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-   Living with a birthmark - my story (http://birthmark.org/board/forumdisplay.php?f=17)
-   -   "You been microwaved?" (http://birthmark.org/board/showthread.php?t=2801)

Madeleine 03-03-2008 05:28 AM

"You been microwaved?"
 
I am a 23 year old that has port wine stain on the majority of my body. It covers both my arms completely, my chest, my back(lighter and spottier), my right buttock, and large splotches on both of my thighs. That said, I haven't been to a doctor for it since I was a toddler, and I do not even notice or care about it. I have noticed while reading a lot of other stories that people are very self conscience and obsessive about their birthmarks, and it is very sad. I do know that I am lucky and have none on my face and that makes a big difference, but it is very upsetting to see how upset some people are about small marks, in inconspicusuous places. Even with my marks I wear a bikini, and let people think I am sun burnt. I wear low cut shirts and short skirts because I feel that if someone has a problem, it's their problem, why should I worry what they think. I seriously had a very Southern gas station worker ask me if I had been microwaved, how can I be upset about what she thinks, if she thinks that's what did it. My friend had to hightail it out of there because he couldn't control his laughter and I practically fell over from laughing so hard when I got outside, I couldn't even make it to the car. I sometimes correct people and sometimes I just go along with their story. I will say though that I don't even notice people staring or commenting and one day my boyfriend said that I had eight people comment on it and I could only remember two so I really don't focus on the questions. I also know that I prefer people asking about it than just wondering and thinking something worse then it is. I know that I stare a people who have weird things going on and I even stare at people with PWS so why shouldn't people stare at me, I definitely would.

hankbartenbach 03-05-2008 04:34 AM

Hi Madeleine,

First of all welcome to the group.

Second of all WOW I like the way you think of your PWS and I could not agree more with what you said. I am exactly the same way. I have to remember to tell my fiancee about the microwave thing she would get a kick out of that one.
My personal favorite is telling the person that I was in a bar fight and they should see the other guy he is still in the hospital LOL.

I do not mind the questions either I turn to education though for the children because they have no idea and are just curious. I work in retail so I get several people daily with questions or comments about my facial PWS.

I am glad you have the curage to not let others bring you down, just remember they are only making a fool out of themselves.

Thank you for the post it put a smile on my face.

Talk to you soon.

Hank

erih 11-11-2008 06:07 PM

That's a good one about being microwaved...wow.

Shortly after my second treatment (I'd accidentally let it get infected so it was really red & stuff), I got really tired of people asking what happened & if I was ok (one lady told me to "leave him"...). I was thinking about telling people that I'd had an accident in my Chemistry class & spilled Deoxyribose Nucleic Acid.
I never did tho...was too nice.
~Eri

Judykay4444 08-28-2009 04:29 PM

Madeleine,

Thanks for sharing. I'm 39. I feel the same as you. I have two on my back and a tiny dot on my thigh. I don't give a rat's behind what people think. I wear a bikini. I used to love my birthmark, thought it was special. However, it started to cause pain at age 15. not much, just some. worsened over the years, I won't go into all the detail, but the past 5 years have been horrible. I've been lasered so much (back in 1996-ish) that I have tons of scar tissue. My main BM on my back now is dark purple with light pink patches and greyish white patches. It's bumpy and ugly, but I still don't care about that. It's the pain. It scabs up and bleeds all the time. it ulcerates. right now I have an ulcer about 3" x 2" that oozes, bleeds, and is so painful I'm on percocet. I can't sit back in a chair. I can't let anything press against it or my shirt or gauze patch sticks to it then I have to rip it off and it bleeds and ... oh gosh. I can't get the ulcer to go away. Wound Care dept. of Mercy Hospital in Canton, OH doesn't know what to do. I don't really know if I was told port wine stain as a child, but have been told hemangioma as an adult. the tumor goes deeper than the skin, through the muscle, inside the bones of my spine, into the inner spinal canal and it pushes on my spinal cord. I have a disk that bulges at times, I think when the tumor is inflamed, then my back feels broken. I have a stenosis in my vertebrae in my lower back, which pinches my nerve at the hips, and has sent me to the ER. It gets bad because I have to sit and lay funny to protect my sore, tender, painful birthmark. I was in the ER the day before yesterday. I live with so much pain I don't know what to do. I see a pain management doctor who keeps me on percocet. I can't find much information about painful, ulcerating birthmarks in an ADULT. I don't care what it looks like. I'm not worried about cosmetic issues.

I'm new to this site, and have only just begun to explore the site. If you or anyone has any insight for me, please let me know. Moisture flares up my birthmark incredibly. I can't keep it moist. I tried Silvasorb recently, but could only stand it for less than 48 hours. Talk about pain. My brother as a kid used to go out into the yard and find a slug. He'd put it on the sidewalk and pour salt on it. The slug would puff up and it's skin would split and it would turn inside-out. (boys!) When my BM gets too moist, that's what I imagine the slug felt like. It's pretty bad. So ointments have been very difficult to use.

I'm sorry for airing all my issues on your post. I just feel like you are a kindred spirit, as you have this purple/red skin covering your mid-section, and you have the same mental attitude that I have as far as people looking at your or talking about you. When people at the beach (or wherever) stare or whisper, I just walk up to them with a pleaseant attitude and tell them what it is. They have questions, I have answers, and I educate them. Everyone's happy.

Cindy C 08-28-2009 06:56 PM

So relatable!!!!!!
 
Hi, I have a strawberry port wine stain from the tip of my left leg all the way up to the top of my butt. Growing up was really bad, until early twenties, as people would ask "do you have poison oak, or have you been in a fire? Worst than that is when it is cold outside it changes from a somewhat dark pink to a bluest-purple color,,,they people don't even no what to say, LOL
Anyhow, I now wear shorts, bathing suits ect,,,as I myself not give a ratts!@#$
One thing I do have a question on, if anyone out there has something similar, regarding birthmark on entire extremities with the other "normal" being quite a bit larger than the birth mark side. My right leg weights approx 13lbs more than the birthmark leg. Doctors don't know if the birthmark is the cause,,,just wondering. Thanks for all replies, Cindy

RowdyBliss 11-03-2009 05:33 PM

Hi Cindy! You probably got an answer to this already, but size discrepancies are often the case when it comes to birthmarks on extremities. It's important to see a doctor about those things to determine if there are underlying issues.

And yeah, I can TOTALLY relate to both you and the original poster on this thread... I have a PWS that goes from the toes on my right leg, the sole of my right foot, and all the way up the back of my right leg. Mine changes color with temperature, too - and I used to really freak people out when swimming in the cold ocean and my birthmark would turn BLUE!

I have gotten "have you been in a fire?" a lot from folks. Sometimes I say, "why, yes, I have been in a fire. I was trapped for an hour with a burning beam on my leg. Thank you for reminding me of that horrible trauma." Yes, it's not nice of me - but some days, I'm just NOT in the mood to be tolerant and to educate, especially when people ask insensitive questions like that.

It's really good to find folks to relate to... :)


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