For Those who still follow me :)
Please go help? https://www.gofundme.com/diamedical
TEAL DEER so skim past if you're already sick of me and my gofundme. May is Lupus Awareness Month. So I'm gonna drop some awareness on you.
http://www.lupus.org/answe…/topic/frequently-asked-questions
a FAQ!
http://www.lupusny.org/about-lupus/lupus-links
a link full of more links.
So by now you've all seen this.
https://www.gofundme.com/diamedical
And I'm sure some of you are sick of seeing it (wow that hotel had yellow as fuck lighting.I could edit it or you can go to my photos, skim past the SL ones and see it going back years. Allan said (or I think it may have been Suzanne?) That in the photo I asked Julia to see if she could dig up, you can see it there too. In my HS Sr. Year photo, taken in 1989. At 16-17, in the late 80's I had no idea Lupus was a thing. Knowing that is is one now and that I have it, I am severely disappointed that I got NO cool werewolf powers with it and just some symptoms that are really just the crap end of vampire drawbacks. I'm ALWAYS Vit D deficient, no matter how much I take, I'm ALWAYS anemic as well as apparently me+iron=no oh yeah and sunlight. I can do like 5-10 min on a clear day, 15 on a cloudy day, ffs for all I know, having not tried it, I could probably get moon-burned if I stayed out long enough. I could if I could find it, post a photo I took with my webcam yesterday (so it's guaranteed to be horrible by default) THAT might show both my weight loss and the signs of the three physical things we /know/ for sure are happening with me. Most days I think I look corpse grey. Though that may all be in my head.*edit nope, can't find the damn thing. Skype's been doing that ALL week with me. So instead have one of what I look like when I sleep in (or have been up for 24 hours) with make up on, you can still see the rash, grrr. And my chubby face before I lost weight.
That photo on the go fund me and the one in my profile were taken the same day. One is with make up and one is without. (the with was taken in the AM so it's sunlight vs lamp light)
See the red across my nose, cheeks and chin. That's not sunburn or windburn, it fades a bit now and then but it is ALWAYS with me. It's called a Butterfly Rash or Mylar rash. To cover it, I use a light layer of green tinted foundation over it first, let it dry then add a bit of power and finish the rest of my face. Green on the color wheel is directly opposite red, thus it corrects the excess red. Mostly. It's not a lot of fun to deal with. Some days I feel like my joints are on fire and nothing helps. I take no narcotics as they've been tried years ago and just make me dizzy and in pain (I can do that myself, I don't need a pill ty)
I'm sitting here now to try to describe to you what life with chronic pain is like and I can't find the words. Not ones you'd understand. Not that you're stupid but that it's beyond words. You know those charts with the faces and numbers on them that say 'Pick one and tell us your pain level today"? They go from 1 which is no pain to 10 which is the worst pain you can imagine (I call it the please just kill me level) There's even a photo of one attached. Unlike most photos of me, there's smiles on some of the yellow faces on the pain chart. Lupus varies, some days I'm a 2 to 4, some I've hit 10. (that is hell btw)
With the added Fibromyalgia and Chronic Fatigue, my GOOD days are in the 5 area and the normal hovers at 7-8, 9+ means I'm probably going to sleep all day because I can't do anything else. Those of you on here with Chronic pain, you already know all of this.
Lupus is an invisible illness, hard to pinpoint, and hard to see. (as are many others, google invisible illness some time. "But you don't look sick is a common refrain" (there's a website for that btw) no, because we hide it, we pretend, we wait til we're home and safe to cry and because it attacks the internal organs, there's nothing but the mylar rash and the either round perfectly circular burns that UV and sometimes just heat will cause to see or the odd reddish dots that burn and spring up along my exposed skin.
(I should honestly one day save up for a uv blocking gothy parasol I think I have 60c in my floor! That's a start.)
In the past 24 hours, I've had some pretty horrible things said to me about this go-fund-me. "Get rid of your pets" (that would save at most 60.00 a month, should we turn off the water and power and internet too to please that person? ) "Don't try to use guilt as a way to garner sympathy" was part of one said publicly in a group on Skype. One that will ALWAYS get me angry now, is "don't lie and try to hide behind an illness that people REALLY do have, and just be a fat lazy bitch" was tossed at me. I was told to sell everything but my bed, bedding and clothes I wear including what I think to be my grandmother's wedding ring set, (which until I verify that or not you won't pry out of my dead hands, it's all I have left of her.) and anything of ANY possible value that either my mother left behind or I own, like the computer I'm currently using, my phone (which is actually not mine, it's loaned to me by the father or the person across the hall that this whole thing is actually about, so I'd have one if I needed it. Sick people do, frequently) The TV, my whole 36.00 when it was brand new kindle fire ANYTHING. Sell it all bitch." I believe were the last words said to me before I blocked and deleted them on Skype.
I could do that. I'd probably get about 130.00 for the lot of it, if I was lucky. I was told I am faking it. I'm not, would anyone like several hundred pages of medical files sent to them? I'll scan them and email them with my personal info (SS and address) blacked out, name and address intact as well as the doctors names, who won't tell you anything because you're not either of my two medical proxies. Suzy is and Allan is. I live with one and hope to marry the other, they need to be able to talk to my doctors. This list could go on and on and on. By the way, best way to know how to clean up that pesky Skype list or (if I drop the link there) over long SL friends list. Make a go fund me for a legit reason. The compassion less jerks either out themselves on their own and YOU can remove them, OR they do it themselves. so there's a bright side. The move from FL to SC meant all new doctors and ALL the same tests again. so now not only do I have Lupus, and the others, I've tested positive for it now about 9 times. (really, I'm faking it and just like taking a pill with no side effects, doesn't get you stoned BUT could make you go blind in time if you build up toxic levels in your blood stream! Cause self induced Macular Degeneration is fun right?) We won't go in to the causes or the reasons for why I'm seeing a therapist and a shrink beyond early childhood trauma (think 18mos as a starting age) that led to childhood, then teen then adult trauma all of which gave me PTSD, which brings it's friends with it. If you REALLY want the gory details of my growing up and then grown up fuck ups, wait for the book (or you know, just ask me, I'll share, I almost can't NOT share once someone seems concerned) Like of all the symptoms of Lupus, the one I worry the most about is Alopecia , hair loss, because mine's thin enough tyvm. CLING TINY THIN HAIRS CLING!
Anyway.
the point of this (Christ why am I such a long writer?)
Let me drop some math on you (I'm rounding up, it's after midnight and I'm exhausted (I'm always exhausted but you know what I mean.)
This is per month by the way.
Insurance plan that will actually treat all of this: $416.00
Prescriptions (this number is prone to go up ): $260.00
All My Doctors all have a 20.00 co-pay & I see 5:$100.00
Specialists(Physical Therapy 1x a week @ 35.00 $140.00
Therapist who helps me fight my urge to give up :$60.00
(I actually think we're underpaying you Denise by 5 bucks)
Now add all that up. you get 960.00 a month to just keep me alive. This isn't counting food, though a: I pay for my own(some of you will say "no my taxes pay to feed you and I'll say fuck off, I worked for a large bit of my life and I hope you never need help jerk) and b: I eat very little anyway anymore. (seriously I've lost like around 140 lbs in the past year)
I try to stagger my prescriptions so they don't all hit at once, because that sucks.
Now, we know that to operate a Sick Julia it's : $960.00 a month
so we multiply that by 12 (cause 12 months in a year)
Making the yearly cost of operating a Sick Julia equal out to:
$11,520 a year. As I'm bed ridden till further in to PT, because I faint at random. I'm a really expensive pet lump that never shuts up( and is sometimes funny, so there's that going for me) (seriously, I don't. ask any of my friends or remaining family)
Suzanne has been doing this ALONE for almost 7 years, so we'll call it 7 as I don't remember the exact date she started giving so much of a damn, I'm just grateful she did. We're going to take that
$11,520 a year and multiply it by 7 which gives us 80,640 over 7 years that's she's done mostly absolutely on her own. (I have no family than can really help on this level, most who could have are dead, one seems to react to me as if either he or I already were. Hi Daddy! Look still here, really, isn't that amazing? *sighs* I actually don't even know if he knows I'm sick. I've told him, but that doesn't mean that not unlike my deceased mother, he was listening)
So if what we fear happening happens.
She won't be able to do this anymore and then I go on a deathwatch timer. Might take 6 months, might take 6 years, I might (though I doubt it,) outlive you all. At the rate my muscles are giving out due to atrophy, it might take a week, because if I don't get them strong again, I'm going to faint and hit something that does more than bruise my skin and my ego.
Have I filed for disability, yes twice now. Once in 2009 and once not even a month ago well I am letting the lawyer in this time and I give them info, and permissions and they deal with the rest. This time I might not even have to see the the SS Doctors as I have A LOT of my own with documentation and several people who've witnessed the issues first hand. (if it's more than 7 years since your application was denied, you have to file like it's new, which is tedious)
And still, though I keep having to go 'I' all over this. It is not and never was about ME.
It's about helping my best friend not beat herself up over this.
To help her not feel like she failed me.
I was never her burden to take on.
She chose to out of friendship and love.
Had she not chosen to do so, I'd not be here now to drive you all crazy.
I will never be able to pay her back in any way I can think of other than asking for help. And I didn't even ask for a whole year's worth of cost. For the curious donations go to my paypal which would go to me then to her bank account to be used to deal with this.
Also my paypal : diaphoni@gmail.com if you're more comfortable with it that way.
or you could buy make up from me, and help me earn some of this.https://www.youniqueproducts.com/Dia They're good quality, smell and feel good (I hate foundation smell face all day) and as I go up in levels and build a down line, I get more commission. Thus increasing my pay. You can even host a webparty and get host gifts.https://www.youniqueproducts.com/Dia/account/rewardschart
I don't invade your house, unless you want me to. We can have it in here or even via chat (typed and vocal) in Second Life.
I don't want to be a pet lump anymore, I don't really even want disability that long. I just want part of my life back and if you'd have ever told me I'd miss a cubicle farm, I'd have called you a liar but I do. The whole purpose of this, everything that's she's doing and has done is to keep me going so I can get strong again and go and do what I can to be a productive member of society again.
I don't know how to finish this other than to tell Suzy I love her to bit and to ask you guys to, if you can't help, spread it everywhere. to everyone, even if they have no idea who I am.
This is all I know to do, right now, to help make things easier on her.
Lupus never goes away. But I can fight it and you can help;
TEAL DEER so skim past if you're already sick of me and my gofundme. May is Lupus Awareness Month. So I'm gonna drop some awareness on you.
http://www.lupus.org/answe…/topic/frequently-asked-questions
a FAQ!
http://www.lupusny.org/about-lupus/lupus-links
a link full of more links.
So by now you've all seen this.
https://www.gofundme.com/diamedical
And I'm sure some of you are sick of seeing it (wow that hotel had yellow as fuck lighting.I could edit it or you can go to my photos, skim past the SL ones and see it going back years. Allan said (or I think it may have been Suzanne?) That in the photo I asked Julia to see if she could dig up, you can see it there too. In my HS Sr. Year photo, taken in 1989. At 16-17, in the late 80's I had no idea Lupus was a thing. Knowing that is is one now and that I have it, I am severely disappointed that I got NO cool werewolf powers with it and just some symptoms that are really just the crap end of vampire drawbacks. I'm ALWAYS Vit D deficient, no matter how much I take, I'm ALWAYS anemic as well as apparently me+iron=no oh yeah and sunlight. I can do like 5-10 min on a clear day, 15 on a cloudy day, ffs for all I know, having not tried it, I could probably get moon-burned if I stayed out long enough. I could if I could find it, post a photo I took with my webcam yesterday (so it's guaranteed to be horrible by default) THAT might show both my weight loss and the signs of the three physical things we /know/ for sure are happening with me. Most days I think I look corpse grey. Though that may all be in my head.*edit nope, can't find the damn thing. Skype's been doing that ALL week with me. So instead have one of what I look like when I sleep in (or have been up for 24 hours) with make up on, you can still see the rash, grrr. And my chubby face before I lost weight.
That photo on the go fund me and the one in my profile were taken the same day. One is with make up and one is without. (the with was taken in the AM so it's sunlight vs lamp light)
See the red across my nose, cheeks and chin. That's not sunburn or windburn, it fades a bit now and then but it is ALWAYS with me. It's called a Butterfly Rash or Mylar rash. To cover it, I use a light layer of green tinted foundation over it first, let it dry then add a bit of power and finish the rest of my face. Green on the color wheel is directly opposite red, thus it corrects the excess red. Mostly. It's not a lot of fun to deal with. Some days I feel like my joints are on fire and nothing helps. I take no narcotics as they've been tried years ago and just make me dizzy and in pain (I can do that myself, I don't need a pill ty)
I'm sitting here now to try to describe to you what life with chronic pain is like and I can't find the words. Not ones you'd understand. Not that you're stupid but that it's beyond words. You know those charts with the faces and numbers on them that say 'Pick one and tell us your pain level today"? They go from 1 which is no pain to 10 which is the worst pain you can imagine (I call it the please just kill me level) There's even a photo of one attached. Unlike most photos of me, there's smiles on some of the yellow faces on the pain chart. Lupus varies, some days I'm a 2 to 4, some I've hit 10. (that is hell btw)
With the added Fibromyalgia and Chronic Fatigue, my GOOD days are in the 5 area and the normal hovers at 7-8, 9+ means I'm probably going to sleep all day because I can't do anything else. Those of you on here with Chronic pain, you already know all of this.
Lupus is an invisible illness, hard to pinpoint, and hard to see. (as are many others, google invisible illness some time. "But you don't look sick is a common refrain" (there's a website for that btw) no, because we hide it, we pretend, we wait til we're home and safe to cry and because it attacks the internal organs, there's nothing but the mylar rash and the either round perfectly circular burns that UV and sometimes just heat will cause to see or the odd reddish dots that burn and spring up along my exposed skin.
(I should honestly one day save up for a uv blocking gothy parasol I think I have 60c in my floor! That's a start.)
In the past 24 hours, I've had some pretty horrible things said to me about this go-fund-me. "Get rid of your pets" (that would save at most 60.00 a month, should we turn off the water and power and internet too to please that person? ) "Don't try to use guilt as a way to garner sympathy" was part of one said publicly in a group on Skype. One that will ALWAYS get me angry now, is "don't lie and try to hide behind an illness that people REALLY do have, and just be a fat lazy bitch" was tossed at me. I was told to sell everything but my bed, bedding and clothes I wear including what I think to be my grandmother's wedding ring set, (which until I verify that or not you won't pry out of my dead hands, it's all I have left of her.) and anything of ANY possible value that either my mother left behind or I own, like the computer I'm currently using, my phone (which is actually not mine, it's loaned to me by the father or the person across the hall that this whole thing is actually about, so I'd have one if I needed it. Sick people do, frequently) The TV, my whole 36.00 when it was brand new kindle fire ANYTHING. Sell it all bitch." I believe were the last words said to me before I blocked and deleted them on Skype.
I could do that. I'd probably get about 130.00 for the lot of it, if I was lucky. I was told I am faking it. I'm not, would anyone like several hundred pages of medical files sent to them? I'll scan them and email them with my personal info (SS and address) blacked out, name and address intact as well as the doctors names, who won't tell you anything because you're not either of my two medical proxies. Suzy is and Allan is. I live with one and hope to marry the other, they need to be able to talk to my doctors. This list could go on and on and on. By the way, best way to know how to clean up that pesky Skype list or (if I drop the link there) over long SL friends list. Make a go fund me for a legit reason. The compassion less jerks either out themselves on their own and YOU can remove them, OR they do it themselves. so there's a bright side. The move from FL to SC meant all new doctors and ALL the same tests again. so now not only do I have Lupus, and the others, I've tested positive for it now about 9 times. (really, I'm faking it and just like taking a pill with no side effects, doesn't get you stoned BUT could make you go blind in time if you build up toxic levels in your blood stream! Cause self induced Macular Degeneration is fun right?) We won't go in to the causes or the reasons for why I'm seeing a therapist and a shrink beyond early childhood trauma (think 18mos as a starting age) that led to childhood, then teen then adult trauma all of which gave me PTSD, which brings it's friends with it. If you REALLY want the gory details of my growing up and then grown up fuck ups, wait for the book (or you know, just ask me, I'll share, I almost can't NOT share once someone seems concerned) Like of all the symptoms of Lupus, the one I worry the most about is Alopecia , hair loss, because mine's thin enough tyvm. CLING TINY THIN HAIRS CLING!
Anyway.
the point of this (Christ why am I such a long writer?)
Let me drop some math on you (I'm rounding up, it's after midnight and I'm exhausted (I'm always exhausted but you know what I mean.)
This is per month by the way.
Insurance plan that will actually treat all of this: $416.00
Prescriptions (this number is prone to go up ): $260.00
All My Doctors all have a 20.00 co-pay & I see 5:$100.00
Specialists(Physical Therapy 1x a week @ 35.00 $140.00
Therapist who helps me fight my urge to give up :$60.00
(I actually think we're underpaying you Denise by 5 bucks)
Now add all that up. you get 960.00 a month to just keep me alive. This isn't counting food, though a: I pay for my own(some of you will say "no my taxes pay to feed you and I'll say fuck off, I worked for a large bit of my life and I hope you never need help jerk) and b: I eat very little anyway anymore. (seriously I've lost like around 140 lbs in the past year)
I try to stagger my prescriptions so they don't all hit at once, because that sucks.
Now, we know that to operate a Sick Julia it's : $960.00 a month
so we multiply that by 12 (cause 12 months in a year)
Making the yearly cost of operating a Sick Julia equal out to:
$11,520 a year. As I'm bed ridden till further in to PT, because I faint at random. I'm a really expensive pet lump that never shuts up( and is sometimes funny, so there's that going for me) (seriously, I don't. ask any of my friends or remaining family)
Suzanne has been doing this ALONE for almost 7 years, so we'll call it 7 as I don't remember the exact date she started giving so much of a damn, I'm just grateful she did. We're going to take that
$11,520 a year and multiply it by 7 which gives us 80,640 over 7 years that's she's done mostly absolutely on her own. (I have no family than can really help on this level, most who could have are dead, one seems to react to me as if either he or I already were. Hi Daddy! Look still here, really, isn't that amazing? *sighs* I actually don't even know if he knows I'm sick. I've told him, but that doesn't mean that not unlike my deceased mother, he was listening)
So if what we fear happening happens.
She won't be able to do this anymore and then I go on a deathwatch timer. Might take 6 months, might take 6 years, I might (though I doubt it,) outlive you all. At the rate my muscles are giving out due to atrophy, it might take a week, because if I don't get them strong again, I'm going to faint and hit something that does more than bruise my skin and my ego.
Have I filed for disability, yes twice now. Once in 2009 and once not even a month ago well I am letting the lawyer in this time and I give them info, and permissions and they deal with the rest. This time I might not even have to see the the SS Doctors as I have A LOT of my own with documentation and several people who've witnessed the issues first hand. (if it's more than 7 years since your application was denied, you have to file like it's new, which is tedious)
And still, though I keep having to go 'I' all over this. It is not and never was about ME.
It's about helping my best friend not beat herself up over this.
To help her not feel like she failed me.
I was never her burden to take on.
She chose to out of friendship and love.
Had she not chosen to do so, I'd not be here now to drive you all crazy.
I will never be able to pay her back in any way I can think of other than asking for help. And I didn't even ask for a whole year's worth of cost. For the curious donations go to my paypal which would go to me then to her bank account to be used to deal with this.
Also my paypal : diaphoni@gmail.com if you're more comfortable with it that way.
or you could buy make up from me, and help me earn some of this.https://www.youniqueproducts.com/Dia They're good quality, smell and feel good (I hate foundation smell face all day) and as I go up in levels and build a down line, I get more commission. Thus increasing my pay. You can even host a webparty and get host gifts.https://www.youniqueproducts.com/Dia/account/rewardschart
I don't invade your house, unless you want me to. We can have it in here or even via chat (typed and vocal) in Second Life.
I don't want to be a pet lump anymore, I don't really even want disability that long. I just want part of my life back and if you'd have ever told me I'd miss a cubicle farm, I'd have called you a liar but I do. The whole purpose of this, everything that's she's doing and has done is to keep me going so I can get strong again and go and do what I can to be a productive member of society again.
I don't know how to finish this other than to tell Suzy I love her to bit and to ask you guys to, if you can't help, spread it everywhere. to everyone, even if they have no idea who I am.
This is all I know to do, right now, to help make things easier on her.
Lupus never goes away. But I can fight it and you can help;