MedicineMansGirl

[Spider Burps]

It is always quite nice to find others with the condition! I too have OCA, hence the username. I pointed it because, to most people, it is offensive. However, it isn't offensive to all, like yourself. I don't find it offensive if someone that I am close with uses it because they know that my identity isn't defined by being albino. If others use the term to describe themselves that is fine, but when other people use it in a derogatory fashion is what I have a problem with. I get that she, like most others, might not have known what the proper terminology was and I was giving the benefit of the doubt on that one. I don't take offense when someone doesn't know what the proper terminology is. I do however when people do know what is appropriate. If you know that someone is okay with the word albino, go ahead and use it, but, until you know that, it isn't okay.

I apologize Spider Burps. I responded to you and to the blog author all in one long comment. Hope that it isn't too wordy or confusing!

Well worded and no need to apologize! Also, I'm ridiculously excited that there's another FJ member with albinism!

Kind of related funny story you may appreciate: because I have OCA1B, I'm sometimes embarrassed to admit that I have albinism (because then I have to deal with "well you don't LOOK like it" and then I have to go into the explanation of there being different types of albinism and all of that jazz). I usually just end up oversimplifying and telling most people that I have a "genetic skin condition". One day, I mentioned to a friend that I can't find any makeup that matches my skin because I'm "so damned albino". She flipped out at me telling me how rude it was to call myself albino when people actually have albinism and are offended by that term. I could barely stop laughing long enough to tell her that I was one of those people! You could tell she wanted to dig a hole and die in it, but I honestly just got a kick out of the fact that she knew so much about albinism.

For the record, I was bugged by the blogger's use of "albino white", too, if only because I bet you anything that she doesn't even know what -real- white is. ;)

[BlondeAsTheyCome]

Well worded and no need to apologize! Also, I'm ridiculously excited that there's another FJ member with albinism!

Kind of related funny story you may appreciate: because I have OCA1B, I'm sometimes embarrassed to admit that I have albinism (because then I have to deal with "well you don't LOOK like it" and then I have to go into the explanation of there being different types of albinism and all of that jazz). I usually just end up oversimplifying and telling most people that I have a "genetic skin condition". One day, I mentioned to a friend that I can't find any makeup that matches my skin because I'm "so damned albino". She flipped out at me telling me how rude it was to call myself albino when people actually have albinism and are offended by that term. I could barely stop laughing long enough to tell her that I was one of those people! You could tell she wanted to dig a hole and die in it, but I honestly just got a kick out of the fact that she knew so much about albinism.

For the record, I was bugged by the blogger's use of "albino white", too, if only because I bet you anything that she doesn't even know what -real- white is. ;)

Oh my word, that is seriously funny! Those are some of the best stories. You can tell from the moment you see me that I have Albinism. People used to ask my mom all the time if she dyed the baby's hair. She would kindly respond, with a sweet smile, that she did in fact dye the baby's hair, eyelashes, and eyebrows. That usually got people to walk away pretty quickly. :)

ETA- Glad I wasn't the only one who was bothered by it. I don't take true offense unless someone is intentionally trying to make fun, which does happen, but it still was inappropriate. I hope that she decides to be more considerate now that she knows what is appropriate to say, but I'm not holding my breath.

Edited again because I do in fact know the difference between died and dyed.

[formergothardite]

You know, I have had people criticize my parenting in both real life and the internet, and it is hard to take. But it ends up that a lot of times they were right and once I got over my pride getting hurt I could see that. But even if they were wrong, I wouldn't call them fat and lazy, I would explain why I disagreed with them.

In your blog posts you talked about being so worried because you didn't know where you next meal was coming from. Sure eventually you managed to get food, but foodstamps and WIC would have removed that worry and stress from your life. What do you have against doing that? What is the beneftis of suing your landlord? Here are the laws in NC about it.

http://americanlandlords.org/landlord_t ... rolina.pdf

Your rent can be lowered so you aren't paying as much to live in a falling down house. He can be forced to fix it up. You say he has no money, but does he live in a house that is falling apart? Slum-lords will claim they don't have the money, but when forced will often managed to find it.

[Spider Burps]

BlondeAsTheyCome, people used to ask my mom if she dyed my hair/eyebrows, too, back when my hair was white-blonde. Who on earth would dye a toddler's hair?! That would have to be child neglect somehow, I'd think.

[formergothardite]

Landlord claiming to not have the money to fix up the house is number seven on this list of crazy claims landlords make and tenants shouldn't fall for.

http://realestate.msn.com/article.aspx? ... 661&page=2

If you are paying rent he should take that money and put it towards doing repairs.

[apple1]

WTF there are two adults in the house and no one can fix a pull chain on a friggin light fixture? And her husband could care less about replacing a valve on the toilet? Ach this is some good cray cray.

I missed reading the blog before it disappeared.

But I am trying to figure out what psychological problem creates the level of self-deception and cognitive dissonance that is displayed by the portion of it that has been cut-and-pasted on this thread.

I (who am not handy) have personally replaced the water supply line coming up to a toilet. I replaced it as soon as it started leaking. It cost $9 at Home Depot, and about 5 minutes of my life. Yes, your landlord SHOULD fix things like this if you are renting, but... $9 and 5 minutes... well...

As for the pull chain on the light fixture - yes, I know that it broke inside the thing. The little replacement switch costs about $4 and maybe 15-20 minutes (turn the circuit breaker off first). Is no one willing to exert that much effort (or force the landlord to do it)? Aren't there any wall outlets into which a lamp can be plugged? Why are you changing diapers in the dark?

I don't believe for one second that "the landlord won't let him touch anything". This little stuff the landlord wouldn't even know, plus no landlord would consider it in his best interest to allow property to fall into even greater disrepair. And, as already mentioned, there are laws about what landlords must provide. Why is there no accountability to get the landlord to fix this egregious disrepair?

And I still fail to see how there is money for tanning and fitness pursuits, but not money for taking care of the basic necessities of life. This does not make sense, not at all. And what really does not make sense is continuing to create more children when you are so obviously unable to properly care for the ones you already have.

BTW, FJ has heard "I'm not quiverfull, I just love children" a bunch of times already.

This is just crazy. Really crazy.

[Didi]

I am sad the blog is locked now because I am always craving blogs where there are normal Christians living normal lives... with a large family and homeschooling and all that. :) I found your blog refreshing :)

Is there any way a "fundy" can come on here and defend herself/her blog without "shitting on the rug"? I don't mean that in a snarky way I am honestly curious.

[BlondeAsTheyCome]

BlondeAsTheyCome, people used to ask my mom if she dyed my hair/eyebrows, too, back when my hair was white-blonde. Who on earth would dye a toddler's hair?! That would have to be child neglect somehow, I'd think.

I do think that would be child abuse of some sort. :) Has your vision improved at all with gaining more pigment? I have the more common form of OCA, so I will always have skin and hair that are white, and my eyes will always be an issue.

[apple1]

I am sad the blog is locked now because I am always craving blogs where there are normal Christians living normal lives... with a large family and homeschooling and all that. :) I found your blog refreshing :)

Is there any way a "fundy" can come on here and defend herself/her blog without "shitting on the rug"? I don't mean that in a snarky way I am honestly curious.

I'm totally puzzled as how this crazy can be considered

normal Christians living normal lives... with a large family and homeschooling and all that

You must have a unique definition for normal.

As has been said many times, FJ is not a "hive vagina". There are probably as many different viewpoints as there are posters here.

If anyone chooses to make anything public on the internet, be it a blog, or just posting on FJ or some other board, you can expect that some will disagree. Some may snark. Some may even take their disagreement to a higher level. The internet is not a private journal. If you want to journal privately in an electronic manner, you can, oh, I don't know, type it up in Word on your personal computer, or something similar, and NOT publish. You can email it to your close family members if it is just for them. The internet is called the world wide web for a reason.

[Patsy]

Is there any way a "fundy" can come on here and defend herself/her blog without "shitting on the rug"? I don't mean that in a snarky way I am honestly curious.

I was just recalling today, the time when Jaynee Lockwood came by. She was just as friendly as she always is on her blog, she didn't run around trying to make everyone agree with her, she didn't create drama or act smiley smiley and suddenly wheel around hissing. I'm sure there are other examples, but that's one that comes to mind.

In this case, I wouldn't say it's shit on the rug as much as explosive diarrhoea. She was friendly and then started spitting like a cat

a bunch of jealous, fat lump, e-thugs sitting behind a computer all day. ... I know you all have daddy issues because he was too weak to keep from being brain washed by Bill Gothard's stupid ass just like my family, but aren't all of you adults who have the ability to make up your own mind about the truth, get over it and move on with a free life? So, all of that being said, are there anymore brain buster questions?

[apple1]

I was just recalling today, the time when Jaynee Lockwood came by. She was just as friendly as she always is on her blog, she didn't run around trying to make everyone agree with her, she didn't create drama or act smiley smiley and suddenly wheel around hissing. I'm sure there are other examples, but that's one that comes to mind.

In this case, I wouldn't say it's shit on the rug as much as explosive diarrhoea. She was friendly and then started spitting like a cat

Good example, Patsy.

And I agree.

[Patsy]

and btw

And you lost me on the "so jealous of my family" part. I'm not following you on that one.

I was referring to

a bunch of jealous, fat lump, e-thugs sitting behind a computer all day

. Yep, obviously people posted concerns about safety because they're jealous. If they weren't so jealous, they'd ignore their concerns and be totally okay with potential injury. Or perhaps I misread you; were the nerve-prodding questions asked due to the fatness of the questioners, not the jealousy?

[apple1]

and btw

I was referring to

. Yep, obviously people posted concerns about safety because they're jealous. If they weren't so jealous, they'd ignore their concerns and be totally okay with potential injury. Or perhaps I misread you; were the nerve-prodding questions asked due to the fatness of the questioners, not the jealousy?

I'm confused. I didn't know my fat was visible on the www. Have I goofed on my FB privacy settings or something?

[Patsy]

I'm confused. I didn't know my fat was visible on the www. Have I goofed on my FB privacy settings or something?

Oh, it's okay, a lot of posters still haven't realised that their email addresses are visible by default. Just change that setting so we can't see fatjelusloser@ieatbabies.com, and you'll be all snug and anon again

[Guest Anonymous]

And if I put the blog and private mode and you can't read it then I guess it's not for everyone even being on the world wide web.

Sure, now it's not. Good for you. No one here will comment on anything you post in the future so long as it remains private. But up until that point it was all systems go on people having opinions on what you posted.

**ETA: I have no idea who you are and I've never visited your blog or commented about you until you started flipping your shit. If you get mad at someone and your first impulse is to call them fat, you suck as a person by the way. Being fat or not has nothing to do with anything. It's like calling people short.

[valsa]

Sure, now it's not. Good for you. No one here will comment on anything you post in the future so long as it remains private. But up until that point it was all systems go on people having opinions on what you posted.

**ETA: I have no idea who you are and I've never visited your blog or commented about you until you started flipping your shit. If you get mad at someone and your first impulse is to call them fat, you suck as a person by the way. Being fat or not has nothing to do with anything. It's like calling people short.

As someone who is both short and fat, I'm not even sure how being fat affects the validity of my opinions. Is rightness based on BMI? Are supermodels and starving people like gods?

[apple1]

Oh, it's okay, a lot of posters still haven't realised that their email addresses are visible by default. Just change that setting so we can't see fatjelusloser@ieatbabies.com, and you'll be all snug and anon again

LOL

[Spider Burps]

I do think that would be child abuse of some sort. :) Has your vision improved at all with gaining more pigment? I have the more common form of OCA, so I will always have skin and hair that are white, and my eyes will always be an issue.

My vision stopped deteriorating when I was about 19, but it hasn't improved. Fortunately, my vision is correctable, so I never made it to legally blind, but I can't see anything save for blurry blobs without my contacts (my prescription is -8.25 in the right and -8.75 in the left). Recently, I've been diagnosed with a slight astigmatism and I have a really difficult time focusing on things close to my face, but don't know if that has anything to do with albinism. I'm meant to use reading glasses when I'm on the computer, but I just increase the text size in my browser. Shh, don't tell my ophthalmologist. ;)

How is your vision, by the way? I knew a girl with 1A who was completely unable to drive and needed someone to take notes from the board for her, but I've met others with albinism who get by fine with just glasses or contacts.

[BlondeAsTheyCome]

Oh, it's okay, a lot of posters still haven't realised that their email addresses are visible by default. Just change that setting so we can't see fatjelusloser@ieatbabies.com, and you'll be all snug and anon again

[Witsec7]

Gosh she was on a tear. I think for every fundy blog that locks down because of FJ's interest 5 new ones become available. The universe will provide. There is no limit to the cray cray.

And I would like to clarify, I'm not jealous of any woman who is unwilling to learn how to replace a toilet valve and doesn't know how to bucket flush a john.

[apple1]

I've been trying to figure out how to change that since I joined. Can anyone fill me in? Thanks!

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[BlondeAsTheyCome]

My vision stopped deteriorating when I was about 19, but it hasn't improved. Fortunately, my vision is correctable, so I never made it to legally blind, but I can't see anything save for blurry blobs without my contacts (my prescription is -8.25 in the right and -8.75 in the left). Recently, I've been diagnosed with a slight astigmatism and I have a really difficult time focusing on things close to my face, but don't know if that has anything to do with albinism. I'm meant to use reading glasses when I'm on the computer, but I just increase the text size in my browser. Shh, don't tell my ophthalmologist. ;)

How is your vision, by the way? I knew a girl with 1A who was completely unable to drive and needed someone to take notes from the board for her, but I've met others with albinism who get by fine with just glasses or contacts.

Glad to hear that your vision has stabilized! I haven't heard of astigmatism being related to Albinism before, but I am definitely not an expert on the subject. I would be screwed if I couldn't hold things close to my face. Don't worry I won't tell your opthamologist about you not wearing glasses, as long as you don't tell mine that I don't always wear sunscreen.

I also make everything bigger on my computer. I have a MacBook Pro 17 inch, so that makes life a TON easier and combined with running Chrome for my internet I'm able to surf quite easily.

My vision is the norm for those with OCA. I have 20/100, as of my eye doctor appointment this week, acuity with glasses, so not so great. I also have nystagmus and slight strabismus, which contributes to the 20/100. The extreme sensitivity to light doesn't help either. Without glasses, my vision is at around 20/200. I don't do contacts. I have tried them, but my glasses help to filter out some of the light, which contacts don't. I feel like it is constantly a bright sunny day when I wear contacts. I'm glad that you are able to do so successfully though!

Although my vision isn't great, I do a lot to compensate and people are often surprised when they find out I have a visual impairment.

I do fine in classes because I am able to get my notes from just following the professor's lecture. As far as driving goes, I am currently in the very early stages of getting a provisional license. It is generally designed for older drivers; you can't drive on the freeway or at night (which is silly with OCA I can see better at night because of the reduced amount of light). Do you drive with a standard drivers license?

I have never met, even though it is online, anyone with your type of Albinism. I've met a ton of people with Albinism through NOAH. I think that it is truly fascinating how those with your type of Albinism gain pigment.

[BlondeAsTheyCome]

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[Spider Burps]

Glad to hear that your vision has stabilized! I haven't heard of astigmatism being related to Albinism before, but I am definitely not an expert on the subject. I would be screwed if I couldn't hold things close to my face. Don't worry I won't tell your opthamologist about you not wearing glasses, as long as you don't tell mine that I don't always wear sunscreen.

I also make everything bigger on my computer. I have a MacBook Pro 17 inch, so that makes life a TON easier and combined with running Chrome for my internet I'm able to surf quite easily.

My vision is the norm for those with OCA. I have 20/100, as of my eye doctor appointment this week, acuity with glasses, so not so great. I also have nystagmus and slight strabismus, which contributes to the 20/100. The extreme sensitivity to light doesn't help either. Without glasses, my vision is at around 20/200. I don't do contacts. I have tried them, but my glasses help to filter out some of the light, which contacts don't. I feel like it is constantly a bright sunny day when I wear contacts. I'm glad that you are able to do so successfully though!

Although my vision isn't great, I do a lot to compensate and people are often surprised when they find out I have a visual impairment.

I do fine in classes because I am able to get my notes from just following the professor's lecture. As far as driving goes, I am currently in the very early stages of getting a provisional license. It is generally designed for older drivers; you can't drive on the freeway or at night (which is silly with OCA I can see better at night because of the reduced amount of light). Do you drive with a standard drivers license?

I have never met, even though it is online, anyone with your type of Albinism. I've met a ton of people with Albinism through NOAH. I think that it is truly fascinating how those with your type of Albinism gain pigment.

Funny you mention never meeting an OCA1B person, because I've not either! Online I've met folks with OCA1A, OCA2 and several with OA, but I've never interacted with someone with the same type I have. I've always wondered if it somehow goes undiagnosed with how rarely I hear about it.

Regarding the glasses vs. contacts thing, it's funny you mention that glasses seem to be easier for you. I don't know if it's the style of frames I have or what, but my glasses always make me sooo dizzy (plus I feel like I belong in the ministry of silly walks when I wear them--curbs and stuff seem higher when I wear my glasses). I started wearing contacts when I was around 14 and now I just wear sunglasses when I'm not at home to avoid getting headaches and eye sunburns. I have a huge pair of aviators that cover my entire eye area and when I was in school, I was able to deal with the migraine-inducing fluorescent lights by wearing sunglasses, thanks to a doctor's note.

I was a member of the NOAH forums years ago and I got grumpy at them. When I first joined some members called me a poser, of sorts, after I posted a photo. Apparently they'd had some issues with people pretending to have albinism and there was this weird elitism going on with the OCA1A people claiming that I didn't have real albinism and that I was just some weird goth. I pointed out a few of my blotches of almost textbook 1B pigmentation and my super weird, definitely not dyed hair color (it's very light if you hold my hair straight up and look at it in the light, but laying my head it looks normal blonde) ; they stepped off and apologized, but it left me with a bad taste in my mouth. Last I read there, everyone was much nicer, though! Have you been to any of the conferences? I've considered going in the past, but, again, I'm worried that I'll be seen as not "albino enough" or something. Man, that's silly of me.

I do drive with a standard license, but my doctors told me my eyes may get worse in the next 10 years or so. Between that and my (very well controlled) seizures, I'm worried I'll end up surrendering my license eventually. Fortunately, we live near NYC so there's lots of public transit options, should I end up losing it! Is there no way you can get a note from your eye doctor saying you should be allowed to drive at night or are the license conditions not modifiable? I always make road trips at night because, like you said, it really is soooo much easier to read the signs and see the lines on the road; sometimes I have to wear my sunglasses at night because of all of the damned street lights, though!

Random, but have you found that a camera's built in red eye correction doesn't work on you? I recently got married and the photographer actually complained to me that he had to go back and manually edit out the red eye I got from the flash (I warned him it would happen, but he assured me the camera wouldn't cause red eye--which, duh, I should've realized was BS considering how our eyes work)! Before we even met, I told him I had albinism and yet the first thing he said to me on my wedding day was, "Wow! You're so pale! You didn't get a tan for your wedding?!" Face. Palm. Even better, he kept yelling at me for squinting outside, because he wouldn't let me wear my shades. "It's cloudy! There's no sun!" Yeah, Mr. Photographer, I was just squinting to make myself look like a jack ass in my wedding shots. :lol: (Also, holy crap, I read your post in Chatter regarding your wedding photographer's ass hattery. I'd be SEETHING.)

This is getting super off topic, so whenever you have enough posts PM, feel free to drop me a message (or, if you want, I can PM you my email address)! I always love to talk to others with albinism because it seems we always have so much more in common than just jacked up skin, hair and eyes.

ETA: Just got a PM asking if we wanted to do an "Ask someone with albinism" thread in the Ask Me Anything section. You up for it? :)

[formergothardite]

I am sad the blog is locked now because I am always craving blogs where there are normal Christians living normal lives... with a large family and homeschooling and all that. :) I found your blog refreshing :)

Is there any way a "fundy" can come on here and defend herself/her blog without "shitting on the rug"? I don't mean that in a snarky way I am honestly curious.

How exactly is she a "normal Christian"? They had lots of kids that they didn't seem to be able to afford or properly watch. Refused government help and had to constantly worry about where the next meal came from. The live in a house that is falling apart yet refuse to take any steps to fix it. If you can afford tanning and those workout video's you can afford to fix your toilet. And if the landlord refuses to let you and refuses to do it himself, you sue. You don't let your kids continue living like that.

There is a difference between defending your beliefs/child raising philosophies and calling people fat, lazy, jealous and bitter. If fundies could come on here and do the first using logic and common sense, it wouldn't be rug shitting.