Help Jaxy Get A Wheelchair
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Hello friends!
I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) in May of 2020. POTS causes dysfunction of the autonomic (automatic) nervous system. The autonomic nervous system is vital for regulating many body functions (think heart beat!). When someone stands up the heart rate and blood pressure work together to keep our blood flowing at a healthy pace despite our position. When someone with POTS stands up the body struggles to regulate blood flow, resulting in low blood flow to the brain. POTS causes many uncomfortable symptoms. Some of those symptoms are a rapid increase in heart rate, body temperature, light-headedness, and in some cases fainting. All of which I experience.
I was prescribed, evaluated, and fitted for a custom ultra lightweight wheelchair in 2020 due to fainting and other severe POTS symptoms while mobile. I was told it would take 6 months to get the wheelchair I need. It's been over a year and a half. My insurance has battled me at every turn despite clear documentation of my condition. I've since had 4 wheelchair evaluations. My most recent being Oct. 12 2021. While waiting for my proper and safe mobility aid I was loaned a basic manual wheelchair. I cannot operate this chair without worsening my POTS symptoms and suffering innjury. Since my first evalution my condition has continued to worsen and I now need an extra part to my wheelchair called power assist. This is not a cheap addition. But having power assist will give me the ability to propel myself which is crucial.
Part of the reason I now need this power assist is because in July of 2021 I was officially diagnosed with Ehlers Danlos Syndrome (EDS). This is the progressive genetic disorder I was born with and went undiagnosed/misdiagnosed with until this year. There are a few different types of EDS and I have the hypermobile type (HEDS). HEDS greatly effects the connective tissue and collagen in my body. Because collagen can be found all over the entire body, HEDS can cause many seemingly unrelated conditions. In me it has caused POTS, Mast Cell Activation Syndrome (MCAS), Osteoarthritis, Cervical Disc Degeneration, bulged and torn Lumbar disc, IBS, chronic gastritis, and fibromyalgia. Since HEDS is a defect of the "glue" in my body my connective tissue and ligaments suffer. Every single day I have multiple subluxations (partial dislocations) and total dislocations in many if not all of my joints. HEDS has severely impacted my ability to speak so much so I had to do 5 months of speech therapy to regain facial muscle strength and memory. Today I'm left with minor speech impairments and ongoing physical therapy. My vision began to be affected by HEDS in early 2021 and now I have multiple "floaters", "visual snow", and declining visual acuity.
Because of the progression of my condition and the tendency for my joints to simply "slip" out of place I was prescribed the power assist add on to my wheelchair as I mentioned earlier.
I am hoping that with my HEDS diagnosis being added to my most recent wheelchair evaluation that insurances approves the chair I need. I do plan on appealing if they do not. In the mean time I've had so many wonderful people reach out to me and encourage me to fundraise. I'm very insecure about asking for help but the medical system has backed me into a corner. I have attached the exact cost of my chair (about 6k) as well as the power assist add on (about 7k) ❤.
If you don't know me, Hi! I go by Jaxy and I'm 24. My entire life I've been a relatively sick person. When I graduated high-school my goal was to become a Music Educator. I was in dance, choir, and any type of performance I could get my hands on for years prior to graduating high-school and I had no intention of stopping. I moved to Eugene, Oregon in 2016. I worked 29 hour weeks, went to college full time, and continued to perform. What I didn't know is I had an undiagnosed progressive genetic disorder. My body could not tolerate the schedule and I became weaker and sicker. Eventually I had to drop out of college and lower my work hours. I saw many doctors over the years and had many misdiagnoses. In 2020, right in the beginning of the pandemic I became completely disabled. I could no longer perform. I was laid off from work and to this day I am not capable of returning.
I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) in May of 2020. POTS causes dysfunction of the autonomic (automatic) nervous system. The autonomic nervous system is vital for regulating many body functions (think heart beat!). When someone stands up the heart rate and blood pressure work together to keep our blood flowing at a healthy pace despite our position. When someone with POTS stands up the body struggles to regulate blood flow, resulting in low blood flow to the brain. POTS causes many uncomfortable symptoms. Some of those symptoms are a rapid increase in heart rate, body temperature, light-headedness, and in some cases fainting. All of which I experience.
I was prescribed, evaluated, and fitted for a custom ultra lightweight wheelchair in 2020 due to fainting and other severe POTS symptoms while mobile. I was told it would take 6 months to get the wheelchair I need. It's been over a year and a half. My insurance has battled me at every turn despite clear documentation of my condition. I've since had 4 wheelchair evaluations. My most recent being Oct. 12 2021. While waiting for my proper and safe mobility aid I was loaned a basic manual wheelchair. I cannot operate this chair without worsening my POTS symptoms and suffering innjury. Since my first evalution my condition has continued to worsen and I now need an extra part to my wheelchair called power assist. This is not a cheap addition. But having power assist will give me the ability to propel myself which is crucial.
Part of the reason I now need this power assist is because in July of 2021 I was officially diagnosed with Ehlers Danlos Syndrome (EDS). This is the progressive genetic disorder I was born with and went undiagnosed/misdiagnosed with until this year. There are a few different types of EDS and I have the hypermobile type (HEDS). HEDS greatly effects the connective tissue and collagen in my body. Because collagen can be found all over the entire body, HEDS can cause many seemingly unrelated conditions. In me it has caused POTS, Mast Cell Activation Syndrome (MCAS), Osteoarthritis, Cervical Disc Degeneration, bulged and torn Lumbar disc, IBS, chronic gastritis, and fibromyalgia. Since HEDS is a defect of the "glue" in my body my connective tissue and ligaments suffer. Every single day I have multiple subluxations (partial dislocations) and total dislocations in many if not all of my joints. HEDS has severely impacted my ability to speak so much so I had to do 5 months of speech therapy to regain facial muscle strength and memory. Today I'm left with minor speech impairments and ongoing physical therapy. My vision began to be affected by HEDS in early 2021 and now I have multiple "floaters", "visual snow", and declining visual acuity.
Because of the progression of my condition and the tendency for my joints to simply "slip" out of place I was prescribed the power assist add on to my wheelchair as I mentioned earlier.
I am hoping that with my HEDS diagnosis being added to my most recent wheelchair evaluation that insurances approves the chair I need. I do plan on appealing if they do not. In the mean time I've had so many wonderful people reach out to me and encourage me to fundraise. I'm very insecure about asking for help but the medical system has backed me into a corner. I have attached the exact cost of my chair (about 6k) as well as the power assist add on (about 7k) ❤.
Becoming disabled has been devastating. Discovering the state of the medical system has been even more so. I have been abused, gaslighted, and neglected for years. I have medical trauma that will last a lifetime. I have fought endlessly for proper treatment, and advocated for myself in messy situations that should have never been messy. I don't think anyone wants the word Messy used in regards to their medical care. In July of 2021 I finally met my current EDS specialist who I waited close to 19 months for. She is fantastic and is arranging a knowledgeable and capable care team.
I have so much fighting left to do, and I'm learning I can't do this alone. I think the saying is "it takes a village"? Anything you can donate is immensely appreciated. Even sharing counts. Thank you for your time, thank you so much for reading, and thanks for supporting me while I quite literally relearn how to live.
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Below I've also attached an Amazon list of some of the medical equipment or supplies I currently need and my tiktok account where you can follow my journey.
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Below I've also attached an Amazon list of some of the medical equipment or supplies I currently need and my tiktok account where you can follow my journey.
Updated 12/03/2021 to reflect proper cost of power assist. I had the discounted price in my total not the regular price. ☺️
Organisator
Matthew Mack
Organisator
Springfield, OR