￼Hello and thank you so much for reading my story.
My Chronic Disease
My name is Christina Wong and I suffer from a complex chronic disease called Central Sensitivity Syndrome. I had my Big Crash (when my system first went fully haywire) when I was 25 years old and now I am 30. In very basic terms, my Central Nervous System (brain and spine) is abnormally sensitized, which significantly impacts my body's ability to function. I may look like a healthy, able individual but in this case, looks are incredibly deceiving and this is an invisible illness that has completely derailed my life and left me quite disabled.
If you click on the above link to read a basic overview of CSS, I currently have eight of the listed syndromes that fall under CSS. Essentially this disease is shutting down my body's ability to function, to eat, to sleep, to do basic self care.
Just Some Of My Symptoms
From the moment I wake up, I am met with an onslaught of symptoms which include pain (my brain interprets the sensation of touch as pain so anywhere that I make contact with anything, even my head on my pillow, is painful), crippling fatigue, periods of severe cognitive dysfunction and brain fog, persistent nausea that will last for months on end, neuropathic itchiness, the inability to regulate my body temperature, heightened sensitivity to light and sound, a malfunctioning digestive system, migraines that last upwards of two weeks, and the list goes on and on. I have also been medically advised against getting pregnant until my functional capacity is significantly improved and that day seems so far away at this point.
I have seen many doctors, been accepted into the Complex Chronic Diseases Program at the Vancouver Women's Hospital, been prescribed a mountain of medication and nothing has helped to stop or reverse this condition. The program at the Women's Hospital is more about managing and learning to live with this disease rather than curing it because there are no known cures at this time. I have been religious in following their advice. The medication, with their many negative side effects (which were sometimes worse than any benefit), was only able to reduce a portion of the symptoms I was experiencing while the underlying condition has been continuously getting worse over the last four years.
Now entering my fifth year since my system fully crashed in January of 2014, and being sicker than ever before, I am at my wits end. I struggle to get out of bed to do simple things like taking a shower or brushing my teeth. And when I do, I don't have much else left in me to do things like prepare myself food, let alone get the groceries. I have been reduced to spending 20+ hours a day in bed and my situation is only getting worse by the day.
Floating / Sensory Deprivation
There has been one thing that has enabled my body to start to feel better and I need to explore this option further. This experimental treatment is called floating or sensory deprivation. This is what is leading me to my cry for help. I am looking to raise funds so that I can start floating on a daily basis to see if I can make daily gains in improving my functional capacity. I have tried floating at a local float center called Float House and have experienced the positive benefit of floating but I need to take it to the next level.
With these funds, my aim is to purchase my own float tank and create an environment that is tailored to the very specific requirements of my body so that I can maximize the effects of floating. I am hoping that this is what saves my life.
I Am Completely Broke
Any support that you can provide would be appreciated one million times over. More than I could ever express. My husband and I are in such a desperate financial state because this illness hit before we had really gotten our lives started and before we were able to build a financial foundation.
I got sick less than two years after graduating from university, so I had barely any savings and a substantial amount of student loans, whose payments quickly depleted my account, along with having to pay for medications out of pocket. I was advised by my doctor to stop working because I was physically incapable and risked being permanently bedridden. I haven't been able to work in over four years. When my bank account inevitably went into overdraft, I was forced to close my accounts and cancel my credit cards. That was a low point for me. I even started selling our belongings on Craigslist to try to earn some money to help cover some of my expenses. That was another low point for me. The timing of when I got ill was so unfortunate, even my husband was still in school finishing his degree when I got sick and had to stop working.
This story is getting too long but essentially, he only really started working this past August 2017. We don't have much in the way of savings, we still have his large amount of student loans to deal with, and the pressure is on him to cover a significant amount of my current and future expenses (I really need to find a way to afford assistive devices such as a shower chair and wheelchair).
I Need A Healing House Of My Own
We don't even have our own home - we live in my old bedroom at my parents' house, where I had to move back to so that I could be looked after. We are saving for a small house in a small town (my system just can't handle being in a large city anymore) that we can move me into, where I can live largely in isolation in a reduced sensory environment and where I can install a float tank. But this seems like an impossible feat at this point that will take far too many years to achieve on our own. And I don't know how much longer I can survive just existing like this, trapped in one bedroom, and continuing to lose function. I want to get better.
The Tip Of The Iceberg
When it comes down to it, $30,000 is nowhere near what I need but it will be a huge help in getting me started and empowering me to take further action to improve my health. If Peter and I, through his job and my fundraising efforts, ever manage to put enough together for a down payment on a very cheap rancher on Vancouver Island and purchase a float tank, there's so much more I still need to figure out to support my ability to live. And I just want to share that with you so that you can better understand why my campaign goal is as high as it is currently.
Some of these things include: a wheelchair when I want to leave the house, a walker (essential for my safety if I go out alone and choose to walk), a shower chair to sit on in order to shower, hundreds of dollars worth of medications that need refilling every few months and that we've been having to pay out of pocket because I don't have insurance or health benefits, funds for taking taxis if I need to leave the house for food or medical appointments or to call the ambulance in an emergency when I'm living alone and have no one to assist me, a way to finance food delivery and meal prep services for the periods of time that I'm bedridden and unable to make my own food, equipment and tools I need for daily living like electric jar openers (because I'll be living alone and am often too weak or in too much pain to manage opening things on my own) and some sort of food processor when I don't have the energy to chop vegetables, and even a way to pay for in-home treatments like physiotherapy because I'm continuining to lose muscle mass and experiencing exacerbated pain from spending 20+ hours a day lying in bed.
It's overwhelming thinking about how much support I need to function and make it through a day but I'm determined to get there and I am so deeply grateful for your help.
If it is possible that my functional capacity can be improved with daily sensory deprivation then it is my goal to help others who are suffering from similar illnesses to enable them to get back on their feet. All I have ever wanted to do is help people and losing the ability to do so has been devastating for me.
Please Help Me
I know this is a big ask, especially if you are someone who doesn't know me, but your help could literally change my life. It could give me a chance at regaining some quality of life, living a fulfilling life, and finally be able to be a contributing member of society again.
Thank you with all of my heart,
- Yvonne Zadra
- Jo-Anna Nicolato (Stokovac)
- Jessica Cheung
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