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Kelsey Cannot Afford to Fight Fibromyalgia After Valentine's Day: Her 26th Birthday
I will not be able to afford critical medical care for my chronic, incurable neurological condition after my insurance coverage ends on my birthday. My quality of life and ability to find work that will sustain my future medical needs depends on your help today. Reaching this goal will provide up to two months of medical care while I work to overcome unexpected obstacles and delays to accessing state insurance.
How fibromyalgia decimates my life,
my daily fight to truly live,
and why your help decides whether I walk or crawl:
Cold winter light filters through your icy window as your morning alarm jingles, much too loud. You hit snooze, and tendrils of pain and chill clutch your joints. You're so tired; your eyes can barely focus on the screen of your phone as you text your boss that you clearly have the flu, so you'll be staying home. You fall back asleep, believing that if you just sleep it off, you'll be better in a few days. If only that were true.
By the time the frost has melted from the air, the only time you leave your house is in passenger seat of the car that you used to drive, as your partner shuttles you from specialist to specialist. None have had an answer yet, just suggestions for more painkillers and yet another referral. You can't stay awake, and frankly, you don't want to be awake, because every joint, muscle, and body part that you can't identify hurts. Your skin feels like it is crawling with beetles or on fire, sometimes both. You can't remember conversations your roommates say that you had an hour ago. When you can think, you wonder how long it will be before you lose your job. Well, you can't even command your body to get up to make food, let alone contribute to a team.
The world is grey and full of triggers to new symptoms. Honking cars and other loud noises that you once brushed off now make you jump; the world is an overwhelming cacophony of sudden movements. You keep looking for the reason behind your crumbling existence, even just a hint, just a pill to make it better, but it has been months. Everything you'd put your years in to has fallen to bits because you can't even read your email. You have begun to wonder if it's worth anyone's time to keep looking because there might not be an answer. Maybe they should just let you sleep.
In June, you find out that you have fibromyalgia, a neurological condition not yet fully understood by medical science. It can be partially managed with medication. There is no cure.
This was my experience from January through June 2014. In less than six months, I went from organizing music events, volunteering, working as an executive assistant, and running my own graphic design and photography business to alternately asleep or dizzily stumbling in increasing pain and confusion. Once I received my diagnosis, my doctor prescribed medication to begin to mitigate my symptoms. Because fibromyalgia is still not understood, there is no single medication to treat all of its effects. It takes five different daily prescription drugs to bring me back to a passable level of functionality. Several of my prescriptions cannot be automatically refilled, so I must return to my doctor's office monthly to maintain my supply and have medication levels adjusted as my body builds up resistance.
Most days, I appear to live a normal life despite the ambient pain and bizarre neurological phenomena that break through the medications, which I have been able to reduce through dietary supplements as well as mental and physical conditioning. I still have days when I wonder if I should go to the ER, but losing one day in a month due to a flare-up is better than having only one functional day in a month. Occasionally walking with a cane is better than crawling through my apartment because I'm too dizzy to stand up. Due to the daily medical support required, my restored life comes at a high price, which up until now, was mostly covered by my family's insurance. That life-sustaining coverage is about to end.
In August, my partner and I moved from Boston to California, in large part because the wet, cold climate of the Northeast aggravates my symptoms. For five months, we lived in a teardrop trailer the size of a large SUV with no bathroom while looking for work. During that time, I was able to succeed at a short-term job and regain confidence that I could be a reliable employee. Finally, we acquired a CA address and thereby the theoretical ability to access state services when my partner landed a better-paying job.
Since moving out of the trailer in January, I have been looking for work and watching the days count down to my birthday, when I will lose my family's health insurance coverage. It has become increasingly clear that there will be a significant gap during which I will be uninsured due to unexpected obstacles and delays related to accessing state health insurance. I will not be able to afford any of my critical medical needs during that gap. Without medical care and medications, I will once again be reduced to an existence of bed-ridden pain and confusion, a condition that will prevent me from finding work that can sustain my medical costs and thereby perpetuate itself indefinitely.
Since I was a child, my medical needs have been covered by TriCare, the US military's health insurance provider, but that coverage will end abruptly at midnight on my birthday. My late father was a veteran fighter pilot in the US Air Force, and it was through his service that his family received military insurance benefits. He paid a lifelong price beyond measure for those benefits, but they will not cover his daughter for life, no matter how critical her need nor the consequences of withdrawing those benefits.
I will be financially blocked from receiving the medical care I need during the inevitable gap in insurance coverage, unless you can help me. I have no ability to pay out-of-pocket for even one of my medications or a single doctor's appointment. My GoFundMe goal of $7,200 will cover up to two months of my medical needs without insurance. Without your help, without medical care, my life will rapidly degenerate to endless days in widespread pain, unable to get out of bed and without the ability to even think whilst lying there. I will not be able to find a job to return my situation to financial sustainability if I cannot stand up to make it to a job interview.
I'm about to lose everything that I have dragged back from the clutches of fibromyalgia: my mind, my ability to step outside and smell the air, the freedom from pain that allows me to conceive of calling friends and family members or just ask my partner how his day is going. It has all come down to the cost of sustaining my quality of life, which I will be able to carry on my own once I have a consistent job, but only if you can help to carry me through these next two months. A contribution of any amount literally buys me time to live the life of a woman in her mid-20's, not her mid-90's.
Thank you for reading my story. If you contribute, you know that you have my gratitude. Whether or not you can help monetarily, please share this page with those you know. It's as easy as sharing a cute cat video or list of “13 Things Only a Human Will Understand!” You might help me afford another day during which I might take a quick break from my job search to peak at your next cat video discovery. I will endeavor to update this page as often as is relevant, at least once per week until my access to medical care is secure.
Any funds received beyond the amount requested above will be used to pay off the significant amount of medical co-payments that I have incurred during the months of diagnosing and treating my condition.
Again, thank you.
I will not be able to afford critical medical care for my chronic, incurable neurological condition after my insurance coverage ends on my birthday. My quality of life and ability to find work that will sustain my future medical needs depends on your help today. Reaching this goal will provide up to two months of medical care while I work to overcome unexpected obstacles and delays to accessing state insurance.
How fibromyalgia decimates my life,
my daily fight to truly live,
and why your help decides whether I walk or crawl:
Cold winter light filters through your icy window as your morning alarm jingles, much too loud. You hit snooze, and tendrils of pain and chill clutch your joints. You're so tired; your eyes can barely focus on the screen of your phone as you text your boss that you clearly have the flu, so you'll be staying home. You fall back asleep, believing that if you just sleep it off, you'll be better in a few days. If only that were true.
By the time the frost has melted from the air, the only time you leave your house is in passenger seat of the car that you used to drive, as your partner shuttles you from specialist to specialist. None have had an answer yet, just suggestions for more painkillers and yet another referral. You can't stay awake, and frankly, you don't want to be awake, because every joint, muscle, and body part that you can't identify hurts. Your skin feels like it is crawling with beetles or on fire, sometimes both. You can't remember conversations your roommates say that you had an hour ago. When you can think, you wonder how long it will be before you lose your job. Well, you can't even command your body to get up to make food, let alone contribute to a team.
The world is grey and full of triggers to new symptoms. Honking cars and other loud noises that you once brushed off now make you jump; the world is an overwhelming cacophony of sudden movements. You keep looking for the reason behind your crumbling existence, even just a hint, just a pill to make it better, but it has been months. Everything you'd put your years in to has fallen to bits because you can't even read your email. You have begun to wonder if it's worth anyone's time to keep looking because there might not be an answer. Maybe they should just let you sleep.
In June, you find out that you have fibromyalgia, a neurological condition not yet fully understood by medical science. It can be partially managed with medication. There is no cure.
This was my experience from January through June 2014. In less than six months, I went from organizing music events, volunteering, working as an executive assistant, and running my own graphic design and photography business to alternately asleep or dizzily stumbling in increasing pain and confusion. Once I received my diagnosis, my doctor prescribed medication to begin to mitigate my symptoms. Because fibromyalgia is still not understood, there is no single medication to treat all of its effects. It takes five different daily prescription drugs to bring me back to a passable level of functionality. Several of my prescriptions cannot be automatically refilled, so I must return to my doctor's office monthly to maintain my supply and have medication levels adjusted as my body builds up resistance.
Most days, I appear to live a normal life despite the ambient pain and bizarre neurological phenomena that break through the medications, which I have been able to reduce through dietary supplements as well as mental and physical conditioning. I still have days when I wonder if I should go to the ER, but losing one day in a month due to a flare-up is better than having only one functional day in a month. Occasionally walking with a cane is better than crawling through my apartment because I'm too dizzy to stand up. Due to the daily medical support required, my restored life comes at a high price, which up until now, was mostly covered by my family's insurance. That life-sustaining coverage is about to end.
In August, my partner and I moved from Boston to California, in large part because the wet, cold climate of the Northeast aggravates my symptoms. For five months, we lived in a teardrop trailer the size of a large SUV with no bathroom while looking for work. During that time, I was able to succeed at a short-term job and regain confidence that I could be a reliable employee. Finally, we acquired a CA address and thereby the theoretical ability to access state services when my partner landed a better-paying job.
Since moving out of the trailer in January, I have been looking for work and watching the days count down to my birthday, when I will lose my family's health insurance coverage. It has become increasingly clear that there will be a significant gap during which I will be uninsured due to unexpected obstacles and delays related to accessing state health insurance. I will not be able to afford any of my critical medical needs during that gap. Without medical care and medications, I will once again be reduced to an existence of bed-ridden pain and confusion, a condition that will prevent me from finding work that can sustain my medical costs and thereby perpetuate itself indefinitely.
Since I was a child, my medical needs have been covered by TriCare, the US military's health insurance provider, but that coverage will end abruptly at midnight on my birthday. My late father was a veteran fighter pilot in the US Air Force, and it was through his service that his family received military insurance benefits. He paid a lifelong price beyond measure for those benefits, but they will not cover his daughter for life, no matter how critical her need nor the consequences of withdrawing those benefits.
I will be financially blocked from receiving the medical care I need during the inevitable gap in insurance coverage, unless you can help me. I have no ability to pay out-of-pocket for even one of my medications or a single doctor's appointment. My GoFundMe goal of $7,200 will cover up to two months of my medical needs without insurance. Without your help, without medical care, my life will rapidly degenerate to endless days in widespread pain, unable to get out of bed and without the ability to even think whilst lying there. I will not be able to find a job to return my situation to financial sustainability if I cannot stand up to make it to a job interview.
I'm about to lose everything that I have dragged back from the clutches of fibromyalgia: my mind, my ability to step outside and smell the air, the freedom from pain that allows me to conceive of calling friends and family members or just ask my partner how his day is going. It has all come down to the cost of sustaining my quality of life, which I will be able to carry on my own once I have a consistent job, but only if you can help to carry me through these next two months. A contribution of any amount literally buys me time to live the life of a woman in her mid-20's, not her mid-90's.
Thank you for reading my story. If you contribute, you know that you have my gratitude. Whether or not you can help monetarily, please share this page with those you know. It's as easy as sharing a cute cat video or list of “13 Things Only a Human Will Understand!” You might help me afford another day during which I might take a quick break from my job search to peak at your next cat video discovery. I will endeavor to update this page as often as is relevant, at least once per week until my access to medical care is secure.
Any funds received beyond the amount requested above will be used to pay off the significant amount of medical co-payments that I have incurred during the months of diagnosing and treating my condition.
Again, thank you.