~YOU ARE WORTHY~I AM WORTHY~WE ARE WORTHY~OF OUR DREAMS~
GET THE digital download of Live To Dream
(Listen to the teaser *here*)
plus bonus and perks
(more about below)
FOR AS LITTLE AS A 5 $ PLEDGE
(or more if you can and/or wish to!)
LIVE TO DREAM GOLD
Watch the 2.5 minute intro video for Live To Dream Gold
Pledgers get an immediate digital download of Live To Dream sent via email. Plus, a bonus download of There Was A Girl Outside 5 song EP If/when my full goal is reached, you will get a special appreciation Gift package; A Special Edition hard copy of Live To Dream, signed to you personally (in gold sharpie!) a special Thank You postcard, and a Worthy Unicorn pin!
Extra bonus: If you are able to get 5 or more people to Pledge for Live To Dream, you will get a special edition hard copy of Live To Dream signed and sent to you early!
Public tabs on how the campaign is doing and number of Pledgers will be updated weekly on Updates page!
HELP SPREAD THE WORD! share on social media & Tell your friends!
Pledges can be accepted by paypal or credit card through this page. If you do not have credit or paypal, small amounts of cash (or money order) can be mailed. *Note: The Pledge button is activated for credit card payments only. To use paypal, direct Pledges to email@example.com .. For cash or money order by mail send to this address.
About Live To Dream Gold Campaign:
I am Rose Guedes, music artist aka. "Dreamerqueen", artivist/advocate, wife and mom of two young men who are 10 and 12. With this campaign, I'm hoping to reach 40,000 people who will enjoy and support Dreamerqueens' music, and it's message, and pledge 5 $ or more for a high quality digital download of Live To Dream (plus a bonus digital download of There Was A Girl Outside.)
I'm hoping to reach many who will pledge a little - because a little, though affordable, adds up! ... and also the music and it's message gets to reach many people, which is my hope! In order to reach so many people, your help to spread the word is very much welcome and appreciated!
I (Dreamerqueen aka. Rose Guedes) am fighting Ehlers-Danlos syndrome (EDS) a mostly invisible but serious genetic disease which affects the body's collagen, which is your body’s ‘glue.’ (I try to educate about and create awareness for EDS, as much as I'm able, in some of my Youtube videos and posts on social media.) I love life and want to live it to the fullest (and longest) that I can! I do everything I can to try and do that, and to 'rise above' my very challenging experience. However, in reality, it's pretty tough.
Collagen’s everywhere in your body, so EDS can cause many problems. It has caused many for me. My condition is quite progressed at this point and I was diagnosed as ‘more severely affected’ by a geneticist.
EDS is very painful because it causes the patient to easily injure. It’s almost hard not to injure because you need to ‘do things’ but, you’re fragile. You pop, click, even rip and tear every time you’re not ‘extra’ careful..and sometimes even just because you moved. EDSers get used to experiencing small injuries frequently, and on a daily basis. It’s like being a butterfly, or, if non EDS folk were igneous or sedimentary rock, an EDS person would be like shale, or even soapstone (there’s my artistic analogy for it.)
This is why I’m often seen wearing bracing on my joints, depending on what I need that day, and what hurts most. Bracing can be annoying (and an expense) but it helps prevent injuries. I try to use flexible types, because they are more comfortable, and I prefer the colour black, because it goes with everything. I try to blend it in with my sense of fashion. I wear lots of rings on my fingers to keep my hand joints in when they bend, and I am hoping to afford EDS ring splints soon (they are very pretty, and helpful.)
However, I (and others with EDS) still get judged. People who don’t understand what I am dealing with sometimes rudely judge me as being an ‘attention seeker’ etc. for wearing multiple medical braces on my body. It can hurt and be rather infuriating, because these people are so ignorant - they really don’t get my challenges with living and experiencing so much pain. But I try to rise above and educate.
Due to lack of awareness, I was not diagnosed properly for many years. I had no idea what EDS even was. I didn’t realize being so ‘soft bodied’ and injuring a little more easily just wasn’t normal, until it got worse and the pain started to set in very severely. Then I knew something was wrong…and internal body systems are affected too. EDS is very unusual, and under-researched, so I still struggle to understand it, but I know a lot more than I did. I have had to learn.
I wish I, and medical personnel dealing with me, had been aware before, which is one main reason I'm spreading awareness. I didn't know what to avoid and prevent, as more damage was being done. EDS affects the musculoskeletal system a lot; the bones, joints and soft tissues. Lots of damage can be done when someone doesn’t know they are more fragile..doing themselves damage which will cause things like early arthritis, painful tendonitis, and worst of all deterioration via instability of the spine (especially the neck.) Unfortunately, there's very little access to proper EDS care and services in the public medical system here. Though my current doctors try their best to support me now, resources in the system are lacking. Many other places in the world have the same problem. (for more info on this, and EDS, go to the info page at the bottom.)
My current predicament with a serious EDS complication which I need medical intervention for:
My most serious problem now is that I have now developed C-spine (neck) instability, which means the C1-C5 vertebrae in my neck are becoming unstable and slowly collapsing. It is one of the worst complications of EDS. It's very painful, and causes affects which have a profound impact on my energy and quality of life. It's risky to be left untreated. Without treatment, this problem will only get worse and can end up being fatal. This is why I wear the 'neck collars' in my photos and videos, and I have to sleep in the big medical one. Neck collars do not cure the problem, but they are somewhat protective from danger. (more info & confirmation ie. diagnostic and surgery proposal papers provided through via links at the bottom of page)
I am fighting for life, because there is no proper treatment available for EDS where I live. I'm not the only one. I want to speak out about this, as well as try to help myself, and try to reach my dreams in every way I'm able. Also, I hope this will help positively contribute to my children' futures.
I have been told that, most likely, I'll need an intricate neck fusion surgery. Though it's good to try a couple other things that may work (though are also an expense) it's likely this may end up being what is needed. Dr. Henderson, EDS specializing neurosurgeon, proposed a surgery which will fuse my neck from the C1 to the C5. The surgery is intricate and dangerous, but it would be done by the famous and amazing Dr. Fraser Henderson, who is the 'best of the best' - he has saved many suffering with EDS neck instability, and given them quality of life back! I myself am not waiting to try and get joys out of life or to make an impact, but having a successful surgery/subsequent care would hugely increase my quality of life, and reduce my pain.
The very high costs of EDS care, especially something like a surgery and recovery process, are unattainable for me. I am unable to work conventionally, due to the disability and illness. I have no family who can help. I'm already struggling with the cost of trying to manage my EDS on my own, as it is.
In the end, I have no way of accessing the amount of funds I need for the help I really need. If I cannot manage to somehow reach the help I need, I may lose my life or end up being in a position where I'm slowly dying in a public 'care home' situation, while receiving 'round the clock' care, unable to do much for myself, away from my family. This happens to people with EDS, who cannot afford proper care.
I'm a very independent strong willed person, and this is my worst nightmare. It doesn't have to be that way, if I could afford the help and intervention I need for my EDS. Though I live in Canada, the type of care I need to manage my EDS properly eg. prevent severe loss of mobility, possible organ damage, eventual high-needs care home, and premature death is not covered by the medical plan (believe it or not.) This is indeed a human rights issue and people in the EDS community are trying to get Canadian health services to accept this, learn about EDS, and deliver - but it's barely happening at this time. This why I'm running this campaign..and it's also for awareness.
Having a better level of EDS awareness in society will help bring change. There has been a lot of unfairness and mistreatment which has happened and is still happening to EDS patients (more about this linked.) There is a lot of disbelief and minimizing EDS’ affects until it is way too late, because doctors do not understand what to look at and test. EDS may be very different to most other common chronic illnesses, but it can become very serious and life threatening. This is why I open up about my experience, for EDS awareness and education, because it is so badly needed.
If 40,000 people pledged just the minimum suggested about for Live To Dream, it would add up, my musics' message could reach many people, EDS awareness would also reach many people, and, I could access live saving medical treatment!
To quote from my "Meaning of Gold" page: "Doing this campaign is a long shot, but I am going to give it my best shot. I am basically hoping to save my life, and doing what I love in the process. I cannot think of a better way to fight for my life, than at least doing what I love, so that if I don't make it at least I was doing what I love in the end - so they don't win."