Rosie's Fight For Survival, Freedom & Peace

Hi, I’m Scarlit-Rose Ashcraft, though many close to me call me Rosie. I live in Victoria BC Canada, which is beautiful but difficult. I’m an award-winning music artist under the name Dreamer Queen and this year I received the Best Pop Album 2024 award from the Rampage Music Awards, and it was by vote, which is a real honor. I am hoping this will help further popularity and number of plays (frustratingly, it's very difficult to make any significant financial profit with music in the digital age you need millions upon millions of plays and I only have thousands.) I’m also a writer and blogger, published poet, creative home cook, fashion lover (especially thrifting), passionate advocate & "artivist" (which combines activism with art) loving mom/fur parent and friend.

My efforts to exercise. Sadly my health has been in a downturn with stress and I haven’t been to the gym in a few weeks now, which I hate :( ... I am hoping to get better enough to return again.

I’m also a survivor of many things including a really tough life (beginning from childhood actually.) In childhood I suffered a difficult and painful home environment in addition to bullying in school and suffering with undiagnosed autism as well as an undiagnosed rare disease (Ehlers-Danlos Syndrome aka EDS) that caused me more pain and fatigue than other kids. I was repeatedly gaslit about it sadly, and it was traumatic. Only in my adulthood did I discover and pursue the truth about these things, and this is why today I am an advocate. Especially for earlier intervention when it comes to both autism and EDS.

However, back in 2011/12 my self and community advocacy efforts not to mention my quest for much needed diagnoses, was met with terrible hostility within the medical system and I suffered greatly due to that. They tried to throw me under the bus. I had to fight for my rights to receive actual medical care, and in the process, due to the huge delay in diagnosis and care, I endured damage, some which was reversible but much of which has been permanent. I am currently working on a documentary to finally tell my story about that, called Near-Fatal Mislabel. It has been cathartic, but at times really hard. However, I am persevering because I strongly feel it must be done for education and much-needed awareness.

Due to how I was initially treated in the medical system my health was much further damaged and it directly leads to the situation I am stuck in today. I am a fighter, however, but I am reaching out for help as I find inflation pushing me to the end of my rope. I just don’t have enough to live. In this, I am making plans to earn more, but this will take time.

(me below holding my Best Pop Album award)

So, I am working on both an online nutrition course (so I can consult via zoom and phone, charging by the hour) and my own brand of work with my music and ‘artivism’ on places like YouTube, Instagram and TikTok especially. I am right in the process of revamping things and making a return to social media for content creating. In the mean time however, I am in urgent need of help and a boost. Please consider helping via donating and/or bringing my story to the attention of those with the means to help (even celebrities and such.)

My Precision Nutrition book

Also please do note, FB limits visibility of GoFundMe (which I think is terribly unfair) being posted on your pages’ wall, so though you can post it, please do consider that it is best to private message people the link, which is what I am forced to do myself, with a quick “sorry to bother you, please don’t feel pressured, but unfortunately posting this on my wall limits visibility and is therefore unhelpful. Please do consider sharing, especially in the same way I am now, via messaging your friends.”

More than anything else I am extremely passionate about my music; so I would be touring and promoting my music album more if I could, not to mention making my much desired second album happen, because I have an archive collection of really great songs that my friends/fam really want to see me materialize (I am still trying) but heartbreakingly - instead - I'm struggling to live in a hellish prison that I would give anything to be free of.

It's a frustrating shame because I know my music is good and that if I wasn't being cruelly kept down by these barriers I'd have a good shot at a reasonably successful music career. I am still trying though. Recently I began playing my guitar again, and I am trying to set up my keyboard.

You can check out my music on my website and a few earlier archives on my Dreamer Queen account on Bandcamp

The downlow of why I need help:

Inflation is only pushing my life situation to an unbearable level. PWD (disability) pension has now, for me, become simply not enough to live adequately. I am in the process of developing a plan to earn more because I absolutely have to.. I need out of PWD.. it is NOT and never will be enough to live humanely with my medical condition ESPECIALLY due to the current state of our healthcare system which is appalling for everyone but truly deadly to rare disease sufferers

So, I am in the process of doing the Precision nutrition consulting course from home, so I can begin distance

consulting (zoom, phone etc) charging by the hour as well as my own brand of artivist/advocacy driven (but also with some fun, like make up tutorials) work/music but I do need some time. In the meantime I am reaching out for some pretty urgently needed help while I get on my feet and establish my at home earning plans.

I am determined to get out from under .. and in this I am not asking for a magical and unrealistically high number of funds in order for that to happen. I am only asking for an amount which would help me pay off my bills so I don’t risk getting cut off, keep up with my food and supplements so that I don’t get too sick in the process of trying to get out from under, for a short period of time while I do my Precision Nutrition course, until I am earning my way out myself.

Since the current situation has gotten more dire than ever and to a crisis point where I risk being cut off of essentials, I am listing this under "Emergency" - though this may change later. I have gotten to the point where I am constantly unable to make ends meet and the stress is beginning to break me down mentally and physically. I was getting better with my health but sadly and frustratingly in the past 2-3 weeks the stress of all this has caused me to regress and I am in too much physical pain (especially back pain) to return to the gym. This really upsets me.

I have tried everything to improve and manage my health in the face of things but it is nearly impossible living on PWD and that is beginning to seem obvious. Currently, I am at the end of my rope and need a little help to get on my feet as I am trying to begin pushing to earn for myself from home via my plans.

So, I could really use some help, whether it be by making a donation large or small, or trying to get this GoFundMe to the attention of people with social prominence and/or means, who can afford to help, and maybe spread awareness.

Again, I can promise that I will give back endlessly, as I have done over the years; I have helped educate many and several folks have credited me with their own diagnoses/awareness and family' awareness - this feels empowering and I only want to take this to the next level; I still have lots of unfinished business here!!

I also want to emphasize that all donors will be offered gifts of gratuity; music, books, poetry, even complimentary nutrition consults after I finish my course and get my certification, or photo albums if desired!

Donors will have access to much of my work for free!

Below a photo of me during the medical neglect and how shockingly thin I was to the point my face was skeletal, and I was forced to make my own neck brace using a thick belt,velcro and glue (not to mention I was losing teeth.)

Not only do I have a rare disease, I have to fight it a lot on my own - having a very particular diet and taking several supplements, some pharmaceutical grade, in order to try and keep a decent level of functioning - and this is because, like many Ehlers-Danlos sufferers - I don't have access to adequate medical care other than superficial drugs. The cost of maintaning my EDS related issues monthly is so overwhelmingly high…It is just too high for me to keep up with anymore based on PWD (disability pension) ..

I have been trying to do this but it's a catch-22 while not being able to currently make ends meet enough, so donations will really help. I really hope to make my full goal as that'd be ideal, but anything helps.

At this time I am really exasperated and stressed but I'm still trying to fight and not give up, to get things finally off the ground, so I can achieve the goal, peace and freedom that I am aiming for.

More about barriers;

I am neurodivergent (I have an autism diagnosis) which can be really hard especially as a woman, and more brutally I deal with severe chronic pain, fatigue and other challenges, as well as marginalization, due to a brutal rare disease, a connective tissue disorder called Ehlers-Danlos Syndrome, which is not only very painful but causes multiple, debilitating and sometimes very serious systemic problems; dysautonomia (autonomic nervous system dysfunction, especially Post Orthostatic Tachycardia Syndrome aka POTS (I suffer with POTS and have to be on beta blockers to slow my heart rate and I have a Port in my chest for weekly saline infusions so I don’t faint and can actually function somewhat) digestive disorders like IBS and gastric emptying problems and occasionally pancreatic insufficiency (which I also have and have to take Creon pancreatic enzymes; this was only discovered after years of being underweight and having severe dental problems due to EDS itself and malnutrition) and autoimmune problems (mast cell activation - which I also have- which causes problems with histamine that can even become dangerous - I have to take h1/h2 blockers ie Claritin and Pepcid, as well as cromolyn sodium, daily) and much more.

So as you can see, EDS is brutal! So why is it so badly discriminated against and neglected?? For one, because it’s odd, it’s different. Nevertheless, it is very painful and challenging and it’s high time medical personnel recognize the magnitude of this and develop better resources and infrastructure for the much needed but often mostly neglected ongoing maintenance of EDS.

Currently our medical system is so badly backed up that I can only see my GP once every 2.5 months .. and this is inadequate for me completely! It is frustrating. I don’t have any extra funds to pay for better care the this bare bone minimum I am getting and my life depends on this changing!

EDS' self-management is very costly to keep up with; a lot of necessary expenses are out of pocket due to our medical systems' near-abandonment of this disease. It's awful, grossly unfair and many of us, especially when financially limited, have suffered horribly from broken dreams, extreme pain, debility and terribly poor life quality, even premature death, including due to feeling cornered into undergoing the MAiD program (medical assistance in dying) which should never be used because someone can't financially and/or systemically access resources they need to manage their disease humanely - but disgustingly is and somewhat frequently.

Grocery prices are skyrocketing thanks to inflation, and with this I predict disabled people, especially rare disease sufferers (many of whom have EDS) will only use MAiD at an increased rate. Not to mention many are dying from the stress alone.

Meanwhile, the government continues to refuse to adequately increase disability pension rates.

I am fighting to not have to do MAiD still, because I want to live and I have so much left to give but it all seems to have worked against me thus far; I lost nearly half my income last year when I lost my older sons' presence here; He had to move out because of serious mental health issues that he needed more help with from an equipped group home. With this we took a huge loss financially with his child credit and disability bonus suddenly gone. He still does visit, and I try to feed him even though food is tight because of this and I do not get any support money to financially support eating during the frequent visits (however, he's my son, and I don't want to turn him away form visiting because of food/money. It's a tough spot to be in.)

Things are to the point where my younger 16 year old has been looking for a job, and so am I, but again I am not physically able work outside the home due to my health, nor do I have much training, however as I will explain below I am trying to change this with my home nutrition course. It will take some time though

So, I am raising money in the meantime to help with the crisis I am currently in financially, which, again, has been significantly holding me back from being able to move forward, launch my work, reach my dreams and make the impact that I want to in this life.

In order of importance funds will go to dealing with at-risk bills and getting all caught up paying off my card so it can be restored for ordering medical supplies/supplements before I lose it, some support funds saved to afford supplements for a few months til I can get an earning flow going more consistently, and, if there's funds, a mac computer (used will be ok) so I can use my favorite music program Logic 10 and finally get the Better Than Never trilogy (a proposed second album 12 times two double sided vinyl collection of all of my best songs that are on my bucket list to be materialized because they're too good not to) off the ground released/promoted. My phones' battery is also dying out and I could do really with a new one (or at least battery replacement) in order to be able to continue using it as a camera/promo tool.

Right now, I am trying to launch anyway, as a means to begin earning money, even though it feels like I'm doing this while climbing a steep mountain in a storm. There has also been the freelance modeling gig on OnlyFans (I began an account out of desperation) but I have my personal limits with this, and due to that my earnings on there will also be limited - as I will explain below.

I had been struggling for a very long time to finally get back out there with my work, and had some barriers with stress and energy, and some social deterrents which made me struggle to do it, but at this point I absolutely must take the plunge no matter what. In this I simply have to have zero tolerance for negativity and/or abuse, potential smear attempts etc. because I know who I am as well as what I am not - and not only can I update my disclaimer to note the zero tolerance as well as assert that if any untruthful/exaggerated stuff about my personal information is publicly claimed that - I can and will pursue slander/libel charges. I can deal with harassment/libel on a legal level if needed (ie. if friends/supporters provide me screenshots, if that even happens which hopefully won't but I am prepared if so.) So, the 2024 updated Disclaimer should take care of that so I can move forward.

Unfortunately, coming from a toxic and dysfunctional family that are sadly not only supportive of me in trying times but tend to be draining (like demanding to borrow money I don't have) and/or abusive (attacking me when I try to set boundaries, making exaggerated claims etc) so I try to steer clear for pretty obvious reasons (for the sake of my mental/physical health.)

It's sad that my family is like this but I am not the only one. It's no fun to have to deal with this on top of everything. Boundaries are key. Unfortunately too, I have in my past seemed to attract some 'frenemy' people like this who threatened to troll/harass but the above mentioned disclaimer should take care of that so I can move forward, heal, grow and find peace as I so desperately need to here.

What is nice about GFM funds too is that the disability pension office confirmed to me that they are not deductable as they are considered 'gift', unlike earnings. I emphasize that because a 'frenemy' as mentioned above tried to 'report' my GoFundMe so that I would be caught for "fraud" and have to "pay it back." This lead to a conversation wit the PWD office, which then confirmed to me this is not the case, and it is 'gift', as long as I report it monthly, and it is being used for health reasons, which I have done and will continue to do!

It is indeed frustrating that I do tend to attract some very vicious, quite passionate frankly (and really undeserving) hate from a small number of people .. however hopefully the disclaimer can shut them down so they can find something better to do with their time. It's time for me to grow and not be too scared to step back out there as I need to, because I have unfinished business and I am passionate about finishing it! I can and will choose to focus on the many who do support me (many more than a few bitter haters anyhow!) and want to pay positive mind to my presentation and message, and move forward with that.

I can't give up!

In advance I apologize for this long write up. My situation is quite complicated, and due to my autism I am detail-oriented. I will try to also put these words through my AI narration program and make an audio video of this writeup for those who find that easier.

Lately, I have been feeling quite destitute, as you can see from my frustration on the right side of the profile picture, which I mostly covered with a sticker as showing the full face felt too personal (the ugly cry, you know) Though even showing it that way still feels personal and a bit humiliating to share I feel that that photo depicts how I often feel inside right now, even when I am smiling and trying to be strong as I usually do.

PWD (persons with disabilities pension) is just not enough to live off of and never will be. Especially with all the extra costs of being chronically ill with a rare disease to boot; I need to afford special diets, supplements, uncovered meds etc ..

I tend to financially prioritize the above over utilities - due to the realistic fear that I could get very sick if I don’t have my essentials to manage my condition. Due to this my bills are very high and backed up, and I risk cut off.

I'm a warrior and survivor of a very difficult life, which actually began in childhood.

In spite, I have fought incredibly hard to achieve things anyway like making my music, and vlogging/blogging which has brought awareness to and helped many people. But I would give anything for the hardship that I’m dealing with to just stop so that I can heal and find peace. I don’t know how much more I can take of all this, as it stands.

People don't know how hard life really is for me because I deal with a lot of shame in terms of talking about it or exposing it in full. Having a history of being bullied, abused, put down and degraded at times doesn't help.However, even though I now believe and get some degree of care now, it's all superficial… My doctor seems to want to help me more but his hands are tied there. The problem is there is no proper infrastructure to provide EDS care in Canada, so like Canadian EDSers; it's all drugs and they're making me sick. I'm still often discriminated against by specialists who don't want to deal with somebody that has EDS and straight up refuse my case. They're gradually killing me, and my quality of life is something I fight so hard to get little morsels of though in actuality it's still much poorer than it looks and then I have been willing to admit to you publicly. Seemingly it is a constant of putting out fires, it's exhausting.

I suffer with shame over the way that my life is, even though I know it's mostly not my fault, and that poor coping at times has been due to desperation. The bullies and trolls who are fixated on hating me know this, and go for my throat with comments like “Loser” and “user”, and that I am “gross” for having and loving my pets (especially my ratties, but I love them so much and they are sweet and make me happy - I can’t help it), not being able to perfectly keep house etc.

It hurts, I won’t lie… but this time around when I put myself out there I will, once again, have zero tolerance for this kind of harassment. I have the right to heal and learn to love myself, and heal from feeling shame. I will block, delete, report and threaten litigation if I have to (if they keep harassing me.)

So I have finally begun working on telling my story centered around the awful things that the medical system put me through via a documentary I am producing called Near Fatal Mislabel, with the help of Murf AI narration, co-writing a script with my husband Nelson, and using several photographs/some documents etc.. I am looking forward to the results. So far it has been cathartic, though a bit tough.. but it's really important to expose this stuff for awareness.

(Press articles about what happened to me here)

The Last Go Fund Me:

Two years ago I was on CTV news discussing MAiD (medical assistance in dying) myself, though at that time I was taking a different pain medication which was not very effective so I was suffering in pain much more than I am now (though I am still in some pain.) I did indicate then that I'd re-evaluate where I am at in 2 years to see how I feel about MAiD.

Since the new pain medication I am on allows me to at least do more (rather than rot away mostly in bed) life really feels worth living. But, I really have reached the end of my rope much more than it looks in terms of finances and this is causing my health to begin to regress. I have to confess that I have been fighting to live a lot more than people know. In order for me to be able to live humanely I absolutely must improve my finances, and again, I am trying to (long term) do that myself, and actually put in impactful work that I can do, am good at doing, and enjoy doing.

Now, two years ago, whence being on the news, I did a Go Fund Me which was geared at attaining money for a surgery in order to fix a very painful EDS complication I am stuck living with: I have Atlantoaxial Instabiliy (AAI) so C1-C5 instability, in my neck…This basically feels like an ongoing toothache in the back of my head, and on bad days I call it “axe head.” I have to be on methadone to not lose my mind from this pain, though luckily, I am functioning better than some people who also have this problem.

My degree of C-spine instability is mild to moderate, so pain and some MS-like weakness and fine motor trouble is my main problem. Some people with this are dangerously ill, can barely get out of bed, and have bowel and bladder incontinence etc .. Though I do suffer from some mild retention (the opposite) with that, I can call my AAI ‘semi-functional’ .. but it is still extremely painful and I would still love to have it fixed as it really holds me back in life. Not only that, there is a possibility that it could get worse. However, I am, once again, hoping to get into a life position where I’m earning the money so I can afford going to Spain and getting this done.

This is because I have since learned that the neurosurgeon I was looking at in Poland is not able to help because my friend who went to him ended up needing to have her fusion redone by the specialists in Spain. So if and when I am able to afford the neurosurgery I am best off to go to Spain. The price of it in Spain is higher than Poland, but, still significantly lower than the US prices (which are astronomical.) My intuition tells me to go to Spain, as well. My intuition is rarely wrong!

However, the priority will still be affording my own better place to live, because this place is inaccessible and there’s no way I could recovery from a surgery like that whilst living here!

So, the goal for the last GFM was 50k even though the surgery itself (in Poland at the time) was priced at only a fraction of that (15k) The rest of the funding was indicated to be for the travel, accommodation and both pre and post recovery. This time, I am not raising for surgery. I realize that without long term support and living arrangements changing and improving this won't be too sustainable.

However, the funding raised back then was also in part meant to help with better food quality and being able to better afford supplements so that I could improve my health and be better prepared to undergo such an invasive and risky neurosurgery like that. Though I am extremely grateful to all who donated, I only managed to raise 8k, less than a 5th of the goal.

Therefore I was only able to use the funds for the last purpose mentioned - for supplements and specialized diet - but not to get to Europe or undergo the surgery.

I felt like I’d somehow “failed” those donated, however, I would like to say that I definitely did succeed in at least improving my health and becoming stronger, thanks to what I did raise… I even returned to the gym which I never through I'd do.

However, most recently and frustratingly, I have been regressing and haven't been able to get to the gym :(

Sadly, my previous GFM has run dry at this point; I had to dip into the previous GFM monthly , in order to afford my supplements/uncovered meds as well as the utilities - especially after my 18 year old son had to move into a special needs group home due to his mental health becoming too much for me to handle on my own. This was a very difficult and painful time and like I said I lost nearly half my income which was rough and still is rough.

To make matters worse, the PWD office made a grave error - they failed to update my rental portion to a single person rate ; for EIGHT MONTHS! It was to be documented as single, because my younger son Elliot, who is 16, was at that point with his dad more often (though since, his dad moved further away so Elliot has been with me more than half the time because I am closer to his school.) Shockingly for 8 months PWD jipped me 250.00 on top of losing the income with the loss of Pearson (my older son.) I did not discover their error until April, and demanded they change/update it.

Unbelievably they are currently refusing to reimburse me the 2k (250 times 8) they denied me for 8 months, though I am fighting that with a legal advocate. This might take awhile though.

Right now systems everywhere are messing up, making idiotic mistakes that negatively impact vulnerable people, and it is just really ridiculous. The post pandemic world is a rough one at this time, and I know I am not the only one affected.. I hope this is just a modern dark age and we will get to our “Renaissance”

I would love more than anything to be a part of this renaissance and ( consider myself very much a Renaissance Woman… I feel a bit ahead of my time. This is what my work entails, and I feel passionate about that. It keeps me going, enough to even brave the waters in spite of the currently unsettling social climate (and a very vicious hater who has been fixated on hating me - guess they don’t want to see me grow)

Now, I know ableists will criticize me for ‘demanding free money’ and whatnot but please do keep in mind that I am genuinely unable to work outside the home due to a progressive and incurable genetic disease which is not my fault, and that in spite of this I am trying to develop a freelancing work-from-home plan.

I absolutely must develop a successful plan to work from home and get paid enough to exceed what I get on PWD because again - For disabled people, due to our increased needs and thus increased cost of living, PWD is simply not enough to live right now - more than ever due to the current economy. Again, this is why many disabled folks are doing MAiD (which is disgusting and unacceptable.) Now that the GFM funds have completely run dry for half a year now, things are tougher than ever for me and I am beginning to experience this bad regression in my health - which I worked so hard to improve.

Now I also know I may also be criticized for keeping my pets in this situation, but please do keep in mind that caring for them is an utmost priority - even making food for them from scratch, and, I suffer with severe complex post traumatic stress and my ‘babies’ help me a lot with that - I adore them like my own children and I’d rather die than have to give any of them up, though it’s a risk at this point. I love my babies so much and part of my dream is to be able to have the means to provide them quality vet care whenever they need it. Right now, I have an at-home naturopathic veterinarian tool kit, but still, it really is not ideal. I feel terrible about not being able to give my babies the best. This is another reason I absolutely must improve my income.

Luckily, and in part thanks to donors, my health has come a ways from where I was – though I am indeed still afflicted with ongoing EDS complications and this will never change (but I am better at fighting it and living with it.) I have gotten better at rising above, as well. However, I am currently very much at risk to get worse again even back to the ‘severe’ place I was in - especially if I continue to struggle in extreme poverty..

In the meantime without surgery, however, I am conditioned not to turn my head too much and am just doing my best to live with the CI (cervical instability) - I sleep in a Vista collar at night so I can traction and ‘decompress’ my spine in my sleep, which somewhat helps. I know if I don’t do this for a few days I suffer, so I try to make sure I put on my collar and dial it up before falling asleep.

I have learned various ways to cope, and the surgery prospect can only be successful if I first have a better life and living stability anyway .. all I need is a boost to help me help myself out of the difficult and completely unsustainable (if it keeps going this way) situation I am stuck in.

I don't want my life to be over now, and many like me have (disgustingly) felt forced to take the back door out via MAiD (medical assistance in dying.) Many like me are going without eating more than once a day, because they can’t. Even food banks are run horribly thin. A lot of disabled people are doing MAiD…This is basically eugenics. I don’t want to do that. I want a life that I can be proud of, that I can leave as a legacy, and leave something for my children and their children. Over the years I have tried endlessly though I was a little confused at times about my identity and what I wanted due to trauma.

Today, I am clearer than ever about who I am, and ready to go back out there as myself with my vlog project appropriately named Dreamer Queen Not Under the Machine (named after my music and album names.) The nutrition course which I mentioned above will enable me to consult online via Zoom/Skype or by phone. I am working on that, the documentary, my videos, and more, hoping to launch in the fall. It’s just been slow and help back by my deep financial struggles. I have also been a freelance model. Out of desperation, I started on OnlyFans account. However, I would like to emphasize that because of my personal limits with it my earnings have been and will continue to be quite limited - I am unwilling to compromise my dignity or reputation to go beyond my limits.

Please consider helping in any way you can. It’ll mean the world to me. A boost is something that would help me massively so much right now and my life may depend on it.

Thanks again for your time if you read this far.