Help FF-PM Turned Disabled Longhauler & Single Mom

Hi, my name is Karyn Bishof. I am creating this fundraiser as I am now out of options after 18.5 months of making it through! I am a single mom to an amazing 12.5 year old boy and I have been sick since March 15th 2020 (nearly 19 Months) when I contracted COVID-19 while working as a firefighter/ paramedic in South Florida. In April 2020, I lost my job, and I have not been able to return to work since. I am a COVID-19 Longhauler. A Longhauler is someone who had COVID-19 but instead of fully recovering, we are left with long-term symptoms and secondary illnesses which are debilitating, lack treatments, have no cure and are vastly misunderstood, lacking research and specialists. It is estimated that between 25-50% of people who get COVID-19 become Longhaulers despite the severity of their acute illness (some are asymptomatic while most are mild-moderate and not hospitalized.)

Unfortunately at 18.5 months in as I write this, I still suffer from over 85 symptoms and have developed a ton of secondary chronic health conditions including:

POTS- Postural Orthostatic Tachycardia Syndrome is a form of dysautonomia — a disorder of the autonomic nervous system. This branch of the nervous system regulates functions we don’t consciously control, such as heart rate, blood pressure, sweating and body temperature.

ME/CFS Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome is characterized by profound tiredness, regardless of bed rest. Its symptoms may worsen with physical or mental activity. CFS can happen suddenly and last for years. In addition to severe fatigue, symptoms include light sensitivity, headache, muscle and joint pain, difficulty concentrating, mood swings, and depression.

MCAS Mast Cell Activation Syndrome causes a person to have repeated severe allergy symptoms affecting several body systems. In MCAS, mast cells mistakenly release too many chemical agents, resulting in symptoms in the skin, gastrointestinal tract, heart, respiratory, and neurologic systems. Mast cells are present throughout most of our bodies and secrete different chemicals during allergic reactions. Symptoms include episodes of abdominal pain, cramping, diarrhea, flushing, itching, wheezing, coughing, lightheadedness and rapid pulse and low blood pressure.

SFN Small Fiber Neuropathy A small percentage of patients with SFSN experience sub-acute onset sensory disturbances diffusely over the whole body, including the trunk and sometimes even the face. These patients have non-length-dependent SFSN and almost all cases are idiopathic. The symptoms of small fiber sensory neuropathy are primarily sensory in nature and include unusual sensations such as pins-and-needles, pricks, tingling and numbness. Some patients may experience burning pain or coldness and electric shock-like brief painful sensations.

Fibromyalgia is a condition that causes pain in muscles and soft tissues all over the body. It is an ongoing (chronic) condition. It can affect your neck, shoulders, back, chest, hips, buttocks, arms, and legs. The pain may be worse in the morning and evening. Sometimes, the pain may last all day long. The pain may get worse with activity, cold or damp weather, anxiety and stress. chronic pain is the most common symptom. The pain most often affects the muscles and the points where muscles attach to bones. It may feel like burning, soreness, stiffness, aching, or gnawing pain.

EDS Ehlers-Danlos Syndrome The underlying concern is the abnormal structure or function of collagen and certain allied connective tissue proteins. They are generally characterized by joint hypermobility (joints that move further than normal range), joint instability (subluxation (partial separation of the articulating surfaces of a joint)) and dislocations (full separation of the surfaces of a joint), scoliosis, and other joint deformities, skin hyperextensibility (skin that can be stretched further than normal) and abnormal scarring, and other structural weakness such as hernias and organ prolapse through the pelvic floor. In the rarer types of EDS, there is also weakness of specific tissues that can lead, for example, to major gum and dental disease, eye disease, cardiac valve and aortic root disorders, and life-threatening abdominal organ, uterine, or blood vessel rupture.

AND OTHERS…Rapid gastric emptying, lymphadenopathy (suspected for lymphoma but came back clear so that leaves us back at sarcoidosis or something else autoimmune), IBS, insomnia, Sleep disturbances, prolapsed bladder, mixed urinary incontinence, other growths like fibroids and cysts, thymic hyperplasia, pulmonary hyperinflation, chronic swollen tonsils and throat with mild airway obstruction, decrease in vision and hearing and more.

Some of the most bothersome or impactful symptoms, in no specific order are: Tachycardia, presyncope, dizziness, vertigo, nausea, vomiting, shortness of breath, chronic fevers and temperature dysregulation including heat intolerance which triggers all kinds of symptoms itself, rashes and skin infections, palpitations, a chronic daily 6/10+ headache since 3/15/20 that nothing helps (just started injectable med but barely touches a thing), chronic severe whole body pain, stiffness and joint swelling, chronic, debilitating fatigue, tremors, neuropathy, light and noise sensitivity, coordination, incontinence issues and urinary urgency and frequency, inability to sit for a long time due to hemorrhoids, neck and back issues yes unable to stand due to the orthostatic intolerance issues (POTS), bowel issues and abdominal pain that causes nausea and vomiting and inability to even breathe normally, severe unexplained bloating resulting in inability to wear clothes due to the pain/ pressure of the waist band, loss of appetite and eating 1 meal every 24-36 hours, chronic sore throat and cough causing hoarse voice, insomnia and sleep disturbances (2-4 hours a day for almost 18 months), short term memory loss, lose words as I say them, slower cognition/ comprehension, Post-exertional Malaise, neck weakness resulting in additional headaches and nausea- mostly need to lay flat- causing some sores, PTSD. There is no ability as Longhauler and with these chronic illnesses to plan for the next day. Every day we wake up not knowing what symptoms will show up, not knowing how bad they will be, not knowing how long they will last and that makes things even harder. We are at the mercy of what our bodies allow us to do in a day. Sometimes, just taking a shower is all I can do for the day, while other days I can do a 1 hour meeting or phone call. Just driving 20-30 minutes is such a draining thing to do and I need to emphasize that the cognitive efforts are as equally exhausting as any physical efforts. As someone who was always super organized and prepared and ready, being limited like this, every single day, kills me because It's not me and I miss me. I miss being able to be a productive, dependable person, especially for my son.

I have made it 18 months + supporting both my son and I and now I am out of options, and have nothing coming in. For the last 18+ months I lived off my savings, credit cards, my final pay, workers compensation and then unemployment. Workers comp suspended benefits and I have not received any pay from them since December 2020. I am not eligible for unemployment anymore because PUA is over and prior to that the work search requirement was re-implemented leaving me ineligible. I do receive food stamps and medicaid for both me and my son. I just applied for temporary cash assistance which granted me, for a family of 2, a whopping $158 a month to live off of, which does not even pay my power bill each month, let alone the thousands in other bills. I have applied for SSDI and my application is pending. Even if approved for disability, because I am young and do not have years of high income and experience, my monthly amount will be extremely low, and not enough to live off for myself let alone for my son. My sons father was court removed from the home in 2011, and he has failed to support him since. The courts between states do nothing.

I founded the COVID-19 Longhauler Advocacy Project to push for awareness and recognition of Long COVID and Longhaulers just like me who desperately need assistance on all fronts. There are no financial programs available to us at this time or in the works. We focus on advocacy, education and support. You can see some of the actions of the group here . I am hopeful that with the advocacy efforts of groups like ours, Body Politic, Patient-Led Research, Long-Haul COVID Fighters, Utah COVID-19 Long-Haulers and the Long COVID Alliance that we will one day be able to return to good health, participate in life, find and maintain employment and be able to just be the old, normal us. However, we are all extremely sick patients and being our own advocates is really, really hard, but it is the only way to help.

I am asking for help to get my son and I through the next year so I can continue to focus on my health not only for me, but for my son who solely depends on me. He is an incredible young man who gets straight A’s, even while homeschooling himself, and he plays MLS soccer which is an opportunity I do not want to see him lose, especially after working hard for 4 years and being turned away and making it this year! I am asking for help to allow me to be there for my son (and our pup Yona), allow myself to attempt to heal and continue to build my medical case and records and be an advocate for the Long COVID community. I am willing to provide proof of disability, bills and costs if need be.

Goal: $55,000

What does it cover: Power, TV, Internet (homeschooling), water, hoa maintenance, hoa special assessment, property taxes, home insurance, cleaning/ household items for upkeep, dog food, gas, oil, car insurance, repair/new, phone, clothes, toiletries, school supplies, non covered food, soccer, hot water heater, out of pocket medications and medical devices, out of network specialists at hundreds a pop, credit cards.

I have no ability to work and I have exhausted all options. At this time there are no assistance programs available to assist Longhaulers like me and their families. I am grateful for any help you are willing to provide, no amount is too small. Please also take the time to assist other Longhaulers if you have the ability and learn about Long COVID here and here. Thank you <3

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Donation Amount/ # of People donating to reach goal.

$5- 11,000

$10- 5,500

$15- 3667

$20- 2,750

$25- 2,200

$50- 1,100

$75- 734

$100- 550

$125- 440

$150- 367

$175-315

$200-275