Vascular Birthmarks Foundation Forum - View Single Post - Any members with vascular malformation from Ireland/UK?
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Old 10-18-2011, 08:04 PM
kaykay kaykay is offline
Senior Member
Join Date: May 2006
Posts: 233

yes i also have grommets in that ear. if my headphones are up high i can hear something but to me hearing is jumbled as if i am underwater, even with one good ear i still have problems. My ear doesn't feel sore unless something presses on it too much or it folds. on occassion my doctor has syringed my ear, feels fantastic, hearing opens up for abit then back to normal.

i dunno, if birthmarks are "Nerves Gone Wild" then i think the body can react anyway if the messages aren't being sent out right. swollen lymph glands are a sign of infection right ? are they swollen in your neck when you have problems ? I do not understand it LOL

I think the MRI report said something like alot of lymph like nodes present.

Headaches yes. horrible. I really shouldn't be in the sun too long but i get spasms in my neck alot an that usually causes them.

When i get really hot i can look down and see my cheek pulsing.

People. well, take each asshole one at a time lol. school children, i try to avoid times when i go out and school is over. I wanna smack most of them. I ignore most of them or delibratly stare back and they know it. I always have shades on cause my eyes are alittle sensitive. Adults, nearly knocked some teeth out for very agressive behavior, very short temper when people are like that. I tolerate questions , depends on how i am approached, i react. I ignore looks.

last week at guy very politely asked me what i had. Did i have question god why i had it ? told him no cause i am a atheist. I had no problem until he asked if he could pray for me, asked my permission. told him again and again he could but just not now he could go somewhere else and do it and i thanked him but he just couldn't seem to let it go and finally he gave him. I was alittle pissed. he was kinda cute ha ha ha ha ha ha but damn i told you thanks but more on. bad enough my breakfast was being disturbed

i had gall bladder surgery 4 weeks from today. i had three people pray for me. two persons asked. no problem, i even accepted a rosary. but visiting hours, were terrible. i had zero sleep in that hospital an grumpy has hell. eyes closed ignoring everyone and suddenly some guy is tripping off praying then all up in my face asking me whats on my face. now if i had a metal bed pan people would of been asking him the same question. thats just damn disrespectful. i was really stern and pissed off like and lied,told them i just came out of surgery i was in pain and i needed to pee. LOL they stayed far from me the next day.

also, had the sign of the cross made to me once. i didn't know if i should burst out laughing or cry. i laughed. it was just too funny hissing at me an stuff. she wasn't right in her head.

i had this young woman, grabbing my arm rubbing it, all glassy eyed high on something I am sure, telling me she loved me. ok, thats just weird, uncomfortable and anything above the elbow is molestation according to law LOL mannnnnn i pulled away and got the hell away from her.

i don't pretend i am ok with my birthmark. I think thats lying to myself, I know i have it, i can't hide it or do anything about it. Every time i leave the house i know i am gonna meet atleast one stupid person but when i am in a good mood i couldn't give a damn. Yes i've had people stare/gaze at me while talking to me. its weird when it goes on too long i don't think they realise it. Some people think i can't talk or are afraid to ask me and asked my mother instead. i think she gets more pissed off than me.

talk to me nice i talk to you nice i'll even educate you alittle but anything other than that i usually start ignoring and walk away because they are just stupid.

I think it would be disappointing to go threw surgery and nothing comes if it. As you know though, doctors really don't know much in this field or they are far and few between. I was really glad to finally see experts at the VBF conference last year. first time in my laugh. but i didn't have my mris then so that kinda sucked but still really glad i went.
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