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Old 06-26-2001, 09:32 AM   #1
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Jenk24 HB User
What an Eye-Opener....

This past weekend, I was at the mall. While walking around, I saw from behind a young man with a very pronounced, very stiff walk. His feet turned inward a little, and I suspect that he may have MS, or something along those lines.

Besides his "different" walk, I also noticed his clothes. He was dressed very modern--to the point of being "hip," as they say.

I turned away, and tears came to my eyes. I didn't tell anyone what I saw, or why it affected me. But I'm sharing this story here because seeing that young man made me feel very ashamed of myself. I may get a cyst and not want to go anywhere, but I could still walk fast and furious, if I wanted to. And there he was, walking around in his best clothes, enjoying his time spent at the mall. He also had a male friend by his side, helping him at times. Oh, I still get teary when I remember it.

The adage states, "We are our own worst critic." Just remember that when others see past your acne, even when you cannot their blind eye.

JenK

 
Old 06-26-2001, 02:16 PM   #2
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AngieR HB User
Re: What an Eye-Opener....

hi there! don't feel ashamed of yourself at all. i definately don't. i feel what i feel because i'm human. some people deal with sh*t better than others. i had extreme cystic acne. at one time i counted way over 100 cysts on just my face. i looked like the pics they show in the accutane brochures. thank God i'm at least normal now. and i'm not ashamed to say it killed me inside, and it still greatly affects me.

And handicapped people normally don't want you crying over sh*t like that. so he walked weird. it seemed like he's over it and the world should be over it with him:-) i walked way the hell worse then that when i was about 14, so bad my legs were turned almost backwards and i had the most incredible limp you've ever seen. finally i became crippled enuff i had to use a chair and been in the thing for 10 years now (i'm 24 years old). The public ****** pisses me off sometimes about it to.

hearing others comments about what A**holes have said to them about their skin in the other post reminds me of all the pitiful crap i've had dealt to me by people i don't know:-)

hey, but its cool and very understandable. the world looks at me and sees the worst it can be, wonderful, but i can't change the world:-) so don't feel bad for feeling depressed over acne. its a killer of self esteem!!!! you have the right to be angry!!! it was the worst thing that EVER happened to me!!!! F*** the wheelchair, i get good parking anyway:-)

i wish you the absolute best, Pls write if you want to respond:-)

Hugs,
Angie

 
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Old 06-27-2001, 10:49 AM   #3
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Jenk24 HB User
Re: What an Eye-Opener....

Angie,

I apologize for the way that my last post came across. I didn't mean to sound oh-so-grateful for having acne rather than something like MS. I also wasn't trying to say that some other physical ailment must be so much worse than acne. I just wanted to stress that I allowed myself to get so wrapped up in my acne woes, that my eyes were blinded to the struggles of others. I snapped out of my "poor me" mentality the moment I saw that young man. It became more obvious that we're all working through things in this lifetime; mine happens to be acne and scarring from it.

I find your courage and spirit to be very inspiring. Many people in this world would give up on life, if they needed the use of a wheelchair. Just thinking about it, I can imagine myself being one of those so quick to give up, since I allowed acne to get the best of me. <IMG SRC="http://www.healthboards.com/ubb/frown.gif">

Speaking as one who (currently) has the full use of my legs, I want to add that I didn't cry over that young man--and certainly not because of his way of walking. I just felt sad that I had allowed myself to get so down about my face, when I could have other issues to deal with. I really need to put my skin condition in a broader perspective and just deal with it more acceptingly.

PS: Did you ever find the cause of your cystic acne? What did you do to help yourself? I still cannot put a finger on why I developed cystic acne in my early twenties, after all the previous acne struggles I've had.

Take care,
JenK

 
Old 06-27-2001, 02:25 PM   #4
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Re: What an Eye-Opener....

&lt;&lt;I apologize for the way that my last post came across. I didn't mean to sound oh-so-grateful for having acne rather than something like MS. I also wasn't trying to say that some other physical ailment must be so much worse than acne.&gt;&gt;

No need to apologize at all!!! i'm glad you wrote back though. i feel that to many people under estimate something "cosmetic" like acne. even doctors point out that "it could be much worse" like severe acne is something to be grateful for. in my case they can't do that anymore, because i am viewed as that "much worse" they are talking about. they don't realize that severe acne is crippling and destructive. when your face is disfigured it is not something to take lightly.


&lt;&lt; I just wanted to stress that I allowed myself to get so wrapped up in my acne woes, that my eyes were blinded to the struggles of others. I snapped out of my "poor me" mentality the moment I saw that young man. It became more obvious that we're all working through things in this lifetime; mine happens to be acne and scarring from it. &gt;&gt;

yeah, its true everyone (or most everyone) deals with some kind of sh*t in their life. some people have what seems to be the world and they throw it to the wind. some people deal with sh*t better than others. my dad had very severe acne just like me and he said that one day he just said F*** it to the world and it didn't bother him any more. he said if people didn't like it they could go to hell. i have that wonderful attitude when it comes to my disability (if people find my disability offensive, or "distracting" ....which people do believe it or not....i say f*** them and i make sure to tell them that:-) my acne and acne scarred face however kills me and i am extremely over sensitive about it. so you are not alone.


&lt;&lt;I find your courage and spirit to be very inspiring. Many people in this world would give up on life, if they needed the use of a wheelchair. Just thinking about it, I can imagine myself being one of those so quick to give up, since I allowed acne to get the best of me. <IMG SRC="http://www.healthboards.com/ubb/frown.gif"> &gt;&gt;

thank you. actually, i think i'm pretty much the same as you in a different way. i see it as my wheelchair is not "the worst it could be"....i used to have acne so bad people would turn away, so i should be thankful that i'm "only in a wheelchair now". so in a sense, the acne made me think that was the absolute worst, and so when i got better i feel "normal" now. is that hard to understand?

&lt;&lt;Speaking as one who (currently) has the full use of my legs, I want to add that I didn't cry over that young man--and certainly not because of his way of walking. I just felt sad that I had allowed myself to get so down about my face, when I could have other issues to deal with. I really need to put my skin condition in a broader perspective and just deal with it more acceptingly.&gt;&gt;

you and me both then. i'm also trying to work on my shattered self esteem and except that i'll never have smooth, beautiful skin, but i can have "normal" decent skin. but we also need to realize that we are human and we have the right to feel angry and sad about our situation. if we just sucked it up when it really did bother us, one day it will explode. i think we should cry over it and work on viewing ourselves as best we can....

&lt;&lt;PS: Did you ever find the cause of your cystic acne? What did you do to help yourself? I still cannot put a finger on why I developed cystic acne in my early twenties, after all the previous acne struggles I've had.&gt;&gt;

mmmmmmm, i started getting very, very severe acne right from the start at 15 years old. it was BAD. i tried every kind of antibiotic more then once, got chemical peels every week for a year, tried vitamins, all topicals, all over the counter meds and evrything else i could think of. fINALLY at age 19 i got a full course of accutane at 80mgs a day (when i was only 118lbs.....thats how bad my acne was, the docs wanted to get rid of it so put me on a very high dose for my weight!) i went from over 100 cysts on my face (hundreds more on my chest, back, shoulders, thighs and butt) down to nothing!!! i felt like i had just been given a new life. i am badly scarred, but thats better then huge cysts. i started getting a couple cysts 2 years later and freaked out. they gave me 60mgs a day for a long time. when i went off for some reason i started getting cysts again! now they checked for problems. i ended up showing that i have extremely high androgen levels (3x normal!!!) i had an MRI done for a tumor, but none was found. the MRI showed i have "enlarged, cystic ovaries". i also have over active adrenal glands. both adrenal and ovary are causing my high androgens, thus causing the acne. i probably have PCOS and/or CAH (adrenal hyperplasia). i also have insulin problems.

i now take high doses of Aldactone (spironolactone) to block the male androgen hormones. i order it over the internet as well as get it prescribed by the doctors. i also take 20mgs of Accutane a week, a long term-low dose approach to just suppress any acne. lastly i use a topical, Avita (generic version of Retin-A Micro). all this keeps my skin normal. Thank you God!!!

thanks for you note. hope to hear from you again!

Angie

Take care,
JenK[/B][/QUOTE]

 
Old 06-27-2001, 03:21 PM   #5
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Jenk24 HB User
Re: What an Eye-Opener....

Angie,

You're very right: sometimes you have to say, "F*** it," and other times you need to have a good cry and admit that you're hurting because of acne. Just last night, my husband started slow dancing with me. He hates dancing but knows that it usually cheers me up--bless his heart! While dancing, I kept my head against his chest, so that he couldn't see the cysts on my chin and cheek. When he asked for a kiss, I gave him a peck on his breastbone. He said, "I know that you're hiding from me, but that's okay; it doesn't matter." (I know he meant that my acne doesn't matter to him--but it does sooo much to me when it's active!)

In the past, my (current) derm told me that I don't really need microdermabrasion because my scars are rather "flat," as she called them. Fine, so they're "flat." I'm still very self-conscious about them, especially because they originated from big, painful, inflamed cysts. What seems most unfair about acne is the fact that it can leave scars even if you don't pick a single lesion! My scars are a very painful reminder of the outbreaks I've had in the past. And now that I have two new cysts, I feel panic welling inside me. <IMG SRC="http://www.healthboards.com/ubb/frown.gif"> Just more proof that acne is a *real* disease having *real* emotional/psychological effects on its sufferers.

I'm trying to fathom 80 mg of Accutane....I was given 40 mg at age 19, as well. (I am 117 lbs., so I can relate to your size.) My body wouldn't tolerate it, though. I had severe muscle pains in my legs and ribcage area; so, my derm took me off the drug. Since then (and well beforehand), I've been dependent upon antibiotics, which I'd love to stop taking. I know that all this Western medicine has negative effects on the body. Even now, I suspect that I have an ulcer from antibiotics, and I fear that my body has become too dependent upon them to fight acne on its own.

By the way, I have PCOS. I guess I should get myself to the doctor for a test of my androgen levels. Can a blood test show if one's adrenal glands are overly active? I suspect that mine are, since I've had acne since age eleven.

May I ask how you classify your scarring? I'm always interested to learn about others' skin, especially if they, like me, are scarred (both inside and out).

JenK

I'm glad to hear that Accutane is working for you, as well as Spiro. Just play it safe. Many people have had bad reactions to/from both drugs. Listen to your body very well.

 
Old 06-27-2001, 11:43 PM   #6
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Re: What an Eye-Opener....

hey there!

&lt;&lt;He said, "I know that you're hiding from me, but that's okay; it doesn't matter." (I know he meant that my acne doesn't matter to him--but it does sooo much to me when it's active!)&gt;&gt;

that's so cool you found someone who loves you so much! and who doesn't ridicule you over acne. he realizes it bothers you and doesn't tell you why it shouldn't, he just lets you deal. i'm so happy for you! i hope to one day have a "significant other", but i'm not what you would call a typical woman. i don't like children, and love blood and gut movies and video games. i've also always been attracted to women and rarely men. i blame the very high male hormones for that:-) even though they can't prove there is any connection. i'm sure high levels of certain hormones affect people in certain ways, some people not at all.... anyway, i'm happy single for now. to busy with my blossoming career as a 3d animator (which i LOVE doing).

&lt;&lt;In the past, my (current) derm told me that I don't really need microdermabrasion because my scars are rather "flat," as she called them. Fine, so they're "flat." I'm still very self-conscious about them, especially because they originated from big, painful, inflamed cysts.&gt;&gt;

thats exactly what i hate. people just assume it shouldn't bother you and to live with it. well, you wouldn't be there if it didn't bother you!! thats what YOU are paying for, their service. geeez. did you find another derm?

&lt;&lt;I'm trying to fathom 80 mg of Accutane....I was given 40 mg at age 19, as well. (I am 117 lbs., so I can relate to your size.) My body wouldn't tolerate it, though. I had severe muscle pains in my legs and ribcage area; so, my derm took me off the drug. Since then (and well beforehand), I've been dependent upon antibiotics, which I'd love to stop taking. I know that all this Western medicine has negative effects on the body. Even now, I suspect that I have an ulcer from antibiotics, and I fear that my body has become too dependent upon them to fight acne on its own.&gt;&gt;

yes, my dosage was very high, due to the severity of my acne. it was very bad.
accutane didn't give me much problem, but i am so used to crap that it didn't seem a big deal to me. i got dry skin and lips, nosebleeds and blurry vision and dry eyes. the blurry vision (mild) and dry eyes persist and are probably permanent, but it doesn't bother me. the oily skin (it looked like i had vaseline all over my face) never came back thank God! i do have digestive problems from it. thats about it. small prices to pay for something that transformed my life.

&lt;&lt;By the way, I have PCOS. I guess I should get myself to the doctor for a test of my androgen levels. Can a blood test show if one's adrenal glands are overly active? I suspect that mine are, since I've had acne since age eleven.&gt;&gt;

yeah, blood tests show your androgen levels. different hormones mean different things and whether its adrenal or ovarian or both. you can also have normal androgen levels and just hyper active sebeaceous glands.

&lt;&lt;May I ask how you classify your scarring? I'm always interested to learn about others' skin, especially if they, like me, are scarred (both inside and out).&gt;&gt;

sure. the doctors classify it as severe scarring. one doctor i did not have pre-accutane days so i was trying to explain that i used to have very severe acne. he said "i know, you have the scars to prove it". so that says it right there i guess. i classify myself as moderately scarred i think. i have "ice-pick" scarring all over my face and red marks that have been there for 5 years (i think they classify as scars now!) i had 2 laser treatments done post accutane and they didn't make much difference. pre-accutane it worked good on the small patch that they tried it on (i had to much acne for them yo do my whole face). i think my skin has now changed, become fragile and doesn't heal well. all my acne produced scars. small ones and huge cysts. no picking and still i get holes in my face. so i can sympathize with you....

&lt;&lt;I'm glad to hear that Accutane is working for you, as well as Spiro. Just play it safe. Many people have had bad reactions to/from both drugs. Listen to your body very well.&gt;&gt;

thanks. i think my body tolerates them pretty well. the aldactone i take a lot of, 450mgs a day. but only the really high dosages help me. well, i hope you find some peace soon. just know you are not alone in your struggles.

Best,
Angie

 
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