Critical Help Needed While Fighting Long Covid

UPDATE 01/24/2024:

Things have not improved since my last update despite my efforts to try to change that and hopes that it would change for the better by now. My Long Covid status has remained unchanged as I'm still continuing to suffer from persistent effects. mentioned in my previous update. on top of the two preexisting disabilities I already have and manage that are interfering and limiting.

Despite this, I'm still dedicating most of my time and energy working with my SSA Disability Ticket to Work job counselor on intensive job searches for myself. After 8+ months of he providing job leads, I'm still not finding a successful match for myself for a variety of reasons(most have been either jobs go too quickly or I'm not able to provide what they require bc of the limitations I'm dealing with in my current health status). I'm in a urgent desperation mode now as I'm losing the help of a family member that has been helping me since my last update, but that's coming to an end in February that's towards what will be the last month covered for March. It goes without saying how critical it is to remain safely housed where I am so that I can continue to take care of my health, continue to see my doctors, receive meds, continue to work with my job counselor to find a successful job match.

Please donate to my goal(the total is the difference I need in rent & monthly living expenses for 3 months) - or to get me as close as possible to give me time) to help me remain housed to continue to do those vitally important things.

*More update background if you're interested to read further:

My experience is the same reality 10's of millions of others are still living right now as they can no longer work the way they used to or at all, so you lose your ability to sustain yourself like you used to. There are still no policies, safety nets, programs, funding, or even intensive research going into Long Covid for those suffering. The Social Security Admin doesn't currently recognize Long Covid as a disability and thus people are left with literally nothing. If you are disabled enough unable work at all or work enough to sustain your basic needs and there are no safety nets, you're essentially being left to suffer with no support and essentially being told go in a corner and die slowly and silently out of view.

I am thankfully not completely bedridden by fatigue, as many others are, that can't even get out of bed and need daily assistance because their fatigue is so crippling. That's small consolation as you don't need to be bedridden for Long Covid fatigue to be cripplingly life altering, as it can be with me. Just the fatigue alone is extremely debilitating before even touching on any other compounding Long Covid effects one may have. I'm at least capable of managing to still take care of myself on a daily basis with some capacity to work, although it's limited. My activity level is greatly limited now, and I have to go at a much slower pace and take longer to do what I used to. I do experience PEM(Post Exertional Malaise[Fatigue]) after physical exertions such as attempts at exercise, extended apartment cleaning, including activities where I'm not physically active like sitting at my pc but having to be heavily mentally focused, needing to be sharp and alert and engaged for hours at a time, is immensely more taxing. Sometimes I just can't, and I hit a wall and have to stop. Some days are better than others, some weeks are better than others as Long Covid effects come in ongoing bouts. It often exacerbates LC effects after trying to be more active and exerting oneself extensively when I am able.

There are not any long term programs or financial support systems on the local/state/federal level that can step in and provide a vital safety net to catch people. The few programs/orgs that do exist are only one time/one-off emergency assistance that has a high bar of requirements that I don't meet, funding is severely limited, and funding has been further gutted and reduced by legislatures with bills led by the Republican party to vastly reduce and/or eliminate programs altogether.

Recently on January 18th, there was a Long Covid Senate Hearing led by Bernie Sanders that was made possible by all those who took part in the effort with the Moonshot movement demanding research funding and support for those suffering from LC. You watch the hearing that took place to learn more and also can get involved and help with the effort by going to the Long Covid Moonshot website and their social media @LCMoonshot on Twitter/X.

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UPDATE 05/27/2023:

As some of you may know, I’ve been struggling with chronic Long Covid illness, on top of managing my preexisting health condition, for nearly a year as of this coming July since I had my first Covid infection. It's been a very difficult 11 months of trying to recover and has been difficult maintaining the ability to do work consistently or enough. When I caught Covid in late July 2022 (I was triple vaccinated), I had no idea I would end up with Long Covid and then also be diagnosed with POTS(was tachycardic when changing positions which stopped since being on beta blockers), CFS, PESE, High BP issues(having to go on BP meds).

Along the way, I’ve had great care with my doctor, but as he said and is widely known at this point, the healthcare professionals are still learning about Covid and its effects. As much knowledge as they have gained in the last 3 years, there is still so much they don't yet know. What's clear is that it's disabling 10's of millions in the U.S. and with each subsequent reinfection, it greatly increases the chance of becoming a Long Covid sufferer. I’m still dealing with on-and-off bouts of fatigue (I often need to rest in bed after exerting myself), shortness of breath (from walking or talking too much) brain fog (trouble focusing and difficulty holding short-term memory), lightheadedness from time to time, trouble sleeping on occasion, and post-exertional symptom exacerbation(PESE) as I mentioned above (exercising or doing too much makes my symptoms worse). Previous to the Covid infection I exercised moderately 3 days a week(4 or 5 days if I was having a good week - my preexisting managed health issue limits that along with the chronic stress and anxiety that accompanies the very precarious work and income that already existed for me).

I was hoping to be better by now/recovered to the point a year out to where I was before the Covid infection last July to be able to attempt working at least the way I was previously around 20-25 hours a week, my upper limit. The SSA Ticket to Work Program to help disabled people find and be matched with work is turning out to be a disaster both in that they don't have jobs for people experiencing what I am, but just generally completely ill-equipped to deal with what Long Covid is doing to disable people. People experiencing LC can't work reliably, consistently, nor meet the demands of these companies, which are mainly 98% high-paced, back-to-back, high-stress, heavy workload, mentally distressing customer service-based jobs.

I was hoping raising money would not be needed because of this, but I feel overwhelmed, have limited options, Social Security Disability doesn't have a rational formula for providing enough money to live on for disabled folks, and there are no support systems for people being disabled by Long Covid(unprecedented numbers both applying to SSD benefits and being rejected). I have reached the point where I have no choice. My mother has gone well above and beyond to help me and I want to reduce her stress. What I’m raising will go toward groceries, partial rent, and my meds, which adds up to about $1,050 a month. Less financial stress will also enable me to focus more on healing and recovery. Please share this fundraiser with others, and if you can donate even a small amount, it would mean the world to me. Thank you to everyone who took the time to read this.

With Love and Gratitude

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UPDATE 02/23/2023:

I have received help from a family member to help stabilize my rent for remaining housed for now, but I'm still struggling with being out of consistent work, at the only place I can work in my disability circumstance, where I am contracted. I recently received an email from our project manager that there will be large amounts of work coming but not until likely mid/late May. I still need help with food & remaining monthly living expenses until that time. I also had to have unexpected emergency oral surgery very recently which was $480 that I took from what was supposed to be food money and still recovering from that. All on top of still dealing with long covid which damaged my immune system heavily and currently is causing a sudden onset episode of high blood pressure that's had to put me on bp meds as I continue to recover. I truly appreciate any donations and/or shares of my GoFundMe that can help me reach my remaining goal. Thank you!

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Some of you may or may not know, but I'm a pre-existing dual-diagnosis disabled individual living on a fixed limited Social Security Disability income with a limited ability to work from home. I am now also dealing with a slow recovery from a covid infection with a long covid diagnosis. I'm asking for urgent help as I am experiencing a simultaneous larger-than-expected rent increase and unexpected lack of work for two months by the company I work with. This is now causing me to face sudden housing insecurity & the possibility of homelessness due to this with the coming year's rent for 2023, which starts January 1st.

I have also experienced an unexpected two months without work for the last two months in the part-time remote work that I have as a contracted remote worker. I am contracted with a gig economy type job as my only work-based income that I can manage with a disability, with work to start back up in the near future, but project work scheduling comes with short notice for the start and stop of project work. Work will not begin again for a few weeks possibly, and I'm caught in an unexpected gap putting me in a crisis until work starts again, which could likely go into January or longer and get back on track from there. I'm asking for help covering some of what I need for the coming rent and a small additional amount to help with my bare minimum monthly living expenses/food that I need to get through until work starts again.

I currently live in a safe and clean apartment in a secure location with accessibility to nearby food stores and local resources. More importantly, I am well established with my current doctors, meds delivered here, and other medical resources while maintaining my freedom of independence and ability to maintain my daily life.

I genuinely appreciate your help and support. If you can, please also support local mutual aid organizations, leaders in your immediate communities & states, and those that support and will fight for housing as a fundamental basic human right for each American. Thank you for taking the time to read my story and helping me remain safely housed.