[ADULT - Medical Update] Angelsboi Q & A

[Tarrasque Wrangler]

Yeah, what Mythusmage said. Mazel tov.

In the final analysys, IF death comes for you, it's going to come whether you are mopey or bouncing off the walls. The only thing you can really control is how you spend the intervening time. Do you want to enjoy what you've got left and laugh in the Reaper's face, or do you want to be a "realist"?

You're sick. That's one thing that there is sadly no cure for YET. But you're also depressed, and that's robbing you of the only control you have left. And that has a cure, or at least a reasonable facsimile.

 

[RolandOfGilead]

Angelsboi -

I wrote about this in another thread, which I'm pretty sure you missed. So I'll tell you a little again.

in 1983, at the tender age of 12, just as I was going through puberty, a terrible thing happened to me: Psoriasis. Psoriasis is a terrible skin condition in which your body mass produces skin cells at 10 times the rate of the average person - in certain areas.

My skin became red, blotchy, irritated, and the outer skin cells began to die - turning into white, scaly looking patches. This happened on around 70% of my body surface - a severe case of the disease. Believe me, the last thing a kid wants in life when going through puberty in junior high or high school is a disfiguring skin disease. Its painful, it itches, its unsightly, makes it look like you have the worst dandruff imagineable -Well, some 20 years later, I'm turning 32, and guess what? only now have I found a treatment that has ANY effect whatsoever. Why? Doctors never knew much about Psoriasis before; They knew it responded to steroids (cortisone), Radiation, etc. in SOME patients. For me, none of those things worked. Turns out that the effects on the skin are only a symptom: the disease is actually an Autoimmune disease where my immune system thinks my healthy skin is infected and attacks. Then it sends signals to the effected area to "Produce skin to heal infection"... so, the treatment I'm using right now is an immunity suppressing drug called Neoral - its the same stuff they give to Liver transplant patients so their body doesnt reject the liver.

Its helping, but I cant stay on it long, it will kill me. Course, that's always an option. 35% of the people with psoriasis - not even as severe as mine - will attempt suicide by the age of 50. The thing is, I'm not dead. All those other people - they're dead before they ever pull the trigger. They let the disease rob them of joy - mostly because other people are cruel to them throughout their lives.

I guess what I'm saying is - Don't be robbed of joy. Yeah, you can be pragmatic, realistic - but what does that really solve? I'd give up my "temporary" treatment to give you back your joy. What are you willing to sacrifice to keep it?

 

[Ravellion]

Ah, Angelsboi, I thought I'd chime in. You are one of the posters who I have seen and actually remembered the picture of, so you are a bit more 'real' to me. That's just the way it works for me.

I am somewhat in the 'mythusmage camp' here, but for different reasons. I think acceptance is key. Don't try and force yourself into blissful ignorance. It is hard to do if you are somewhat intelligent, and you are a worrier to boot so that would be way too hard for you to do . Don't just think about fighting the disease either. As always, the truth lies somewhere in the middle. Accept that you have a disease, still do what is necessary to defeat it, but have your mind where you can have fun, where you can accept your now radically, and grimly altered world view.

If it doesn't work for the disease at least you will live without your normal stresslevel, which should make you feel better at least. Basically: Don't give a . It helps me through some stuff, I know that.

Keep posting mate,

Rav (slightly blurry eyed)

 

[Bloodstone Mage]

Mind over matter, man. I can't find words better than what everyone else has said before (I never know what exactly to say, but I'm like that all the time). Negative thinking doesn't get anyone anywhere. Faith and positive beliefs have been scientifically proven to help people get over physical, emotional, and psychological disorders. So hang in there, Ryan!

Godspeed, You Mighty Angel!

 

[William Ronald]

Angelsboi,

I think that mythusmage makes several good points. Although the situation is grim, the best thing to do is to try to keep fighting the disease. There is still hope, and still many things that you would like to do in life. There is such a thing as a realistic approach to an illness. However, maintainting hope can be realistic as well. If there is a chance that your health can improve, I think it is worth pursuing it.

You should know that all of us are standing with you. I do not know how much it can help, but we are here for you. I shall keep you in my thoughts and in my prayers.

 

[Holy Bovine]

Well screw this. Im tired of being Mary Sunshine.

Im tired of pretending that all will be better when given my medical history and life, its VERY plausible for me to die. Im planning on hanging around but for ONCE in my entire life, im being a realist.

Ive always ben the idealist and those that know me and read my diary know that.

But Myth is right.

I may not have long to live. You guys fight off infections every day. I get them. Every day.

You don't have to 'Mary Sunshine' all the time AB.

God knows I wasn't during my illness. I was, frankly, a complete son of a bitch to those closest to me. I was tired. Nauesous. Itchy all the damn time(that one sucked - imagine having to scratch yourself until you actually bleed - now try and get some sleep still being itchy).

I know I was lucky as hell when that call came that they had an organ for me. I wish the solution to your disease was as 'easy' as mine. I do know that a positive attitude helped me during my recovery phase (and still is I might add). But I also know that you have to be able to let your anger and frustration out. You have to be able to act human. Try to make those around you understand that sometimes you are going to be a miserable sob to be around - but that you love them deeply and need their support even during the ugly, black moods you must be feeling. Those feelings will go away as your medications begin to take hold. You have to believe that recovery is possible. The medications will give you strength and time.

Just live, Angelsboi. Just live.

 

[Mercule]

Man, I'm a huge believer in the "Say unto the mountain, 'move' and it with move," school of thought. Honestly, though, if you don't buy it, it matters not a hill of beans what I think.

The simple fact of the matter is that, regardless of what comes in the next month, year, week, whatever, you ain't dead yet. You may not be able to do a bloody thing about your body, but you aren't your body. _You_ are your mind, and you are in complete control of that.

You aren't in the ground yet, so don't act like it.

My beliefs tell me that life is all about the end. Throughout our entire lives we are shaped and tested and wrought. The truest measure of a life well lived is what we are at the end of it all. Basically, what do you know and what wisdom you've accumulated by the time the "final exam" rolls around.

It's that attitude that saw me through last Christmas season when I was laid off (sole breadwinner in the household), my grandfather died (the man after whom I'll name my first son, and the only person I've serious considered naming any of my kids after), and prenatal tests told us that our daughter would have Down syndrome (false positive, but no less stressful -- not a terminal illness, but definitely a life-changing proposition), all within 10 days.

We're _all_ going to die sometime. This life is by its very nature temporary. Someday, death will separate my wife and I. And my close friends, too. It's even possible that I'll have to bury one of my own children. Or that I could be in a car crash tomorrow and never hear my youngest's first words. Does that mean that I shouldn't put some effort into those relationships? No! Does it mean that there is no value in my actions? No!

The only difference between us is that you have a reasonable guess and how (and maybe when) it will come. Your actions now have no less meaning than mine do. So, tell me. What are you going to make of yourself before it's all done?

 

[mythusmage]

Ryan, remember these words, "I yet live."

 

[Wippit Guud]

Wippit, this much is good enough --Dinkeldog

Go get "Alive" by Edwin.
Listen to it.
A lot.

Angels working overtime,
day or night to hold the hands that bled,
all alone

 

[med stud]

Mortality rate for all of us is 100 %, with or without diseases. Some people die earlier then others, but noone of us are getting out of this alive.

You were born in a good country at a good time, you have a lot of friends and people who care for you. You were also born with your homosexuality in a time when noone would burn you for it or "treat" you with electric shocks, instead you could meet a wonderful boy friend and live with him openly.

All in all, it's a good life. It may end a bit earlier then many people, but life is about quality, not quantity.