US$4,116.00raised of $45,000.00 goal goal
Friends/Family, rarely do I ask for help; however, this is a cause dear to my heart. Sol can really use your help. If every FB friend I have donates $25 (less if you can't, more if you can), we can make a real difference in her safety, security and life. Thank you for taking the time to read her story...
After nearly 35 years of navigating my frequently hidden disability alone, I am reaching out for help. My chronic condition—relapsing and remitting Multiple Sclerosis (RRMS)—has left me in an ongoing medical struggle and has jeopardized my ability to afford housing and to thrive.
For those who don’t know, MS is a chronic, unpredictable condition of the central nervous system (CNS) in which your immune system attacks myelin, the protective layer around nerve fibers. When myelin is damaged it causes the nerves to become inflamed and makes it difficult for your brain to communicate with the rest of your body. Some of my RRMS symptoms:
Sensations of numbness, tingling and burning, fatigue or unrelenting exhaustion caused by nerve damage (MS fatigue occurs daily, is unpredictable, is not relieved with sleep, is aggravated by heat and humidity, and most interferes with daily functioning and the ability to work), muscle weakness, muscle stiffness, difficulty moving, depression, problems with coordination or balance, vision problems, heat sensitivity, shock-like sensations when bending the neck forward (Lhermitte’s sign), and most serious for me, cognitive damage to executive functioning, slowed information processing , difficulty organizing information, impaired memory, attention span, planning ability, decision making, understanding and concentration, impaired verbal fluency and visual-spatial ability, visual fogginess, cognitive fog.
My Story- what shaped my fight with M.S.
My father a brilliant man and talented artist, was diagnosed with primary progressive multiple sclerosis (PPMS) when I was 5. I grew up believing M.S. robbed one of dignity, family, friends, creativity, mobility sight, continence, energy, love, and intellect—that it was a thing to be loathed and feared and that, as with my dad, it evolved into a horrid, isolated life and death.
My father was living in a public nursing facility when, at 22, my M.S. diagnosis was confirmed. Three years later, my father died emaciated, completely disabled, and alone in that nursing home.
Determined not to become like my father, I sought out myriad therapists and non-traditional medicines. I became a health, wellness, yoga and fitness addict and advocate, later utilizing my personal experience and knowledge to augment my work as a social worker which I have done as much as my limitations have allowed and for which I have always felt wholly grateful and honored I have the privilege of witnessing and assisting others in their healing journeys!
What has also been both a privilege as well as a detriment is that I have been able to keep my disability hidden. When exacerbations produced temporary buy visible limitations such as paralysis in one side of my body, double vision, and an MS gait, I hid myself away, dosed myself on 200mg steroids/day or 1000mg IV steroids/day, visualized and meditated until the exacerbation resolved and I could work and engage without being “discovered.”
My system is unable to tolerate any MS-modifying drugs so following each exacerbation, I became more steadfast with my wellness rituals, my health regimens, supplementation, research, biking, walking, kickboxing, yoga, meditation, and weightlifting, and attempted to control and shrink my world to prevent further decline.
Seventeen years ago, when I was 40, my neurologist told me I was somewhat of a miracle, that my diligent practices had shrunk some of my lesions and I’d achieved full remission. He was convinced my disease had “burned itself out” and that I would not acquire any new symptoms I’d not already experienced.
Unfortunately, six years agao, while experiencing a series of profound losses and after having been denied stem-cell treatment due to the length of time MS had been scarring my brain, I relapsed and suffered a series of exacerbations that resulted in profound instability in all areas of my life. I can no longer hide my illness or manage alone.
The Help I Need
I need stability and less stress to survive and to have any chance of thriving. Through years of radical self-care, I know that I need 3-4 hours of cognitive, physical, emotional, and energetic practices/day to achieve minimal cognitive clarity and functioning, to maintain some semblance of social normalcy and to foster continue connection to my purpose of helping others to heal.
I have always trusted, espoused, and valued self-determination, daily gratitude, self-compassion, love, and acceptance and have been and remain a warrior of strength, resilience, optimism and hope, AND my situation has become critical, I have no backup, (both parents suffered early deaths due to illness), have done everything I can and I must acknowledge that I need financial support to change my current trajectory of rapid decline.
With assistance, I have been able to apply for a loan for a fixer-upper in Chicago that could provide me with stable housing. With adequate financial support, I can secure and turn the fixer-upper into my permanent home, have time to heal myself and transition the emotional and energetic demands of my part-time work into creating mental health and wellness resources, a viable new way to help others and support myself.
Asking for financial assistance is so difficult, but I see no other alternative if I unlike my dad, will have a chance to thrive with M.S. rather than die from the impacts of this horrible disease. Please help me to live life and to continue to live my purpose. And please accept my heartfelt appreciation for your kind generosity.
**** TO AVOID Platform FEES, PLEASE DONATE DIRECTLY TO paypal "friends & family," [email protected]
- Tara Ayres
- Sol Chemin
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