, scalp, legs. Who knows what triggered it. I was thinking the change in weather because it was a cooler night. And I haven't been the same since. It's actually gotten worse now, and it seems like it's here to stay. I tried doing everything I did last summer (routines and what not) but it's not working anymore. I've gone to see doctors n dermas so many times I can't keep track and they tell me the same thing, give me the temporary fix which most things barely have an affect now because I've used them so much.

I don't know what else to do....I've literally done it all: herbal teas, gluten free, vegetarian...n no results. This disease needs to be taken more seriously and they need to find something the will cure or at least suppress it (like prednisone) without the side affects or withdrawal symptoms. This is ridiculous how nothing has been found. This affects the lives of the victims more than people think and people need to become aware of that.

I know this is a pretty depressing and not uplifting post but I felt like i needed to get this out since im too embarrassed to talk about it with any other human being for the fear of being judged. And no matter how nice a person is, once they see that you have this disease they'll never look at you the same. My body has been ravaged by scars and thick bumpy scars and thick skin and open leaking skin, that will never seem to heal.

Sorry, Just needed to vent while sit here currently in one of my bad outbreaks.

All the best

AMND8231
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Joined: Tue Aug 18, 2015 4:06 pm
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by AMND8231 on Tue Aug 18, 2015 4:21 pm

Re: Sick of this! Just a vent of rage and frustration

Oh I really know all about what you are going through. When I was younger people thought I had poison ivy or some other contagious disease. The words eww is that contagious still haunt me. Now the disease makes me self conscious. It effects every aspect of my life. I wake up at night, digging into my skin my fingers covered in blood from the new gouges I have made. I toss and turn all night trying to get away from the intense itch that terrorizes me. I wake the other person up in my bed on a regular basis, so much that I sometimes sleep on the couch just so he can get a good nights rest. I find myself sitting in long sleeves and jeans on the beach while everyone else is in their bikinis. My neck so stiff from the sores I can barely turn my head. When I was younger I had it in only a few spots, now that I am an adult I have it everywhere.

It doesn't stop with the public, even doctors make me feel uncomfortable about it. When I complain of the itch, they look at me like it cant be that bad. But it is, it is that bad. Every day my life is affected by this. I have tried every cream out there. I have heard take luke warm showers and paste yourself with cream a million times. Well it doesn't work for me, not to mention it is no fun to have to wash your sheets everyday because you are covering them in hunks and gunks of cream. My boyfriend tries to pretend it doesn't bother him, but I can see the disgust in his eyes on some of my worse days. Last night at dinner he asked me what had happened to my eyebrows, yup attack of the eczema again. I started to cry and he didn't even know why. It makes me depressed, I don't want to leave the house and because I cant sleep at night I rarely want to get out of bed. I have children and have passed it down to one of them as well, this makes me cry too. To know that my child will have to go through all this too. Just know you are not alone, and hope that one day soon they will find a way to help us all

jasonb90
Posts: 3
Joined: Tue Jul 28, 2015 2:44 am
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by jasonb90 on Sun Aug 30, 2015 8:51 pm

Re: Sick of this! Just a vent of rage and frustration

Thanks for the reply.

Its good to know that I'm not alone. I'm glad you have a good support system, n lucky to have a boyfriend who cares. i seem to turn everyone away becuz i am too embarrassed plus its hard fir them to understand what im going thru n hard for me to explain it to them.

one day.

scratchmaster
Posts: 4
Joined: Fri Sep 25, 2015 12:05 am
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by scratchmaster on Sat Sep 26, 2015 1:18 am

Re: Sick of this! Just a vent of rage and frustration

I hear you buddy.
I'm the same age as you are. I have had it for 16 years. Its really frustrating.
Have you ever had areas completely being cured for a while?
I thought it will grow away after a few years, but it looks like its here to stay.
I am even up for donating to labs who really can find a cure . I think science is advanced enough to find a cure for this. But nothing really at sight.
Wishing you well.

CloMartin_94
Posts: 6
Joined: Thu Apr 07, 2016 11:53 am
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by CloMartin_94 on Thu Apr 07, 2016 12:11 pm

Re: Sick of this! Just a vent of rage and frustration

I am so glad I am not the only one who feels like this. I have had eczema from I was two weeks old and now I am 21 and the doctors say it will never leave me.It has got that bad in the last year I have had to take a year out of uni because I was missing so much class. I'm actually sitting in hospital now because it has decided to play up again.
I don't think people realise how much a skin problem can actually effect someone mentally and physically.I usually just get told to stop scratching or put some cream on it but people. Bit of a personal question but have your doctors put you on any medications for your skin?
I only ask because they are talking about putting me on one called Azathioprine and want to know if anyone
has tried it and has any opinion of it.

jasonb90
Posts: 3
Joined: Tue Jul 28, 2015 2:44 am
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by jasonb90 on Thu Apr 07, 2016 12:56 pm

Re: Sick of this! Just a vent of rage and frustration

Hey pal,

Sorry for having to suffer with this friend, trust me i feel your pain! and Ya for sure people do underestimate what it feels like to have this. sorry in a bit of a rush, but i wanted to get back to you. I went to my Derm about last November...and it was rough, like I actually broke down in front of him. I was that sick of it. So I told him, give me whatever you got to stop this shit and increase my quality of life because i'm over it. So he gave me three options of medication, one being more powerful than other...so he started me off withl one called "Mycophenolate". It's an immunodepressant (weakens the immune system a bit) so he says it increases your risk of cancer and so on and so forth. But i told him i don't care if i get cancer if i'm 70 i just want to be better now in the prime of my life. So so far it's actually been working like a dream, i feel normal again and can go about my day like a normal person. Also gave me some creams and stuff as well (You know, the usual steroids to back it up if need be) but this pill has been doing the trick for me and its now April. Will get a few minor breakouts here and there but i think that might have to do with my diet.

Hang in there friend, and just tell your doc, to give you the powerful stuff, fuck the creams and prednisone. I wish I would have told him that 10 years ago for me.


Hope you feel better pal and hope this helps

CloMartin_94
Posts: 6
Joined: Thu Apr 07, 2016 11:53 am
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by CloMartin_94 on Fri Apr 08, 2016 10:38 am

Re: Sick of this! Just a vent of rage and frustration

Thanks so much for replying!!
I am currently on a ciclosporin and have been from september its a immunosuppressant too but it has done nothing for me. I actually think it has made my skin worse and I have had so many silly infections because its effecting my immune that much. I think I will give these new tablets another go I am just sick of being sick because of my skin! And don't worry about breaking down in front of the doctor I do it every other week because my skin is playing up again!!
Glad I am not the only one who is and has struggled with this bitch of a disease!!

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