What happened to "Harm none?"
Donation protected
My name is Melody.
Today I am doing something that is more difficult than you can possibly know. I'm asking for help.
I am not only doing this because after 42 years of "bad medicine", I sincerely can't live like this anymore. I am also, and more importantly, doing this for my amazing daughter.
I have been sick all my life. misdiagnosed, physically, mentally, emotionally and even sexually abused by most of the doctors and nurses I have had to deal with over and over.
These "Caregivers" have dismissed my complaints and treated me like an over dramatic, attention seeking child, not seeing obvious symptoms of a potentially fatal disorder.
Finally, I have been given a diagnosis that explains a good part of my daily pain and the degeneration of my health.
I have been diagnosed with Ehlers-Danlos. A genetic connective tissue disorder that affects the connective tissues that support the muscles, skin, bones, blood vessels, and many other organs and tissues.
This causes lifelong chronic pain, chronic dislocation of joints, multiple hernias and complications with the surgeries to correct them. And complications with healing. I have already had one surgery to repair a hernia. A supposedly easy surgery to heal from with minimal pain. It took three years for the pain where they cut into my muscle wall to stop hurting. That was five years ago and I just re-injured some abdominal muscles and tore some ligaments. Probably reopening finally healed hernia. I did this by lifting a very small shelf.
This syndrome has almost destroyed my life. But the worst part of this has been the time that has been stolen from my daughter. Taken by the sadism and prejudices of the people that I have gone to in absolute desperation dismissing me with assumptions that actually map out this illness for them.
Some of the very easily seen symptoms I have, like hyperextending my knees when I stand, can be caught by someone just taking an actual look at me for 30 seconds.
Also, I am ultra pale. Translucent in some places. Just a map of veins.
I am always covered head to toe in bruises. Because my ankle will dislocate as usual and I'll go tumbling down stairs.
Or, I'll trip over literally nothing and break something, which has happened.
There is a saying about people with this. "We trip over the pattern in the carpet". It's funny, but sadly true as well.
My skin doesn't scar normally. It unravels. They call them cigarette paper scars.
Also, my skin is incredibly delicate and cuts or an abrasion will suddenly pop up for no reason. Or if I lean on an elbow for more than 10 min it looks broken. It swells and turns a million colors.
If I come in contact with something sharp my skin opens up like butter and the stitches rip through. It also has a strange almost velvet texture.
I have pain in my joints that radiates outward down my limbs every day, all day. And I hyperextend everything. In fact, I am a natural contortionist. But that also means that my back goes out at least once a month because the spine is just a series of joints. So one slips and I'm in bed for a week.
This is why I am so angry. Every single one of these things, along with a lot more, are obvious signs of this syndrome. Along with scoliosis that I had as a child. The "knock knees" which were just hyperextended. And the most mind numbing growing pains I had into my early teens.
Then add multiple surgeries with healing complications. Problems with digestion, oral issues, thyroid issues, you name it. I have every symptom except a ruptured uterus when I was pregnant.
On top of this, I have three seizure disorders, Fibromyalgia, Epstein bar, and a mile long list of allergies to everything from foods to my own hair.
Strangely, this is the only thing that has actually helped me give some doctors the benefit of the doubt. I have conflicting illnesses that aren't usually seen together. And have been almost untreatable due to that. They fight each other. A medication for one illness is bad for another, or I my bizarre chemistry reacts oppositely to a medication.
So in that, I understand. How do you treat someone like me? I have no idea. But the doctors at the Mayo clinic do.
This is why I'm doing this. At this point, I believe it's my last resort. Otherwise very soon I will be bedridden or in a wheelchair.
I just want a chance to have a few years of normalcy with my amazing daughter.
I will put a link up to the Mayo clinics section on treating Ehlers-Danlos. Please take a few minutes to even just read over the different types of this condition. I have to live with it forever. But they will at least take me seriously and help.
Also, like most people, I do not have coverage that would pay for The Mayo. So it will be out of pocket. Or a sliding scale.
When you get a pittance from disability to live on every month, and one hernia surgery is 18k, this is very daunting.
I am really, really scared.
I'm scared that I'll get out of bed one morning and my heart will tear open. Or my ankle will dislocate as usual but I'll be on a long flight of steps and I'll break my back.
This is a nerve-racking existence. And I am missing life. And my daughter's life. And that will kill me faster than all the other issues I have put together.
And by the way, I haven't even mentioned everything I have and deal with. I think this is enough to give you a snapshot of my daily existence.
I put up a donation amount of $8,000.00.
This is the absolute lowest estimate I could think of. I'm sure after I actually get to speak to someone it will increase. But if you decide to give anything, I thank you from the bottom of my heart. I know how little everyone has right now. I know it's hand to mouth for most people. So please believe that the value of a dollar from someone toward my health is really priceless.
Even if you can't donate but you have read my whole story, I thank you for your time.
(This is the daughter I live for)
(My gorgeous kiddo and I)
Link to EhlersDanlos.org... this will give you details on the different types. I have at least a few that overlap...
http://www.ehlersdanlosnetwork.org/typesofehlersdanlos.html
Link to the Mayo Clinic Ehlers-Danlos site...
http://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/basics/definition/con-20033656
Thank you all so much. I wish you health and happiness,
Melody Cross
Today I am doing something that is more difficult than you can possibly know. I'm asking for help.
I am not only doing this because after 42 years of "bad medicine", I sincerely can't live like this anymore. I am also, and more importantly, doing this for my amazing daughter.
I have been sick all my life. misdiagnosed, physically, mentally, emotionally and even sexually abused by most of the doctors and nurses I have had to deal with over and over.
These "Caregivers" have dismissed my complaints and treated me like an over dramatic, attention seeking child, not seeing obvious symptoms of a potentially fatal disorder.
Finally, I have been given a diagnosis that explains a good part of my daily pain and the degeneration of my health.
I have been diagnosed with Ehlers-Danlos. A genetic connective tissue disorder that affects the connective tissues that support the muscles, skin, bones, blood vessels, and many other organs and tissues.
This causes lifelong chronic pain, chronic dislocation of joints, multiple hernias and complications with the surgeries to correct them. And complications with healing. I have already had one surgery to repair a hernia. A supposedly easy surgery to heal from with minimal pain. It took three years for the pain where they cut into my muscle wall to stop hurting. That was five years ago and I just re-injured some abdominal muscles and tore some ligaments. Probably reopening finally healed hernia. I did this by lifting a very small shelf.
This syndrome has almost destroyed my life. But the worst part of this has been the time that has been stolen from my daughter. Taken by the sadism and prejudices of the people that I have gone to in absolute desperation dismissing me with assumptions that actually map out this illness for them.
Some of the very easily seen symptoms I have, like hyperextending my knees when I stand, can be caught by someone just taking an actual look at me for 30 seconds.
Also, I am ultra pale. Translucent in some places. Just a map of veins.
I am always covered head to toe in bruises. Because my ankle will dislocate as usual and I'll go tumbling down stairs.
Or, I'll trip over literally nothing and break something, which has happened.
There is a saying about people with this. "We trip over the pattern in the carpet". It's funny, but sadly true as well.
My skin doesn't scar normally. It unravels. They call them cigarette paper scars.
Also, my skin is incredibly delicate and cuts or an abrasion will suddenly pop up for no reason. Or if I lean on an elbow for more than 10 min it looks broken. It swells and turns a million colors.
If I come in contact with something sharp my skin opens up like butter and the stitches rip through. It also has a strange almost velvet texture.
I have pain in my joints that radiates outward down my limbs every day, all day. And I hyperextend everything. In fact, I am a natural contortionist. But that also means that my back goes out at least once a month because the spine is just a series of joints. So one slips and I'm in bed for a week.
This is why I am so angry. Every single one of these things, along with a lot more, are obvious signs of this syndrome. Along with scoliosis that I had as a child. The "knock knees" which were just hyperextended. And the most mind numbing growing pains I had into my early teens.
Then add multiple surgeries with healing complications. Problems with digestion, oral issues, thyroid issues, you name it. I have every symptom except a ruptured uterus when I was pregnant.
On top of this, I have three seizure disorders, Fibromyalgia, Epstein bar, and a mile long list of allergies to everything from foods to my own hair.
Strangely, this is the only thing that has actually helped me give some doctors the benefit of the doubt. I have conflicting illnesses that aren't usually seen together. And have been almost untreatable due to that. They fight each other. A medication for one illness is bad for another, or I my bizarre chemistry reacts oppositely to a medication.
So in that, I understand. How do you treat someone like me? I have no idea. But the doctors at the Mayo clinic do.
This is why I'm doing this. At this point, I believe it's my last resort. Otherwise very soon I will be bedridden or in a wheelchair.
I just want a chance to have a few years of normalcy with my amazing daughter.
I will put a link up to the Mayo clinics section on treating Ehlers-Danlos. Please take a few minutes to even just read over the different types of this condition. I have to live with it forever. But they will at least take me seriously and help.
Also, like most people, I do not have coverage that would pay for The Mayo. So it will be out of pocket. Or a sliding scale.
When you get a pittance from disability to live on every month, and one hernia surgery is 18k, this is very daunting.
I am really, really scared.
I'm scared that I'll get out of bed one morning and my heart will tear open. Or my ankle will dislocate as usual but I'll be on a long flight of steps and I'll break my back.
This is a nerve-racking existence. And I am missing life. And my daughter's life. And that will kill me faster than all the other issues I have put together.
And by the way, I haven't even mentioned everything I have and deal with. I think this is enough to give you a snapshot of my daily existence.
I put up a donation amount of $8,000.00.
This is the absolute lowest estimate I could think of. I'm sure after I actually get to speak to someone it will increase. But if you decide to give anything, I thank you from the bottom of my heart. I know how little everyone has right now. I know it's hand to mouth for most people. So please believe that the value of a dollar from someone toward my health is really priceless.
Even if you can't donate but you have read my whole story, I thank you for your time.
(This is the daughter I live for)
(My gorgeous kiddo and I)
Link to EhlersDanlos.org... this will give you details on the different types. I have at least a few that overlap...
http://www.ehlersdanlosnetwork.org/typesofehlersdanlos.html
Link to the Mayo Clinic Ehlers-Danlos site...
http://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/basics/definition/con-20033656
Thank you all so much. I wish you health and happiness,
Melody Cross
Organizer
Melody Cross
Organizer
Albuquerque, NM
