Covid & Lupus: Losing Home. Buying Van to live in!

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. 

If you are having a hard time choosing how to help, please look into donating cash through this GoFundMe or contact me through this site for my private Venmo information.

https://www.amazon.com/hz/wishlist/ls/J66BD1HMFJF2?ref_=wl_share

Having a NEAR IMPOSSIBLE time getting a van purchased. I am packing, I'm near done with planning of project, but I am stuck trying to move forward with so many next steps... 

Entering Phase 2 of Fundraiser and Project- buying a Step Van and prepping for a van "conversion" or "van build" (search on youtube for more on these). But this sick it has just been too much trying to manage this fundraiser on my own. It has been a very exhausting challenge and I have not done as well as I need to so I am still accepting any help I can get! The hyper-verbosity and neurological symptoms make it hard to be effective at this campaign. So yes, I have been fundraising for a few months but I still need help! 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.

After 19 years of paying taxes, I have been denied the government aid that would allow me to at least keep me afloat while I still try to find a disability lawyer. I can't just keep waiting for it, I came up with this plan to be proactive and avoid total homelessness until I get disability (ssdi). 

ALMOST 12 MONTHS of SarsCov2 complications now. It feels unreal. It hit me hard and I nearly died multiple times from March to May with my heart stopping too many times to count. Symptoms began as fever, sore, red throat, digestive troubles, body pain, and sinus/head pain in late Feb 2020. I still get these symptoms chronically today, as do many hundreds of thousands of others (so glad I found Twitter and the FB support group! I was going insane thinking I was getting "reinfected" over and over again.) I am one of those 35% who got Coronavirus that the CDC say are simply not improving, aka #longcovid or "post covid syndrome." Many viruses can cause or further disability turns out.

Was in hospital March 2020. Xrays showed damage to lungs. D dimers, GFR, creatinine levels all high. Mast cell activation and cytokine storms cycling since. Kidneys, heart, liver,... organs and tissues are all being attacked and failing. 


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, with lessening ability to 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, let alone watching 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.

My treatment: rest and Mast Cell stabilizers (antihistamines) plus vitamins, only thanks to my loved ones helping me buy them. (Thank you!!!! <3)

Since Covid, these are like "cytokine storms" from heck. I would have never thought my pain experience from lupus, IC, endo, and my messed up back could get much worse. I was very wrong. The mast cell (#MCAS or #MCAD) and cytokine over-reactions are now widely recognized as a side effect of the coronavirus; you may have even heard of them on the news or from Fauci/CDC. 

Almost 5 years ME/CFS, almost 3 years lupus.

I got sick Feb 22nd-first fever, digestive, throat, sinus, sneezing, headache,... Got way worse in March...

Never got better.

#millionsmissing


Government resources are shockingly non-existent. I was able to get Medicaid (free state insurance-it is TERRIBLE, but I am trying!), $192/mo food stamps, and free govt cell service. No intact "support network" of friends, as very isolated by years of illness. My family is very small (more of a stump than a family tree) and many have sadly already passed. We have been estranged for most of my teenage and adult life, and they have not been there for me through my many surgeries or health issues. Still, they have let me live in their home a year now but they HAVE TO SELL asap! I just found out they need to have me out by October 31st. Major crunch to get whatever funds I can and buy an RV asap. My situation has kept my dad from retiring a year past when he was supposed to. They are elderly and both have severe health problems as well as financial issues, but despite our differences they have helped me here and there over the last couple years while I avoided total destitution and homelessness. I appreciate their sacrifice and assistance immensely, but they can no longer sustain any level of help.

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 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 can help in any way? I need a van conversion builder asap (October/Nov/etc. 2020) and a safe place to park starting Nov 1. Do you know of a builder for hire in SoCal/L.A. area? 


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 starting Nov 1st!!! I am still looking for a place to park the 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. So please help me share this gofundme link, and I also have Venmo and Amazon Shopping List links available to share. Please email me at:

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

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Organizer

Nicole Batenhorst 
Organizer
Valencia, CA