Pledge for Live To Dream
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Dear friends, supporters, readers:
My name is Natalie Marie-Rose Guedes, but my friends and family call me "Rose." I'm a 32 year old mom, wife, music artist and producer. I like to learn, am creative, and love to cook (when I can.) I'm an advocate and chronic illness warrior. I live in Victoria B.C. I have two wonderful boys, ages 10 and 12, whom I love very much.
This is really hard, but my situation has become serious. I have developed a serious complication of Ehlers-Danlos Syndrome (EDS) called AAI or atlantoaxial instability, and c3-c5 instability (in my neck.) EDS is a very unusual connective tissue disorder which causes the body's collagen to break down, and this causes many problems in the body which are disabling, dangerous and incredibly painful. However, there's a lack of awareness, resources and care for EDS in many areas of the world, including where I live. It's a very serious ethical problem for people sick and suffering with EDS (more about below.)
I'm very excited about having been able to, against all odds, compose, co-produce and release my music album last year. I plan to continue pursing and promoting it and it's overall message theme of struggle and hope (which many can relate to!) to the best of my abilities. I want to share this music with the world! I know many will (and already do) enjoy it! I offer my debut full music album Live To Dream , as a gift to those able to pledge 8.00 or more (the albums' current price on Itunes, bandcamp, etc.)
Anything helps! Especially sharing. If my music could reach about four thousand people who liked and supported it, and would pledge for it, even just at it's original price, I could make my goal!This also gets the music and it's message out there to many people - which also means a lot to me because that is a life goal. I really hope for my message, campaign and music to reach many new people. If I'm able to make my goal here on go fund me, I will send all pledgers a special Thank You gift which is a special edition hard copy of the CD (pictured below) and a signed thank you 'golden apple' postcard. My goal amount is set to cover the specialized surgery I need and specialized medical care surrounding that. (more about below)
If you're unable to pledge for Live To Dream at this time, I understand. However, if you support me, please consider sharing my campaign with your social circles. Lots of sharing is important as it can cause a 'ripple affect' reaching many social circles and onward! My life depends on the success of my campaign and/or music content, in more ways than one, because I want to my message to get out there for awareness etc. I need help to share it out there and would very much appreciate this, because these days it is getting something 'out there' (even if it might be good and genuine) can be very difficult. I suggest hashtagging #pledgeforlivetodream #RosesLife #RepairRose #livetodreamalbum on Twitter and instagram, as well.
Also if you want to support me via pledge, but the music is not your personal taste, provide me with another email of someone who you know will enjoy it, and I will send it to them as a gift on your behalf! *note: if you cannot use the payment methods used here and you want to pledge another way please contact me at [email redacted] .. I will add all alternate and offline donations to the fund. (I will also add any profits from upcoming music merch to the fund.)
Reward/Gift for pledging:
Immediate (8 dollars or greater): Digital download of both Live To Dream full music album ( &+ bonus!) There Was A Girl Outside EP album (otherwise avail. on itunes or bandcamp) and pdf books if/when requested.
Post: If/when I reach the goal or close to it, and the fund closes, a special edition hard copy CD of Live To Dream with signed 'golden apple' photo thank you postcard will be sent out to all donors!
**Don't forget to send me your email with your donation, so I can send you your music downloads!**
The current predicament:
I've been diagnosed with and gradually getting worse with Atlantoaxial instability (C1-C2 instability) with additional C3-C5 instability in my neck and proposed surgery. This is a very painful and potentially life threatening complication of EDS, which I need specialized treatment for. (confirmation papers provided below) I can't access the treatment for this here because I need an EDS specializing neurosurgeon, so I'm fighting for life on a daily, weekly basis right now. I am in severe pain and my life quality is very limited and poor, especially in addition to other EDS affects. I try to push through what I can, but it is very difficult, and gradually becoming more so.
The neurosurgery will fuse my neck together, so that it cannot move around in a dangerous way, doing serious nerve damage over time, causing many bad body symptoms when it subluxes (moves too far out of place, which happens often.) It can possibly dislocate entirely (which can cause death.)
My c-spine is gradually becoming more unstable (and most often this becomes worse without treatment.) The pain can be very severe, and other alarming and scary symptoms especially after I exert (weakness, tremors, heart irregularity, nausea, vertigo, feelings of choking, difficulty breathing etc.) I am unable to fully functionally use the regular Vista neck collar, as my neck is too petite and my jaw is very sore, but I have to sleep in it at night for safety. I'm not in a collar 24/7 as of yet, but I use supportive collars most often and am very careful with moving my neck. I am waiting to speak with Dr Henderson by phone on August 30th for any further instructions. It's looking like my only hope to get treatment and have a second chance at life is to raise the money for it. I don't have any other resources to draw upon.
About the Goal need, breakdown of Funds:
The surgery itself was offered to me at a reduced fee of 19,000 as Dr. Henderson is concerned and wants to help. But this surgery fee doesn't include: Hospital fees or costs of involving other EDS specialists to check out my health pre-surgery, rehabilitation therapies, and devices like mobility aides and bracing which will be needed, travel or accommodation. We have added another 16,000-19,000 for that, and a very small fraction of costs (if I make the goal or close) will go to production of the end reward for donors (similar to how that works on kickstarter.)
All raised funds will be transferred into a trust account, which will then be used for my medical needs, and not be deducted from my disability monthly income. When a person is on disability but funds are needed for an urgent and specific reason, they can be transferred into a trust account of this nature. *Donors will receive a password to an online porthole which will display in receipt all medical expenditures*
Why can't I get care here: Resources here for EDS are either slim or non-existent . There are serious problems with EDS patient ethics, rights, resources, training, education, awareness and access to care here. My personal resources have been totally depleted. This is a very difficult and intricate surgery, especially on someone with EDS. Dr Henderson in MD, USA is currently the best at performing it and doing this surgery and care safely. No neurosurgeon in Canada whom I have spoken to will do this surgery.
More about the condition and the recommended surgery:
In May, I went to meet with Dr Henderson, an EDS specialist Neurosurgeon in the USA. I was referred by my physiatrist here, as I have been struggling with neck pain and nervous system issues for a few years now, among other things. I was concerned I was developing C-spine instability, which can happen with EDS. I was right. After doing a Rotational CT and upright MRI (the two tests required to properly diagnose instability) Dr Henderson diagnosed me with Atlantoaxial Instability of C1-C2 the first two vertebrae in the neck which support the weight of the skull. This can cause a build up of pressure in the brainstem, also, resulting in the symptoms of cervicomedullary syndrome . In addition I have C3-C6 instability which can constrict the throat and breathing. I easily experience these reactions and symptoms which is why I have to be careful with exerting myself physically and being upright for long at a time. If I turn my head too far, it may cause a stroke. Dr. Henderson has warned me of the small chance of sudden death. I have to use neck collars, and sleep in one. It's sort of like living with a 'semi-broken neck' and this is no way to safely or comfortably live. Dr Henderson told me I could try specialized non surgical therapies (also expensive) and using a neck collar first, but, he did not feel confident that this would help the situation. He felt since it's pretty bad already, it'll only get worse, and recommended surgery for my safety and quality of life. (confirmation papers provided below. *please again note that my first name is Natalie but I go by my middle name.)
Hope for outcome and future:
Hopefully, the care I receive in while in the USA getting my neck repaired could transfer over to educating my carers here, so they can continue my care at home. This could finally be a sanctuary after a long and scary battle which went into full throes in 2014. I'm strong and I will keep fighting as long as I can. I'm very excited about the quality of the music album I released last year, and it's powerful messages of hope and inspiration. I have faith it may catch on and be enjoyed by many, as well as be of help to my family and I in the future, though it takes time. It's something that means a lot to me because it feels like I've really done something awesome, and left it here. So I keep trying to grow it on various outlets and online stores. I want to share it with donors too. I hope to be able to get this surgery which I've come to need, and recover successfully, so I can have a good lease on and 2nd chance at life. I could then have more energy and ability to spend time with my family and close friends, and promote my music and message. The music is something I wanted to do my whole life, and due to certain barriers it didn't happen until it was almost too late. After everything, I'm fighting for and slowly losing my life. This feels heartbreaking to me, though I'm not giving up on doing what I can. Though I deal with multiple health ailments from EDS, I'm also strong! I think I could get a lot better with surgery/proper care.
Bio;
I knew I was different growing up, that somehow, there were challenges. I didn't inherently understand social behaviour, my development was different than other kids. I wasn't as good at many things, and sometimes behind, but I had certain areas of great strength and precocity. I used that to carry me through, and the fact that I was autistic flew under the radar. Also, I also got tired more easily than other kids, always 'hurt', and was easily cold. But doctors around here didn't even know what Ehlers-Danlos syndrome was, so I never received a diagnosis or preventative physiotherapy (like most people with EDS.) In my early childhood I had many upper respiratory infections. I didn't understand 'why' about any of this, then. Much later on, I would discover that autism and Ehlers-Danlos syndrome both made so much sense.
In spite of these challenges I had big dreams. I didn't know exactly why I wanted to do things in my own way ambitiously, but I remember feeling a sense of curiosity and purpose, and combining this with my love of creative expression. I was always wanting to learn, create and invent! I never took the 'usual' way. As a young child with undiagnosed autism and EDS, I looked to the performing and literary arts, to teach me more about people and communication. I especially loved and had a passion for music. I worked to attain some experiences in the performing and literary arts over the years, in spite of many barriers and hardships. I found ways to conserve my energy and protect myself from discomfort and injury as much as I could, while also pushing myself (if that makes any sense.) It worked for me for awhile, but in my mid twenties I really started falling apart.
I wanted to do a music album for a long time, and because of barriers and then getting sick, I thought it'd never happen. I am over the moon that I finally did it! I like to consider myself an 'artivist' especially relating to disability, chronic illness, autism, and human rights. I'm passionate about change and awareness. I strive for diplomacy and positivity but assertiveness in this. I also like to have fun and 'steal joy' by expressing creatively and artistically.
My current objectives and interest areas are things like:
-Getting EDS awareness into the mainstream public scene and alert the public of the human rights/patient ethics issues (poor treatment of EDS patients)'
-improving public/social perception of people with invisible and/or subtle-looking disabilities and illnesses
-increasing understanding, proper help, acceptance and celebration of autistic adults
- encouraging the former marginalized people to heal from trauma and self esteem issues, express themselves creatively, through things they love (like art, music, writing, fashion etc.) and hone self worth!
I do this through my musics' message (www.dreamerqueen.com) and social media content like vlogging and instagram
My experience with EDS:
Ehlers-Danlos syndrome (EDS) is an unusual but serious genetic connective tissue disorder. It is systemic (causes many problems.) In fact it's so unusual that it's official mascot is the zebra . EDS causes weakened collagen (your body's 'glue.') It is very painful and degenerative, causing many problems that are difficult and intricate to treat. EDS is a mysterious and mostly invisible but nasty condition which crucially needs more medical and public awareness. Lack of awareness and education is causing the majority of EDS patients to lack access to proper healthcare, to suffer physically and emotionally, and their lives put at risk, unnecessarily. I feel this burn personally.
I've been debilitated by EDS and it's complications and affects, in the past few years especially. I was diagnosed by a geneticist as 'more severely affected' and now I'm dealing with this AAI instability. I also battle dysautonomia , GI complications like pancreatic insufficiency, IBS, GI dysmotility, and borderline diabetes. My dysautonomia is partly stable with the help of meds and weekly IV, but there's a good chance it could go away entirely, or somewhat, with successful C-spine surgery. In EDS, unstable C-spine is a main cause of dysautonomia.
I'm tough and ambitious, I don't like to show or talk much about it when I'm having 'rough patches' like acute flare ups and attacks, or extreme exhaustion periods, so I usually don't. I'm in grief during those time periods too, because I hate it and it's often hard to find words. I tend to 'shut down.' I try to brave and push my way through things as much as I can (though sometimes I can't help but panic, because it's scary..) I have been striving to 'rise above', 'steal joys' and do life, as much as I can for the past few years, in spite of a downward slide in my health. Artistic and creative expression, and creatively cooking for my family when I can, helps me cope with pain, and trauma from being treated poorly due to being an EDS patient with limited income, and an adult on the autistic spectrum who is a bit 'different.'
There's so much I have to miss out on though. There are so many things I want to go out and do with my kids, but I rarely get to, as being upright for prolonged periods is hard (this summer, I did help my son make and sell smoothies in our neighbourhood - which was challenging but important to me, and him.) I want to be able to do more in my life, with my close friends and family, and especially with my sons. All this has felt so very disheartening to me :( ... Although I've been functioning a little better than I should be considering my predicament, my functioning is still really limited and challenged. Every little thing I get to do with family or close friends is precious. I'm gradually getting worse though my body's trying to fight it. I experience very high (sometimes unbearable) pain levels (and have no choice but to use some pain meds to get through.)
Sometimes I have downright frightening symptoms. I'm 'on a leash' because of this c-spine instability especially, which is very painful, weakening, and movement limiting. Everything I do takes me four or five times more energy than an average person (my muscles have to work hard to hold me together, or I can injure/dislocate - which can be dangerous in the neck area.) Though I can walk it is difficult to be upright exerting, and I often use my mobility scooter (while wearing my neck collar.) All this will only gradually get worse without proper treatment. Though some of this is the EDS, a lot of it is the neck - making me weaker and preventing me from being able to do strengthening physio. If the neck was fixed, I could get partially better. I try to take reasonable caution with my movements and lifestyle, and still manage to do 'some' things here and there, what I'm dealing with, left untreated, is degenerative and dangerous, and can take my life away from me completely. I am on borrowed time.
Second chance:
I long for my life back because I am not done with it. I'm a passionate and sensitive person and a creative, fluid thinker. I have a bit of a childlike heart, and I'm a bit of a 'nerd' too (though also a rebel - my friends have described me as a 'nerd-rebel.') I love art, music, nature, food, fashion, my family, my friends and life. I'm a little different especially in my way of speech and mannerisms, because of being on the autistic spectrum. Sometimes this has been really hard and caused trauma, though it's made me who I am. I grew up in challenging and painful circumstances experiencing hardship, bullying and abuse for being different, and also just circumstantially. But I was a smart kid, and I learned to take care of and 'protect' myself young. I used my outlets to cope, like poetry, music, writing, fashion, and learning on my own time. I wanted to do more with it all but, I didn't always cope 'the best.' Especially as I got older. A lot of the needs I had were missed, and I only discovered them later when I have to get help for surface issues. They became 'uncovered.' This led me back to my passions finally, though unfortunately I was falling ill by my mid twenties.
Over the years I have produced heartfelt advocacy content such as blogs and youtube videos (starting as "a girl outside the box") to educate and help other adults on the autistic spectrum. It was also to try and help myself and heal. Aspergers is especially hard on girls and women, because it presents differently and is not often recognized properly. Many have been helped by my work, which I feel good about. I now focus more on my music and art, though combining this with advocacy messages.
The medical system here does not understand autistic adults very well, especially when we become sick, because we present differently, may panic more, behave differently, and experience sensory processing problems when they are acutely ill. They may make harsh judgements and wrongful assumptions which can be downright dangerous for the autistic adult. Autistic adults are more prone to genetic and autoimmune health problems which may be complex or unusual, like EDS. On top of that, the system here doesn't understand EDS and is 'zebra-phobic' about it. This is a terrible double-whammy. It has been very scary, painful and felt dehumanizing for me and my self esteem. It has been hard to heal from trauma when I am constantly experiencing more trauma. With all the genuine diagnoses I have provided, I am supposed to have a 'care plan' now which would at least respond to me more humanely, but, as I have discovered it is not always fully honoured. Last time it wasn't honoured at all. I would give anything to have sanctuary from this.
I want to give back all that I can to those who pledge to my fund. So I continue to do my art and advocate, to the best of my abilities when I can, through social medias. Sometimes it feels like it's hard to 'go on' but my work, art and people I love, especially my kids, keep me going and keep me fighting, with a sense of purpose. I'm so passionate about life, about what I do, and the people who I love and care for. It hurts so much to go through this agonizing battle of slowly losing my life, because there's so much I feel I have yet to do.
My life has been tough due to my experiences and now I am losing my life. It's my greatest dream would be a second chance at life, and be out of severe pain, so I could spend more time with my loved ones, experience joys, find peace, and keep on doing my work and making a difference. I'm not ready to give up. I also believe that if my art, story and work is shared with a great many, It'll hugely help to raise awareness for EDS, autism, and the serious patient care quality issues related to this.
Help Spread the Word!
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Relevant blogs:
Summary on EDS and ethics
My horror story experience with EDS access to care (timeline)
(this above is very true for me...)
ps. we know it is not Christmas, but this is our current favourite family photo! <3
Thank you very much for taking the time to read about my campaign and mission. Love and light.
-Rose
My name is Natalie Marie-Rose Guedes, but my friends and family call me "Rose." I'm a 32 year old mom, wife, music artist and producer. I like to learn, am creative, and love to cook (when I can.) I'm an advocate and chronic illness warrior. I live in Victoria B.C. I have two wonderful boys, ages 10 and 12, whom I love very much.
This is really hard, but my situation has become serious. I have developed a serious complication of Ehlers-Danlos Syndrome (EDS) called AAI or atlantoaxial instability, and c3-c5 instability (in my neck.) EDS is a very unusual connective tissue disorder which causes the body's collagen to break down, and this causes many problems in the body which are disabling, dangerous and incredibly painful. However, there's a lack of awareness, resources and care for EDS in many areas of the world, including where I live. It's a very serious ethical problem for people sick and suffering with EDS (more about below.)
I'm very excited about having been able to, against all odds, compose, co-produce and release my music album last year. I plan to continue pursing and promoting it and it's overall message theme of struggle and hope (which many can relate to!) to the best of my abilities. I want to share this music with the world! I know many will (and already do) enjoy it! I offer my debut full music album Live To Dream , as a gift to those able to pledge 8.00 or more (the albums' current price on Itunes, bandcamp, etc.)
Anything helps! Especially sharing. If my music could reach about four thousand people who liked and supported it, and would pledge for it, even just at it's original price, I could make my goal!This also gets the music and it's message out there to many people - which also means a lot to me because that is a life goal. I really hope for my message, campaign and music to reach many new people. If I'm able to make my goal here on go fund me, I will send all pledgers a special Thank You gift which is a special edition hard copy of the CD (pictured below) and a signed thank you 'golden apple' postcard. My goal amount is set to cover the specialized surgery I need and specialized medical care surrounding that. (more about below)
If you're unable to pledge for Live To Dream at this time, I understand. However, if you support me, please consider sharing my campaign with your social circles. Lots of sharing is important as it can cause a 'ripple affect' reaching many social circles and onward! My life depends on the success of my campaign and/or music content, in more ways than one, because I want to my message to get out there for awareness etc. I need help to share it out there and would very much appreciate this, because these days it is getting something 'out there' (even if it might be good and genuine) can be very difficult. I suggest hashtagging #pledgeforlivetodream #RosesLife #RepairRose #livetodreamalbum on Twitter and instagram, as well.
Also if you want to support me via pledge, but the music is not your personal taste, provide me with another email of someone who you know will enjoy it, and I will send it to them as a gift on your behalf! *note: if you cannot use the payment methods used here and you want to pledge another way please contact me at [email redacted] .. I will add all alternate and offline donations to the fund. (I will also add any profits from upcoming music merch to the fund.)
Reward/Gift for pledging:
Immediate (8 dollars or greater): Digital download of both Live To Dream full music album ( &+ bonus!) There Was A Girl Outside EP album (otherwise avail. on itunes or bandcamp) and pdf books if/when requested.
Post: If/when I reach the goal or close to it, and the fund closes, a special edition hard copy CD of Live To Dream with signed 'golden apple' photo thank you postcard will be sent out to all donors!
**Don't forget to send me your email with your donation, so I can send you your music downloads!**
The current predicament:
I've been diagnosed with and gradually getting worse with Atlantoaxial instability (C1-C2 instability) with additional C3-C5 instability in my neck and proposed surgery. This is a very painful and potentially life threatening complication of EDS, which I need specialized treatment for. (confirmation papers provided below) I can't access the treatment for this here because I need an EDS specializing neurosurgeon, so I'm fighting for life on a daily, weekly basis right now. I am in severe pain and my life quality is very limited and poor, especially in addition to other EDS affects. I try to push through what I can, but it is very difficult, and gradually becoming more so.
The neurosurgery will fuse my neck together, so that it cannot move around in a dangerous way, doing serious nerve damage over time, causing many bad body symptoms when it subluxes (moves too far out of place, which happens often.) It can possibly dislocate entirely (which can cause death.)
My c-spine is gradually becoming more unstable (and most often this becomes worse without treatment.) The pain can be very severe, and other alarming and scary symptoms especially after I exert (weakness, tremors, heart irregularity, nausea, vertigo, feelings of choking, difficulty breathing etc.) I am unable to fully functionally use the regular Vista neck collar, as my neck is too petite and my jaw is very sore, but I have to sleep in it at night for safety. I'm not in a collar 24/7 as of yet, but I use supportive collars most often and am very careful with moving my neck. I am waiting to speak with Dr Henderson by phone on August 30th for any further instructions. It's looking like my only hope to get treatment and have a second chance at life is to raise the money for it. I don't have any other resources to draw upon.
About the Goal need, breakdown of Funds:
The surgery itself was offered to me at a reduced fee of 19,000 as Dr. Henderson is concerned and wants to help. But this surgery fee doesn't include: Hospital fees or costs of involving other EDS specialists to check out my health pre-surgery, rehabilitation therapies, and devices like mobility aides and bracing which will be needed, travel or accommodation. We have added another 16,000-19,000 for that, and a very small fraction of costs (if I make the goal or close) will go to production of the end reward for donors (similar to how that works on kickstarter.)
All raised funds will be transferred into a trust account, which will then be used for my medical needs, and not be deducted from my disability monthly income. When a person is on disability but funds are needed for an urgent and specific reason, they can be transferred into a trust account of this nature. *Donors will receive a password to an online porthole which will display in receipt all medical expenditures*
Why can't I get care here: Resources here for EDS are either slim or non-existent . There are serious problems with EDS patient ethics, rights, resources, training, education, awareness and access to care here. My personal resources have been totally depleted. This is a very difficult and intricate surgery, especially on someone with EDS. Dr Henderson in MD, USA is currently the best at performing it and doing this surgery and care safely. No neurosurgeon in Canada whom I have spoken to will do this surgery.
More about the condition and the recommended surgery:
In May, I went to meet with Dr Henderson, an EDS specialist Neurosurgeon in the USA. I was referred by my physiatrist here, as I have been struggling with neck pain and nervous system issues for a few years now, among other things. I was concerned I was developing C-spine instability, which can happen with EDS. I was right. After doing a Rotational CT and upright MRI (the two tests required to properly diagnose instability) Dr Henderson diagnosed me with Atlantoaxial Instability of C1-C2 the first two vertebrae in the neck which support the weight of the skull. This can cause a build up of pressure in the brainstem, also, resulting in the symptoms of cervicomedullary syndrome . In addition I have C3-C6 instability which can constrict the throat and breathing. I easily experience these reactions and symptoms which is why I have to be careful with exerting myself physically and being upright for long at a time. If I turn my head too far, it may cause a stroke. Dr. Henderson has warned me of the small chance of sudden death. I have to use neck collars, and sleep in one. It's sort of like living with a 'semi-broken neck' and this is no way to safely or comfortably live. Dr Henderson told me I could try specialized non surgical therapies (also expensive) and using a neck collar first, but, he did not feel confident that this would help the situation. He felt since it's pretty bad already, it'll only get worse, and recommended surgery for my safety and quality of life. (confirmation papers provided below. *please again note that my first name is Natalie but I go by my middle name.)
Hope for outcome and future:
Hopefully, the care I receive in while in the USA getting my neck repaired could transfer over to educating my carers here, so they can continue my care at home. This could finally be a sanctuary after a long and scary battle which went into full throes in 2014. I'm strong and I will keep fighting as long as I can. I'm very excited about the quality of the music album I released last year, and it's powerful messages of hope and inspiration. I have faith it may catch on and be enjoyed by many, as well as be of help to my family and I in the future, though it takes time. It's something that means a lot to me because it feels like I've really done something awesome, and left it here. So I keep trying to grow it on various outlets and online stores. I want to share it with donors too. I hope to be able to get this surgery which I've come to need, and recover successfully, so I can have a good lease on and 2nd chance at life. I could then have more energy and ability to spend time with my family and close friends, and promote my music and message. The music is something I wanted to do my whole life, and due to certain barriers it didn't happen until it was almost too late. After everything, I'm fighting for and slowly losing my life. This feels heartbreaking to me, though I'm not giving up on doing what I can. Though I deal with multiple health ailments from EDS, I'm also strong! I think I could get a lot better with surgery/proper care.
Bio;
I knew I was different growing up, that somehow, there were challenges. I didn't inherently understand social behaviour, my development was different than other kids. I wasn't as good at many things, and sometimes behind, but I had certain areas of great strength and precocity. I used that to carry me through, and the fact that I was autistic flew under the radar. Also, I also got tired more easily than other kids, always 'hurt', and was easily cold. But doctors around here didn't even know what Ehlers-Danlos syndrome was, so I never received a diagnosis or preventative physiotherapy (like most people with EDS.) In my early childhood I had many upper respiratory infections. I didn't understand 'why' about any of this, then. Much later on, I would discover that autism and Ehlers-Danlos syndrome both made so much sense.
In spite of these challenges I had big dreams. I didn't know exactly why I wanted to do things in my own way ambitiously, but I remember feeling a sense of curiosity and purpose, and combining this with my love of creative expression. I was always wanting to learn, create and invent! I never took the 'usual' way. As a young child with undiagnosed autism and EDS, I looked to the performing and literary arts, to teach me more about people and communication. I especially loved and had a passion for music. I worked to attain some experiences in the performing and literary arts over the years, in spite of many barriers and hardships. I found ways to conserve my energy and protect myself from discomfort and injury as much as I could, while also pushing myself (if that makes any sense.) It worked for me for awhile, but in my mid twenties I really started falling apart.
I wanted to do a music album for a long time, and because of barriers and then getting sick, I thought it'd never happen. I am over the moon that I finally did it! I like to consider myself an 'artivist' especially relating to disability, chronic illness, autism, and human rights. I'm passionate about change and awareness. I strive for diplomacy and positivity but assertiveness in this. I also like to have fun and 'steal joy' by expressing creatively and artistically.
My current objectives and interest areas are things like:
-Getting EDS awareness into the mainstream public scene and alert the public of the human rights/patient ethics issues (poor treatment of EDS patients)'
-improving public/social perception of people with invisible and/or subtle-looking disabilities and illnesses
-increasing understanding, proper help, acceptance and celebration of autistic adults
- encouraging the former marginalized people to heal from trauma and self esteem issues, express themselves creatively, through things they love (like art, music, writing, fashion etc.) and hone self worth!
I do this through my musics' message (www.dreamerqueen.com) and social media content like vlogging and instagram
My experience with EDS:
Ehlers-Danlos syndrome (EDS) is an unusual but serious genetic connective tissue disorder. It is systemic (causes many problems.) In fact it's so unusual that it's official mascot is the zebra . EDS causes weakened collagen (your body's 'glue.') It is very painful and degenerative, causing many problems that are difficult and intricate to treat. EDS is a mysterious and mostly invisible but nasty condition which crucially needs more medical and public awareness. Lack of awareness and education is causing the majority of EDS patients to lack access to proper healthcare, to suffer physically and emotionally, and their lives put at risk, unnecessarily. I feel this burn personally.
I've been debilitated by EDS and it's complications and affects, in the past few years especially. I was diagnosed by a geneticist as 'more severely affected' and now I'm dealing with this AAI instability. I also battle dysautonomia , GI complications like pancreatic insufficiency, IBS, GI dysmotility, and borderline diabetes. My dysautonomia is partly stable with the help of meds and weekly IV, but there's a good chance it could go away entirely, or somewhat, with successful C-spine surgery. In EDS, unstable C-spine is a main cause of dysautonomia.
I'm tough and ambitious, I don't like to show or talk much about it when I'm having 'rough patches' like acute flare ups and attacks, or extreme exhaustion periods, so I usually don't. I'm in grief during those time periods too, because I hate it and it's often hard to find words. I tend to 'shut down.' I try to brave and push my way through things as much as I can (though sometimes I can't help but panic, because it's scary..) I have been striving to 'rise above', 'steal joys' and do life, as much as I can for the past few years, in spite of a downward slide in my health. Artistic and creative expression, and creatively cooking for my family when I can, helps me cope with pain, and trauma from being treated poorly due to being an EDS patient with limited income, and an adult on the autistic spectrum who is a bit 'different.'
There's so much I have to miss out on though. There are so many things I want to go out and do with my kids, but I rarely get to, as being upright for prolonged periods is hard (this summer, I did help my son make and sell smoothies in our neighbourhood - which was challenging but important to me, and him.) I want to be able to do more in my life, with my close friends and family, and especially with my sons. All this has felt so very disheartening to me :( ... Although I've been functioning a little better than I should be considering my predicament, my functioning is still really limited and challenged. Every little thing I get to do with family or close friends is precious. I'm gradually getting worse though my body's trying to fight it. I experience very high (sometimes unbearable) pain levels (and have no choice but to use some pain meds to get through.)
Sometimes I have downright frightening symptoms. I'm 'on a leash' because of this c-spine instability especially, which is very painful, weakening, and movement limiting. Everything I do takes me four or five times more energy than an average person (my muscles have to work hard to hold me together, or I can injure/dislocate - which can be dangerous in the neck area.) Though I can walk it is difficult to be upright exerting, and I often use my mobility scooter (while wearing my neck collar.) All this will only gradually get worse without proper treatment. Though some of this is the EDS, a lot of it is the neck - making me weaker and preventing me from being able to do strengthening physio. If the neck was fixed, I could get partially better. I try to take reasonable caution with my movements and lifestyle, and still manage to do 'some' things here and there, what I'm dealing with, left untreated, is degenerative and dangerous, and can take my life away from me completely. I am on borrowed time.
Second chance:
I long for my life back because I am not done with it. I'm a passionate and sensitive person and a creative, fluid thinker. I have a bit of a childlike heart, and I'm a bit of a 'nerd' too (though also a rebel - my friends have described me as a 'nerd-rebel.') I love art, music, nature, food, fashion, my family, my friends and life. I'm a little different especially in my way of speech and mannerisms, because of being on the autistic spectrum. Sometimes this has been really hard and caused trauma, though it's made me who I am. I grew up in challenging and painful circumstances experiencing hardship, bullying and abuse for being different, and also just circumstantially. But I was a smart kid, and I learned to take care of and 'protect' myself young. I used my outlets to cope, like poetry, music, writing, fashion, and learning on my own time. I wanted to do more with it all but, I didn't always cope 'the best.' Especially as I got older. A lot of the needs I had were missed, and I only discovered them later when I have to get help for surface issues. They became 'uncovered.' This led me back to my passions finally, though unfortunately I was falling ill by my mid twenties.
Over the years I have produced heartfelt advocacy content such as blogs and youtube videos (starting as "a girl outside the box") to educate and help other adults on the autistic spectrum. It was also to try and help myself and heal. Aspergers is especially hard on girls and women, because it presents differently and is not often recognized properly. Many have been helped by my work, which I feel good about. I now focus more on my music and art, though combining this with advocacy messages.
The medical system here does not understand autistic adults very well, especially when we become sick, because we present differently, may panic more, behave differently, and experience sensory processing problems when they are acutely ill. They may make harsh judgements and wrongful assumptions which can be downright dangerous for the autistic adult. Autistic adults are more prone to genetic and autoimmune health problems which may be complex or unusual, like EDS. On top of that, the system here doesn't understand EDS and is 'zebra-phobic' about it. This is a terrible double-whammy. It has been very scary, painful and felt dehumanizing for me and my self esteem. It has been hard to heal from trauma when I am constantly experiencing more trauma. With all the genuine diagnoses I have provided, I am supposed to have a 'care plan' now which would at least respond to me more humanely, but, as I have discovered it is not always fully honoured. Last time it wasn't honoured at all. I would give anything to have sanctuary from this.
I want to give back all that I can to those who pledge to my fund. So I continue to do my art and advocate, to the best of my abilities when I can, through social medias. Sometimes it feels like it's hard to 'go on' but my work, art and people I love, especially my kids, keep me going and keep me fighting, with a sense of purpose. I'm so passionate about life, about what I do, and the people who I love and care for. It hurts so much to go through this agonizing battle of slowly losing my life, because there's so much I feel I have yet to do.
My life has been tough due to my experiences and now I am losing my life. It's my greatest dream would be a second chance at life, and be out of severe pain, so I could spend more time with my loved ones, experience joys, find peace, and keep on doing my work and making a difference. I'm not ready to give up. I also believe that if my art, story and work is shared with a great many, It'll hugely help to raise awareness for EDS, autism, and the serious patient care quality issues related to this.
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Relevant blogs:
Summary on EDS and ethics
My horror story experience with EDS access to care (timeline)
(this above is very true for me...)
ps. we know it is not Christmas, but this is our current favourite family photo! <3
Thank you very much for taking the time to read about my campaign and mission. Love and light.
-Rose
Organizer
Rose Guedes
Organizer
Victoria, BC
