Covid & Lupus: Losing Home. Buying Van to live in!
Donation protected
Campaign Ended: Winter 2020
Most Recent Update: 2024
With your support, in 2020 I was able to purchase all the basics to live out of a van/vehicle and have essential electricity (think enough for heat pads/fans, to keep warm/cool), basic bathroom & hygiene needs for a small space, and a mini kitchen setup and food storage. My parents put their plans to sell the house on hold in late 2020, faced with their own issues (they have asked me not to share, sorry, but just know that they are doing much better!) as well as my ongoing state of severe disability/lack of improvement. I still have nowhere to go and no income, at risk of homelessness when I leave this house, but I have had the safety and comfort of having this roof stay over my head for as long as my parents' plans to sell were in limbo. And you all allowed me the extraordinary relief of knowing I could take care of myself in the most essential ways.
I didn't make enough to buy a van AND keep up with the most basic living expenses through the long months of illness. And hey, 90% of medical related fundraisers never reach their goals, according to GoFundMe themselves. But I was so lucky to get your messages and gestures of support, and I was able to muster through the rest of 2020, 2021, and most of 2022, stretching out the funds and living very frugally.
***See 2020 update section below for more info on what the donations were spent on and to follow my health story/progress in each year since.
When trying to plan and budget my needs and the fundraiser, I never expected my recovery to take so long or for covid to so heavily impact the availability of everything from chest freezers to minivans for so many years. And Long Covid lasted about 2 and 1/4 years for me.
But to be honest, another unexpected issue and delay came up. I started suffering from a long and severe depression in 2021- 2022 when I couldn't get a van (massive shortage!), still couldn't find a primary doctor to take my case, couldn't apply for disability without a doctor and ongoing medical care, and realized how stuck I was and that I wasn't getting better. I lost all hope. And I stopped communicating with others and sharing online. I hope you can please try to understand that I didn't go silent because I was pulling some sneaky move and running off with your money. It's nothing as Hollywood as that. I kind of just fell to pieces and I stopped talking (I didn't even talk to myself anymore!).
Went months in a row with my phone turned off, feeling numb and half dead, still horribly sick and letting it get to me. I couldn't get home health or a gurney transpo without coming in person to prove to a Dr that I needed it, but I couldn't even get out of bed to go to the bathroom (think towels on top of trash bags underneath me). And when I tried to get therapy, I couldn't at the time without a referral from a doctor, which I didn't have, not until 2022.
Please just know it wasn't personal to any of you. The shock of trying to accept my circumstances, after so many months clinging to hope, trying to stay hopeful and keep faith that I would bounce back… all gave way. I had been in some weird personal denial, detached, not fully accepting how bad things were. And when I did see my reality more harshly, I crashed.
Wow, that got heavy. I'm ok. But let's stop there, and if you would like to know more I tried to sum up a bit of it further down. It took me many tries writing this up: so much happened, so much bad, and I convinced myself it was never ok to burden anyone else with this stuff again.
A friend had told me that when you share negative things about your life with others, even if you don't intend to manipulate them, the effect is they do feel manipulated and that MAKES you manipulative. I couldn't handle the realization that people will probably felt manipulated by me, so I just… stopped talking. for years. And if it wasn't for my therapist, you wouldn't be hearing from me still! Gotta get yourself up and try again. :)
Thank you again for all of your extraordinary generosity, kindness, and understanding. It is an understatement that without you I wouldn't have made it at all through long covid. You bailed me out, and lifted me up, when I needed it most. So here's me, forever sending each and every one of you all my love, gratitude, and best wishes.
Thank you.
2024 update
- still my plan! mobile/tiny house, only way I can actually afford living expenses and still pay for healthy enough food and medications that aren't covered by Medi-cal.
- … but now I will have to wait and see if I can get SS so I can buy a van and put solar and plumbing in it.
- summer 2024: my parents are ready to prep and sell house, but it's not like I can physically pack things up, and don't have money required to make a move. Again, dependent on SS case.
- Saw rheumatologist finally- High disease activity of lupus diagnosed. Trying hydroxychloroquine (plaquenil).
- New primary Dr (SHE'S GREAT!) trying to help me track possible sources of my pain and keep an eye on my labs, help me troubleshoot, make plans. :)
- CBEST referral from new Dr, they help people who are homeless or high risk for homelessness apply for SS
- Still doing therapy, slow but steady progress
- Get about 1-3 hours out of bed most days, but better than being totally bed bound like before!!
- Need wheelchair or walker for longer treks, can shuffle short distances some of the time (think bed to bathroom)
- Still struggle with my memory, hard to process and plan things, decision-making still pretty poor
- Did relearn a couple new skills: follow a simple recipe without too many mistakes and keeping track of things on to-do list/much better at remembering to check my lists and add to them when I can!
2023 update
- Struggle to communicate, be organized, bad memory, not doing good job talking to ppl still, especially about health with dr
- Working to establish healthcare, but not making it into most appointments, still bedbound, bad pain
- waiting to get into see rheumatologist to get back on lupus meds!
- My dr got me a case manager (like a patient advocate)
- She helped me sign me up for food bank bc I'm not getting enough meals (meal prep not easy, I'm not up for it hardly ever)
- Enrolled w/ mental health urgent care & got me other resources
- Adult protective services (contacted twice by different Drs bc not doing well) and police wellness check were called about me,
- Cognitive issues and mental health are improved a bit, can speak more fluid, find words, occasionally less brain fog now that on anti inflammatory meds
2022 update
- Fall, got a dr! Begin to establish healthcare again!
- Mental health, anxiety specifically, still pretty bad
- Still not wanting to talk to people and also feel like I forgot how to after so much isolation
- Memory and planning and decision making abilities are still bad but I feel like they have made improvements
- Summer 2022: Hospitalized for 6 days, very ill and severely hyponatremia bc couldn't keep down food or water, 2nd kidney injury (AKI)
- Everyday when I wake up, it still feels like I have a clean slate with my memory, so hard to function when things don't stick in my mind , can't seem to learn new things
- Gofundme donations almost gone! I've been living so frugally and trying to stretch it out, hoping and hoping that things just take a turn, I get better, and boom, I'll be off and running! No luck yet
- Bankruptcy filed, end of 2022 because of credit card debt and no income/donations left. No other choice
2021 Update
- Received last donation end of 2020, thank you!
- Brain fog -> only just realized van purchase wasn't going to happen anytime soon/not getting better
- GoFundMe didn't reach goal, original fundraiser only accounted for “3+ months of living expenses” but I didn't plan for it to drag so long, or know I'd be so sick so long
- Start of the year- very depressed and also started feeling humiliation for all my public sharing of things I normally wouldn't share online, falling for traps and not being safe with my online activity, and posting so much sensitive and personal information, harassing everyone by posting so much
- Struggling heavily with mental health, full crisis of confidence that I will be inappropriate and don't want to bother people with my neverending drama, especially when I come across my old posts or messages
- Tried to hire someone to help with some of the funds I had left. Posted on marketplace, nextdoor, Craigslist even, and asked everyone I could think to ask, no success
- started "van build" binder in 2019, found it again! Has tabs and everything, sections for my blueprint/layouts plans, plumbing, kitchen, shower, you name it. Clinging to it.
2020 Update
- Made purchases with your donations! Thank you so much!! I bought so many things, but a here a short list: chest freezer, a 300 watt / 600 watt peak lithium ion battery pack to power basic electrics and charge my essential devices, a hand crank radio/led light and a powerless hand crank food processor, hot plate to cook on, water storage/dispenser, and instant pot, and other basics for a mobile and low electricity use kitchen setup for the van
- was able to pay for some food, grocery delivery fees, basic household items like toilet paper, laundry supplies, soap, etc., printer ink so I could handle important applications, and a new $50 phone when mine stopped working
- Also bought some basic tools needed for van build, like a jigsaw and hacksaw
- the setup for my bathroom for the van, including a solar shower system and a bucket toilet system.
- Other news: was attacked online after I posted so much personal information, stupidly shared my connect info publically; sent me threats, accessed my bank account, remotely accessed my home pc, got into my Facebook acct and fundraiser, many other accounts π@¢k€d.
- Facebook forcibly shut down my fundraiser as a result, it wouldn't let me post updates on fundraiser page anymore
- writing online was no longer therapeutic, I felt horrible about how much I was burdening others, too painful to share also bc I felt burned out, just fried
- I didn't trust myself because of my brain damage. After a friend told me that I was posting the same write-ups over and over again (for example, I would write and post an update and then I would forget I'd already posted on Facebook and I would post it again, and again, …)
- My brain broke. Drowning in a bubble of isolation, self pity. I couldn't handle social media at all anymore.
- Diagnosed with mild cognitive impairment in 2016, (SLUMS score, 23/30), whatever COVID did to my brain was not letting up and I continued to have severe memory and cognitive deficiencies that did not seem to improve at all in 2020
- But just before winter 2021 I started to notice my first real, significant improvements in my symptoms w/some OTC meds (mast cell stuff) even a bit of relief gave me hope. Then … wow. It just plateaued. I stopped improving.
- At this plateau only able to get out of bed some days for 30 minutes to an hour max all day. I was lucky to make it to bathroom!
Original post from 2020:
Hi I'm Nicole, formerly a college/uni math teacher and data analyst for companies like Intel. My health (lupus, covid complications, organ failure, and more below) has been declining the past few years and I haven't been able to get remote work for my disability accommodations for over 2 years. With disability a long way off, I have spent the last few yours trying to find private and government aid. But all the doors are still closed, so when it was suggested that I try this to find a way to not end up homeless, I realized there was no other choice. I only ask for help because I have no other resources to turn to! Safety nets are not what we would like to think...
My long covid ("long hauler") story was featured in A Rolling Stones Article!
https://www.rollingstone.com/culture/culture-features/covid-19-long-term-long-haul-mental-health-1074330/
All funds raised are going toward the following:
1) Shopping now for $4-6k Van
2) $7-10k "Van Conversion" or van build out (appliances, insulation, electrical/solar, plumbing, even a shower!)
3) $3k toward insurance, mobile mechanic inspection, registration, parking permits, 3 months of gas
I still need to raise about $4k, and every dollar counts! Please only donate what you can, or if you prefer, please help me with essentials on my Amazon Shopping list. As of August 2030, I have no credit spending power left and my current funds are all going toward my new home.
Even $5 counts, as my credit limits were cut in August 2020 and I need funds for EVERYTHING now like food, soap, toilet paper, vitamins, RV appliances and supplies, as well as the wheelchair, gas, registration, insurance, and parking permits.
Hope to buy an RV or trailer, find some public lands/BLM or a private property to park it on while I eek through this... I estimate needing somewhere around $8-12k minimum for a used RV/mobile home. The hope would be to buy one or afford a loan and be able to pay for registration, mechanical inspection/repair, gas/insurance costs for 3 months, and handicapping equipment for the RV (or other mobile home). I used to live tiny for years and miss it. Smaller space means easier to clean and move around in, which is ideal in my condition.
Neuroinflammation & related neuropsych issues from brain swelling caused by virus!
⦁ Smell lost/nose tingles
⦁ All sounds unbearably loud
⦁ severe headache and migraine with light sensitivity with terrible neck, eye pain and pressure
⦁ dark spots, lights, other vision changes (it's scary, me and other covid pts compare notes on seeing spiders everywhere)
⦁ worst case: my vision blurs, double vision, and partial loss of sight (early on this was very bad, for months, every evening at end of day no matter activity level)
⦁ confusion, memory retention goes out the window
⦁ slurring, can't find words, trouble speaking
⦁ time loss/slippage
⦁ Having fixation on negative, anxious, or angry emotions
For me, my worse case I get a high fever in my brain/head and start tremoring couldn't see clearly, speak, process sound, smell, etc. And then... I pass out. Before that, my kidneys and heart go wild and hurt even worse. I become bed bound and can't handle communicating, or even watch movies.
Physical/pain symptoms:
⦁ Fever and chill swings, temperature sensation disruption (things feel cold when hot, for ex, just have to be careful)
⦁ Severe flu like aches in joints and muscles ALL over body, generally for a minimum of 3-5 days
⦁ Burning toes, feet, fingers (like soldering irons held to them)
⦁ POTS/dysautonomia symptoms
⦁ SOB increases and heart hurts/tachy/palps
⦁ My kidneys. They throb, twitch, itch, burn, sharp deep random pains, urine darkens and gets cloudier, shoulder, back pain with limited use
⦁ Swollen masses on chest/armpit region, back of neck w/ nerve sx
⦁ Throat swells, extra sore, difficulty swallowing
Etc.
Since the house I've been living needs to be sold, I was going to live in my car but now it's not running and uninsured. I'm near $25k in debt with no spending power on my credit left and my years of hundreds of applications leave me still with no work. Requesting work disability accommodations and have employment gaps seem to be major deterrents. So it was suggested I try this and I balked. I HATE asking for help and hate getting it even more. But I truly found this was my last resort to abandoning my pets and living in shelters or in my non-op car.
Disability is approved for only SOME of those receiving recent, continual primary care. Long way off, IF I ever get it. In late 2017 I was diagnosed with lupus (I'm immunocompromised). At one point I was taking 26 medications. I have been diagnosed with over 30 different medical conditions. These include endometriosis, systemic lupus, adenomyosis, fibromyalgia, myofasciitis, interstitial cystitis, herniated L5 S1 disc and severe spinal decompression, extensive neuropathy & radiculopathy, migraines, chronic fatigue syndrome, neuralgia, +++
STILL no CBEST/disability lawyer has even taken my case! Such a broken, poorly-funded system. My health continued to decline 2017 to now but first started to worsen in 2014.
I can't afford rent or risk/stress of a roommate w/ unstable health and very unstable/nonexistent income. I need a small place that is easy to clean and isolate in because of mobility and being immunocompromised (especially after 6 months of chemo treatment for my lupus). I have struggled with asking for help and putting someone in the position of living with my limitations/health crises. Hope to get this situated before I degrade physically and mentally further. I am so lucky just to still be here, to still be THIS ok, don't I know it!
If you are someone you know can help in any way? I also need help to hire someone. Physical tasks that I need help with as a disabled person:
-purchase and test drive of RV/van
-moving into RV/van
-sale of my car (may opt to pay mechanic to fix up a bit, in case you can help me find one)
-I need to hire a builder (I can pay full, fair rates!) to build out a step van. Ok working in small spaces, plumbing, elec, full bed, simple pre-built cabinetry, 1 sink, 1 shower, and either generator or solar install.
-PARKING NEEDED! I am still looking for a place to park the van/RV for ideally 3-6 months or more, but even 1 month or so ok! Can pay my share of water, electric, and garbage + small monthly rent amount.
Can pay builder in cash, but also offering barter for your labor with these different tasks -even an HOUR of help means so much to someone like me!
I am trying to stay up on this social media stuff, but I have long stretches where that kind of mental work is not possible.
Please hit the contact button to shoot me an email any time for questions, concerns, or for any of the links mentioned or just to chat! I'm very delayed but I'm dedicated, and it may take me months but I WILL write you back! Thank you so much for your consideration and any support you can offer. As you can see, I need help with many things that don't just involve cash donations, so if you are experienced and looking for physical labor, let me know!
All my best wishes and hopes for your health and safety... <3
Organizer
Nicole Batenhorst
Organizer
Valencia, CA