PICS
In no particular order, my life over the past few weeks, captured with Instagram.
Stoya came to play D&D with us again. Izzy (http://www.athenelive.com/stream/221728/?apocalyptickitten) has been joining us via skype or G+ as well.
Kimberly Kane and Stoya after killing one of the giant skeleton ogres.
I'm still sickly. I get bored and take pictures of nothing while I'm in bed.
Like my grandmother's watch.
And how thin my skin is getting. (That's from the EDS.)
Just before sunset. Hollywood. Lemon trees and telephone wires.
My neighbour Angela's crazy living room wall decor.
It was my birthday. (Thank you all for the birthday wishes!)
We got my wheelchair working.
We went to the LA Times Festival of Books because ZakSmith's publisher was there and they wanted him to sign copies of his books. We ran into a fan who had a tattoo of one of Zak's drawings of me.
Mojito at Malo's. Yum.
My present from Zak.
It matches the ever-growing collection.
Birthday kisses from Charlotte Stokely. Will be working with her again soon!
Drunk Benny.
With Satine Pheonix, D23 and Kimberly Kane.
I dog sit for KK sometimes when she's on a long shoot.
Sleepy/sick face.
I love my bed. Which is good because I am forced to spend a lot of time in it.
Every day I am amazed and happy he is still alive.
My ass today.
I spend a lot of time with my xbox in Mass Effect 2 and 3-land.
But I am not online yet.
I had enough energy to bleach my hair the other day.
Kimberly Kane shows up at the oddest early morning hours (8am) and takes pictures of me.
I caught my heterochromia the other day. It's hard to get in a photo.
New jeans--second hand from Angela's new roommate Jaclyn.
Jaclyn also gave me this fantastic jacket! (KK took the photo.)
We go to the driving range. I watch the punks badly smack golf balls.
Angela, the roommate Nate Liquor, Kimberly Kane and ZakSmith way in the back.
ZakSmith's latest finished portrait. Of Charlotte Stockely.
Ta for now!
Oh!
And I found these great videos.
And overview.
An explanation of how disrupted autonomic processes like the cardiovascular system can affect sleep and pain issues and how to treat it.
A very good explanation of myofascial pain, the broader physical effect of the affected areas this doctor treats, in Ehlers-Danlos patients and how to deal with it in a physical therapy setting..
A very technical explanation of certain brain malformations that can occur in EDS patients but still understandable and helpful information. This related to certain kinds of base of skull and neck pain, as well as certain types of migraines and other problems expirenced by many EDS patients. When surgery is a good or bad idea and how to fix the issue.
Stoya came to play D&D with us again. Izzy (http://www.athenelive.com/stream/221728/?apocalyptickitten) has been joining us via skype or G+ as well.
Kimberly Kane and Stoya after killing one of the giant skeleton ogres.
I'm still sickly. I get bored and take pictures of nothing while I'm in bed.
Like my grandmother's watch.
And how thin my skin is getting. (That's from the EDS.)
Just before sunset. Hollywood. Lemon trees and telephone wires.
My neighbour Angela's crazy living room wall decor.
It was my birthday. (Thank you all for the birthday wishes!)
We got my wheelchair working.
We went to the LA Times Festival of Books because ZakSmith's publisher was there and they wanted him to sign copies of his books. We ran into a fan who had a tattoo of one of Zak's drawings of me.
Mojito at Malo's. Yum.
My present from Zak.
It matches the ever-growing collection.
Birthday kisses from Charlotte Stokely. Will be working with her again soon!
Drunk Benny.
With Satine Pheonix, D23 and Kimberly Kane.
I dog sit for KK sometimes when she's on a long shoot.
Sleepy/sick face.
I love my bed. Which is good because I am forced to spend a lot of time in it.
Every day I am amazed and happy he is still alive.
My ass today.
I spend a lot of time with my xbox in Mass Effect 2 and 3-land.
But I am not online yet.
I had enough energy to bleach my hair the other day.
Kimberly Kane shows up at the oddest early morning hours (8am) and takes pictures of me.
I caught my heterochromia the other day. It's hard to get in a photo.
New jeans--second hand from Angela's new roommate Jaclyn.
Jaclyn also gave me this fantastic jacket! (KK took the photo.)
We go to the driving range. I watch the punks badly smack golf balls.
Angela, the roommate Nate Liquor, Kimberly Kane and ZakSmith way in the back.
ZakSmith's latest finished portrait. Of Charlotte Stockely.
Ta for now!
Oh!
And I found these great videos.
And overview.
An explanation of how disrupted autonomic processes like the cardiovascular system can affect sleep and pain issues and how to treat it.
A very good explanation of myofascial pain, the broader physical effect of the affected areas this doctor treats, in Ehlers-Danlos patients and how to deal with it in a physical therapy setting..
A very technical explanation of certain brain malformations that can occur in EDS patients but still understandable and helpful information. This related to certain kinds of base of skull and neck pain, as well as certain types of migraines and other problems expirenced by many EDS patients. When surgery is a good or bad idea and how to fix the issue.
Instagram for my android, why yes, thank you:
(oh, @mandymorbid)
Sparky Sin Claire's amazing looking mutt Japhy.
Starla came over to update ZakSmith's tattoo of my diagnoses. Kimberly Kane stopped filming face sitting porn with our roommate to photograph it.
Kimberly's dog Sueno was afraid of the noise the tattoo machine made and hid under the couch.
Fight!
Kimberly likes my cupcake pillow.
ZakSmith likes to leave Kimberly notes about her favorite things.
We go out!
But of course I am stll not well and it does get boring.
This 'lil guy is still kicking.
Kimberly eats a lizard.
I still have a bum.
I get up early to go to doctor's appointments.
It's rained a lot. Zak and I and all the neighbours caught a terrible spring cold. We all drank a lot of tea.
Toes, dislocated Ehlers Danlos toes, and to compare, regular (I think) curled toes:
And life goes on. Zak, me, Kimberly, Sparky, and Nate Liquor--the roommate.
Today's no makeup pic and standard in the mirror pic:
Also Zak made this for Kimberly:
(oh, @mandymorbid)
Sparky Sin Claire's amazing looking mutt Japhy.
Starla came over to update ZakSmith's tattoo of my diagnoses. Kimberly Kane stopped filming face sitting porn with our roommate to photograph it.
Kimberly's dog Sueno was afraid of the noise the tattoo machine made and hid under the couch.
Fight!
Kimberly likes my cupcake pillow.
ZakSmith likes to leave Kimberly notes about her favorite things.
We go out!
But of course I am stll not well and it does get boring.
This 'lil guy is still kicking.
Kimberly eats a lizard.
I still have a bum.
I get up early to go to doctor's appointments.
It's rained a lot. Zak and I and all the neighbours caught a terrible spring cold. We all drank a lot of tea.
Toes, dislocated Ehlers Danlos toes, and to compare, regular (I think) curled toes:
And life goes on. Zak, me, Kimberly, Sparky, and Nate Liquor--the roommate.
Today's no makeup pic and standard in the mirror pic:
Also Zak made this for Kimberly:
I obviously didn't write the essay posted below but I agree with it.
(Related--
This article is great too. )
I know SGs on here with disabled kids. I worked with severely medically fragile and special needs kids myself. I am disabled and was sick (often seriously) as a kid too. Both my maternal grandparents have been disabled my whole life (my grandmother was born extremely premature and has cerebral palsy as a result, her needs as a child were so demanding that she was sent to a hospital convent to be raised there, she spent much of her youth unable to walk or having surgeries. She raised 4 kids and is now nearly 80.) My grandfather went blind when my mum was still a kid. I grew up with a little brother who was deaf but through surgery and speech therapy had overcome that issue by the first grade. My father was very seriously ill multiple times during my lifetime and we now know he shares the same genetic condition I was recently diagnosed with--possibly accounting for much of his past and continuing trouble.
I know illness and constant pain. In myself and others. In people I love. I know broken bodies. I've experienced and seen first hand the loss of dignity involved. And I know minds deemed different or unfit as well.
And all I ever saw in any of it in the end, was beauty and value and strength of character which you often don't get to see in "normal" people. And also often a certain kind of love that is open, innocent, communicative, full of trust and wonder. I am not using these words lightly. I am dead serious. There can be such a refreshing honesty to disabled people I've found as well. Just read the tattoo on the back of my neck. Which makes the way we who's needs can be so different are treated so much more deplorable.
When I taught and tutored special needs kids I learned--it came very easily to me but it doesn't for many people: YOU adapt to the child's individual needs. That's how you succeed. You do not try to bend or force the individual to the "normal","accepted","standard", usual way of doing things.
That doesn't just apply to people categorized as disabled or special needs. It applies to everyone. When you individualize your approach to education, healthcare, parenting, interpersonal relationships to a persons unique needs you will likely get healthier happier results.
That "usual" way--hasn't worked out for many people I know. Very very few in fact. It certainly did me more harm than good.
The medical community could do to learn that lesson as well as the rest of society in general. Current attitudes and practices do get tiresome, insulting, hurtful. Both physically and emotionally.
http://www.withalittlemoxie.com/
Tuesday, March 27, 2012
What the Cultural Value of Disability and Star Trek Have in Common
The Spirit Catches You and You Fall Down is a the story of a fiercely frustrating cultural clash, the crux of which lies the differing perceptions of one particular disability: epilepsy.
In the story, a Hmong refugee child living with her family in Central California has epilepsy, complete with grand mal seizures. Epilepsy, viewed within the Hmong culture, is a blessing, a gift from the gods, in which the spirit of the gods catches within the mortal soul and makes one fall. The Hmong family doesn't want to "cure" their daughter; the American social, health and protection workers do.
***
This story has been tickling the edges of my mind for a while in that 'what was it?' kind of tantalizing, trying-to-put-my-finger-on-it way. Like picking a sliver of eggshell out of a bowl of eggs, the tiny piece slipping once again just as I get a little closer.
And then, I got it. I got that little thing under my finger. I connected what it was that I wanted to remember: the cultural value of disability.
***
In this storm that has been raging regarding disability, prenatal testing and the economics of disability, case after case is made on the value of a life that is different - or the power of choice. The importance of accurate advice to those women who need and want it.
I agree with all that and what I also think is that nothing will fundamentally change so long as our culture continues to regard disability as nothing but a lodestone, occasionally paraded out as "inspiration".
We do not, as a society, look at individuals with disabilities as unique people with unique gifts. Not unique as that condescending "special"; rather, unique as each flower is unique, each star, blade of grass, hummingbird - unique as each and every human being is unique. No more, no less, and all worthy of delight in their respective ways.
***
As a society, we do not seek out what an individual with Down syndrome - or _______ fill in the blank disability - is going to offer us; we try and force that person into the societal box. We say, fix that, that and that and you'll be good for this, this and that. We assess, we measure, we say, fine you are at this level and so you are fit for x,y.z. Go make some coffee at Starbucks because you can handle repetition and have a skill-set suited to simple tasks.
We don't say: you dance like a wild mad woman and your joy brings joy so let us use you as a healer. Let us respect that you have this energy and power and can bring real good and positive change to the depressed, the unhappy, the people that need your light.
We don't say, you are Deaf - you see, observe and note: let us respect that you have the power to communicate without words, let us use your power and you will be our ambassador in situations in which we need to observe, see, and note.
We don't say, you are highly sensitive - your body is like the canary in the mine. Let us respect and honour your sensitivity and learn what needs changing in our environment. Something is wrong, is off, and you can help us understand what that is.
We don't say, you are depressed - and so many of us are depressed! What is happening within our collective whole - the framework in which we build this thing called 'culture' upon? We were not born with this kind of sorrow; something about the way we are choosing to live is affecting us negatively: let's find it. Change it. Live in different ways that do not cause us to become sad.
We don't look at the contribution of disability in and of itself, you see. We are not looking at disability and seeing it as an opportunity for growth, change, forward movement and advancement of our human race as a whole: we are looking at it like it's a problem. Something to be fixed. Broken bits of human flesh that need mending. We are trying to shove people that are especially unique into a mold that just does not fit, rather than looking at the mold and wondering how we can get rid of it, the mold.
Those of us with a child with a disability know that our children bring with them gifts, just as all children do. We clamour for attention - we want the world to know this truth.We say, 'hey! hey! look - look at my kid, look at my life! we are normal - I was wrong, so wrong, before disability came into my life!' and the outside world scoffs and thinks we are somehow trying to validate the fact that we have a child who is different, "she's making the best of a bad situation," they say. And we want them to know, 'no, no! REALLY! I am telling you the solid gold truth!"
Perhaps I am jaded, but while I think that jumping up and down and clamouring does more good than nothing, I have a hard time seeing that anything will truly change unless our collective perception of disability itself changes.
***
One last thought: Star Trek provided scientists with the inspiration to do more, try harder. They saw what was fantasy on TV in the time in which computers were as big as a room. Engineers were inspired to try and create cell phones, smaller computers, visual phones, automatically-opening doors - and they did.
They didn't see Star Trek as an "intergalactic" floating bucket of impossible dreams. They saw it as opportunity.
This is what I crave for us with disabilities: that disability be recognized as an opportunity for growth. That it be respected for contributing in valid ways to our society, in and of itself as the diverse thinking and experience that all people inherently bring contribute to a vastly richer human race.
(Related--
This article is great too. )
I know SGs on here with disabled kids. I worked with severely medically fragile and special needs kids myself. I am disabled and was sick (often seriously) as a kid too. Both my maternal grandparents have been disabled my whole life (my grandmother was born extremely premature and has cerebral palsy as a result, her needs as a child were so demanding that she was sent to a hospital convent to be raised there, she spent much of her youth unable to walk or having surgeries. She raised 4 kids and is now nearly 80.) My grandfather went blind when my mum was still a kid. I grew up with a little brother who was deaf but through surgery and speech therapy had overcome that issue by the first grade. My father was very seriously ill multiple times during my lifetime and we now know he shares the same genetic condition I was recently diagnosed with--possibly accounting for much of his past and continuing trouble.
I know illness and constant pain. In myself and others. In people I love. I know broken bodies. I've experienced and seen first hand the loss of dignity involved. And I know minds deemed different or unfit as well.
And all I ever saw in any of it in the end, was beauty and value and strength of character which you often don't get to see in "normal" people. And also often a certain kind of love that is open, innocent, communicative, full of trust and wonder. I am not using these words lightly. I am dead serious. There can be such a refreshing honesty to disabled people I've found as well. Just read the tattoo on the back of my neck. Which makes the way we who's needs can be so different are treated so much more deplorable.
When I taught and tutored special needs kids I learned--it came very easily to me but it doesn't for many people: YOU adapt to the child's individual needs. That's how you succeed. You do not try to bend or force the individual to the "normal","accepted","standard", usual way of doing things.
That doesn't just apply to people categorized as disabled or special needs. It applies to everyone. When you individualize your approach to education, healthcare, parenting, interpersonal relationships to a persons unique needs you will likely get healthier happier results.
That "usual" way--hasn't worked out for many people I know. Very very few in fact. It certainly did me more harm than good.
The medical community could do to learn that lesson as well as the rest of society in general. Current attitudes and practices do get tiresome, insulting, hurtful. Both physically and emotionally.
http://www.withalittlemoxie.com/
Tuesday, March 27, 2012
What the Cultural Value of Disability and Star Trek Have in Common
The Spirit Catches You and You Fall Down is a the story of a fiercely frustrating cultural clash, the crux of which lies the differing perceptions of one particular disability: epilepsy.
In the story, a Hmong refugee child living with her family in Central California has epilepsy, complete with grand mal seizures. Epilepsy, viewed within the Hmong culture, is a blessing, a gift from the gods, in which the spirit of the gods catches within the mortal soul and makes one fall. The Hmong family doesn't want to "cure" their daughter; the American social, health and protection workers do.
***
This story has been tickling the edges of my mind for a while in that 'what was it?' kind of tantalizing, trying-to-put-my-finger-on-it way. Like picking a sliver of eggshell out of a bowl of eggs, the tiny piece slipping once again just as I get a little closer.
And then, I got it. I got that little thing under my finger. I connected what it was that I wanted to remember: the cultural value of disability.
***
In this storm that has been raging regarding disability, prenatal testing and the economics of disability, case after case is made on the value of a life that is different - or the power of choice. The importance of accurate advice to those women who need and want it.
I agree with all that and what I also think is that nothing will fundamentally change so long as our culture continues to regard disability as nothing but a lodestone, occasionally paraded out as "inspiration".
We do not, as a society, look at individuals with disabilities as unique people with unique gifts. Not unique as that condescending "special"; rather, unique as each flower is unique, each star, blade of grass, hummingbird - unique as each and every human being is unique. No more, no less, and all worthy of delight in their respective ways.
***
As a society, we do not seek out what an individual with Down syndrome - or _______ fill in the blank disability - is going to offer us; we try and force that person into the societal box. We say, fix that, that and that and you'll be good for this, this and that. We assess, we measure, we say, fine you are at this level and so you are fit for x,y.z. Go make some coffee at Starbucks because you can handle repetition and have a skill-set suited to simple tasks.
We don't say: you dance like a wild mad woman and your joy brings joy so let us use you as a healer. Let us respect that you have this energy and power and can bring real good and positive change to the depressed, the unhappy, the people that need your light.
We don't say, you are Deaf - you see, observe and note: let us respect that you have the power to communicate without words, let us use your power and you will be our ambassador in situations in which we need to observe, see, and note.
We don't say, you are highly sensitive - your body is like the canary in the mine. Let us respect and honour your sensitivity and learn what needs changing in our environment. Something is wrong, is off, and you can help us understand what that is.
We don't say, you are depressed - and so many of us are depressed! What is happening within our collective whole - the framework in which we build this thing called 'culture' upon? We were not born with this kind of sorrow; something about the way we are choosing to live is affecting us negatively: let's find it. Change it. Live in different ways that do not cause us to become sad.
We don't look at the contribution of disability in and of itself, you see. We are not looking at disability and seeing it as an opportunity for growth, change, forward movement and advancement of our human race as a whole: we are looking at it like it's a problem. Something to be fixed. Broken bits of human flesh that need mending. We are trying to shove people that are especially unique into a mold that just does not fit, rather than looking at the mold and wondering how we can get rid of it, the mold.
Those of us with a child with a disability know that our children bring with them gifts, just as all children do. We clamour for attention - we want the world to know this truth.We say, 'hey! hey! look - look at my kid, look at my life! we are normal - I was wrong, so wrong, before disability came into my life!' and the outside world scoffs and thinks we are somehow trying to validate the fact that we have a child who is different, "she's making the best of a bad situation," they say. And we want them to know, 'no, no! REALLY! I am telling you the solid gold truth!"
Perhaps I am jaded, but while I think that jumping up and down and clamouring does more good than nothing, I have a hard time seeing that anything will truly change unless our collective perception of disability itself changes.
***
One last thought: Star Trek provided scientists with the inspiration to do more, try harder. They saw what was fantasy on TV in the time in which computers were as big as a room. Engineers were inspired to try and create cell phones, smaller computers, visual phones, automatically-opening doors - and they did.
They didn't see Star Trek as an "intergalactic" floating bucket of impossible dreams. They saw it as opportunity.
This is what I crave for us with disabilities: that disability be recognized as an opportunity for growth. That it be respected for contributing in valid ways to our society, in and of itself as the diverse thinking and experience that all people inherently bring contribute to a vastly richer human race.
This week I am ordering my wheelchair. It will be hot pink with pink spokes on the wheels and the seat will be black.
I am much weaker than we originally thought. On days when I am eventually stronger I will still need the braces to walk. I think I will even need to wear them in the chair.
Please vote for my set Princess that will be up in member review soon as the money from that set will help me afford my chair.
I spent Friday in the ER. My condition (the EDS and POTS) was ignored. The information I gave the doctors was ignored. My explanation that I had already signed a release of information form for the echocardiogram I had last week and that they should get the results was flat out refused. I have had serious POTS symptoms for 5 days, acute heart pain, chronic chest pain, difficulty breathing and pretty nasty nausea. Tomorrow morning first thing we are going to Cedars Sinai's ER. Would have gone last night or this morning but we were worried that the specialists I will need wouldn't be around on the weekend.
On April 10th I have an appointment with a whole TEAM of geneticists at Cedars. They'll be getting my Type IV EDS test out of the way along with other evaluations and stuff. I get 2-3 hours with this team minimum.
If you want to donate beyond helping get my set purchased I am taking paypal donations to help cover the cost of the chair and some of my other medical procedures. PM me if you want details. The chair itself is just over $2000.00 so far.
I am much weaker than we originally thought. On days when I am eventually stronger I will still need the braces to walk. I think I will even need to wear them in the chair.
Please vote for my set Princess that will be up in member review soon as the money from that set will help me afford my chair.
I spent Friday in the ER. My condition (the EDS and POTS) was ignored. The information I gave the doctors was ignored. My explanation that I had already signed a release of information form for the echocardiogram I had last week and that they should get the results was flat out refused. I have had serious POTS symptoms for 5 days, acute heart pain, chronic chest pain, difficulty breathing and pretty nasty nausea. Tomorrow morning first thing we are going to Cedars Sinai's ER. Would have gone last night or this morning but we were worried that the specialists I will need wouldn't be around on the weekend.
On April 10th I have an appointment with a whole TEAM of geneticists at Cedars. They'll be getting my Type IV EDS test out of the way along with other evaluations and stuff. I get 2-3 hours with this team minimum.
If you want to donate beyond helping get my set purchased I am taking paypal donations to help cover the cost of the chair and some of my other medical procedures. PM me if you want details. The chair itself is just over $2000.00 so far.
My darling 14 (or 14+) yr old blind Dandie Dinmont mix seems to be slowing down. He hates going down stairs, doesn't enjoy his walks so much anymore (which worked out well because I am so not up for long walks with the EDS) and I have to coax him to eat enough now and when he does want to eat a lot he usually vomits (or tries to, I am pretty good at distracting him until the heaving stops) afterwards. Today he even just vomited up water. He has incontinence issues and is so blind he's even walking into people standing still now. He doesn't want to play so much anymore either, but he still loves to cuddle and get treats. I think he has a touch of dementia on top of the blindness and deafness because he is getting lost in our apartment now and paces and paces and paces. My guess is we've got 6 months to a year with him max. I've witness my terriers aging before. We had one who died in his sleep at the ripe old age of 11 blind as a bat and chubby and stinky. But well loved.
I am looking to rescue/adopt a Pitbull or American Staffodrshire Terrier or large, strong (to help me with my stability issues getting up/standing) pit or bully type mix who has service training for working with people with disabilities after Drax passes on. I would love the help sooner but don't want to upset Drax at this stage of his life with a big change. (Drax has gotten defensive about large dogs lately as well.) I'm guessing finding a dog that needs to be re-homed or rescued with this kind of training will be a bit of a thing so let the search begin.
"Rare but strong together is the slogan of the 2012 International Rare Disease Day to be held on the rarest day in the calendar: 29th February. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets primarily the general public but it is also designed for patients and patient representatives, as well as politicians, public authorities, policy-makers, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases."
My disease occurs in 1 out of 5000 and 10% of the population are considered to be hypermobile it is still considered rare because it is so often misdiagnosed or goes undiagnosed. Help spread the word and raise awareness of rare and unusual conditions it really will help people suffer less. Ehlers Danlos Syndrome is so much more than being flexible and double jointed! There are many painful, dangerous, and debilitating co-occurring conditions. Not to mention the injuries, sprains, dislocations, broken bones, and widespread pain with any movement, pressure, strain on any muscle or joint. It is also progressive and I may end up in a wheelchair. There is no cure. Doctors do NOT know how to assess an EDS patient, any and all medical treatment must be different than standard procedures for non-EDS patients (even dental work). There is no medication and no real treatment. Treatment as far as it goes is "supportive" that includes physical therapy, braces to stabilize hyperextending, loose and damaged joints and wheelchairs and canes for when we get to the point where we cannot walk. I have been almost completely trapped in my house for slightly less than a year now and I would NOT have gotten a proper diagnosis if I didn't push and push and not give up and accept the apathy and ignorance and misdiagnoses pressed on me. I am hoping for some increased mobility and independence with braces for my legs and ankles and wrists that I am going to get today!
I have learned so much in the past few days!
My Hypermobility type EDS can cause secondary conditions like Postural Orthostatic Tachycardia Synndrome (low blood pressure, dizziness, fainting, fatigue, jumps in blood pressure from sitting to standing, anxiety like symptoms, irregular heart beat, cold extremities), Horton's Syndrome (a kind of cluster migraine condition) and Tracheobronchomalacia (TBM). (TBM is a dynamic collapse of the airways on expiration and can mimic severe, difficult to treat asthma.)
My whole life is being explained.
Also the old IBS diagnosis might be totally wrong due to the EDS making my digestive organs function differently (or rather not function at all).
There are so many things that can be disrupted internally when your body doesn't produce and use collagen properly! So much dysfunction and abnormality accounted for.
------------
Otherwise things are good. I am shooting a bunch of smut and erotica and fetish stuff with Kimberly Kane tomorrow. Yesterday was D&D day and even Izzy joined us via Skype. Today we are having turkey dinner because Kimberly is filming an eating fetish clip. I am planning how to customize my braces. And people have been donating to help me cover some of these new medical costs! And Stoya sent me a present though I was too sick to see her the day she was in town.
All in all a great week despite still not feeling much better.
My Hypermobility type EDS can cause secondary conditions like Postural Orthostatic Tachycardia Synndrome (low blood pressure, dizziness, fainting, fatigue, jumps in blood pressure from sitting to standing, anxiety like symptoms, irregular heart beat, cold extremities), Horton's Syndrome (a kind of cluster migraine condition) and Tracheobronchomalacia (TBM). (TBM is a dynamic collapse of the airways on expiration and can mimic severe, difficult to treat asthma.)
My whole life is being explained.
Also the old IBS diagnosis might be totally wrong due to the EDS making my digestive organs function differently (or rather not function at all).
There are so many things that can be disrupted internally when your body doesn't produce and use collagen properly! So much dysfunction and abnormality accounted for.
------------
Otherwise things are good. I am shooting a bunch of smut and erotica and fetish stuff with Kimberly Kane tomorrow. Yesterday was D&D day and even Izzy joined us via Skype. Today we are having turkey dinner because Kimberly is filming an eating fetish clip. I am planning how to customize my braces. And people have been donating to help me cover some of these new medical costs! And Stoya sent me a present though I was too sick to see her the day she was in town.
All in all a great week despite still not feeling much better.
