Help Porochista fight Lyme disease

Dear all,

The situation continues to be dire. The help that has come in has been tremendously generous, and we are blown away by your compassion. There continue to be obstacles and challenges, but we are all so hopeful for 2019.

We have increased the funding goal as Porochista continues to need funds for ongoing medical treatments, travel, caregiving assistance, and so many other things associated with trying to heal and get through this. Thank you all so much, who have been so generous already, and for continuing to share this link. Porochista would not have made it this far without each and every one of you.

A recent update on what is going on: Porochista is currently in Santa Fe, NM, where she has been since the last week of August —after several seasons of fleeing toxic mold in both her parents’ house in LA and her Harlem apt (she lost all of her possessions, all of it to a roof collapse that covered everything she owned in lead, mold, asbestos, etc. In August she was bedridden in her parents’ house and then was able to travel to Santa Fe to her old medical team, but she has had a lot of trouble finding a single permanent place to live. There were also challenges with a previous caretaker (see the previous update).

On January 15, two days before her birthday, Porochista will not have a home again. She has had to move 14 times this past year. She is trying to explore options in NYC, where her heart still, where there are doctors that understand Lyme, and community. She also slowly applying to jobs in 2019 related to teaching, journalism, media.

Following Porochista on Twitter continues to be the best way to get updates on what is happening: https://twitter.com/PKhakpour

Also Instagram: https://www.instagram.com/pchza/

If you have any leads, feel free to DM Porochista directly on Twitter.

Thank you,
Janice

Dear friends,

Some urgent and bad news from Porochista. A summary: her previous caretaker stole thousands from the crowdfund and can not be reached. She has been left without any assistance during this critical stage. At the present moment, she is currently crashing with friends and about to begin new treatment. She needs help finding a reliable caretaker and access to funds to continue being able to pay for assistants, living costs, and medical treatment. Here is the update, pieced together from P's most recent Twitter updates, in her own words:

Tweets from Oct 7:
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So my season of crisis continues & now i am in even more danger. Very scared. Here is a cautionary tale about caretakers & the instability of (not all, yes, but) white people right now:
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Nearly a month and a half ago i put another call out for a paid position. Someone who could drive me out from LA to Santa Fe where my medical team has always been and help me stabilize after a month of being bedridden in LA in my parents ‘sick building.’ Someone from the East Coast volunteered. She’d DMed me for years, a fan of my work, a younger woman who said she’d had experience and was in between jobs and wanted to do this out of love.
/I insisted on a salary that came out of desperate crowdfunding, that i checked with many as more than fair & i paid for her plane over & every meal including other person items. Anyway she very reluctantly agreed to take money and her chores were basically cooking meals and driving me to doctors appointments. I can no longer drive due to cognitive issues. She also did laundry. She claimed the whole time she’d never been in such a nice city, never at so well. My practitioners gave her free treatments. I often became her therapist because she (like so many of us) suffered from mental health issues and i didn’t mind. I was grateful for the assistance & company. I can’t even open a jar on my door. I can barely open a door. I need someone to be here when i take a shower as i have often had terrible falls. Soon the passive aggression began. Then secrecy—disappearing for hours at a time (i later found out it was often to smoke, which she claimed she’d quit but obviously if you are a caretaker of someone w/ biotoxin illness you can’t be a smoker!) She started trying to get me to not trust doctors, healers, friends. We stayed for nearly a month with my hoshin sensei (who had healed me with her bees for years) and she was so rude to her. They often had fights. This woman is 84. Still i saw her like a student and encouraged her. She considered being here long term and i considered having her as a roommate though i told her eventually i would be better & she would need to get another job because i could not afford to pay her as much as i was. One night when i was in the worst pain, she tried to comfort me by undressing and getting into bed with me to tell me she loved me. That was how she showed affection. I was horrified. I asked her to stop and she and she did and she apologized later. Still we kept going because this is how severe illness works. I was too ill to find a replacement or even question her. I had handed over my credit cards because i could no longer walk into a grocery store without being ill.
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I trusted her. Because i had to. But also because i wanted to like her. I often did. She was in many ways “good” to me while ever person i know who met her complained about her darkness & worried how to support her mentally so she could help me. We all had to spend so much energy validating her every day, reminding her that she was appreciated and loved. Meanwhile i was working on intense treatments so body going through so much. My inflammation markers were through the roof but some progress i felt was being made.
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Long story long: i signed a lease on a huge two bedroom casita i thought would be of comfort to us both. (There is actually some chance it is a “sick building” too). She was elated & loved the place & dreamed of living here long term. Still i was paying her rent & paying her caretaker salary & buying all food and was going to buy her the bed of her choice. Even as her negativity & all sorts of other red flags were an issue (her constant boasting of dating only black women while villainizing a recent black ex). Yesterday morning she seemed ill and i was trying out to figure out ways to take care of her but she needed to be alone. I was absently checking my bank account and realized there were all these charges i did not approve. Including a plane ticket & travel insurance. I called her & she said, yeah, she could not do this anymore. That was that. She literally stole money from me to quit her job after cashing her check for the rest of Oct. She also lied and she said my friend here thought it was a good idea too. Which was a huge lie. Also, why is calling my friends?! So many boundaries violated & now an actual crime. No one knows how to reach her. She’s blocked me on all sites (literally after just days ago talking of how much i inspired her etc on here). My friends and family are livid. Several have advised me to call the police. But of course she knows that is not my style. And now i am stuck, disabled & alone & very ill in a big house in a semi-rural part of Santa Fe all alone. With a rental car i can’t drive. With no access to food. With few friends in town who understand illness & can help. And some are too ill to help.
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For the past week i’ve had acute tachycardia and can’t breathe. Treatments in Seattle (which she went with me) were rough. I am scared i am going to die here alone.
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I am again putting out a call for a caretaker. This time i will have to do a proper background check.
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I had just bought a nice bed here & tried to create a sanctuary for healing. But i may have to go back to LA—where i always get sicker. Where my parents are barely around & whose condo is still toxic since they found & somewhat remediated mold. But i don’t even know if i can fly
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If i stay here i need a live-in caretaker for at least a few more weeks.
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Please if you know me or are a friend of a friend please contact me here. DM is good. You can’t go through this kind of brutal lyme/mold/biotoxin/mcas/fibro treatment alone.
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I will pay for your flight to NM & food & all else. Please. I desperately want a chance to be alive.
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I have had two other caretakers in the past few months & they were wonderful but had other jobs they had to return to. Nothing like this has ever happened to me. I am in shock.
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You don’t need to be a professional. My meals are basic—-smoothies, soups, mainly vegetables & some meat. You just need to drive & be around me. You just need to be kind & patient & positive as much as possible & not shady. No smokers.
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I would like to be near my NM doc but living alone without care while doing intense treatment is too dangerous.
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Porochista is desperately trying to stay alive. Please keep following her on Twitter (@PKhakpour) for more timely updates, and please keep sharing this link. Every little bit helps, and it is all so incredibly appreciated.

If you want to reach her directly, please DM her on Twitter.

Thank you all so, so much.

Dear friends,
Here is a video update from Porochista Khakpour on her current situation. What started as a simple Lyme flare-up has turned into a pretty serious collapse of her health. She has lost her home in Harlem and all of her possessions. She is currently in New Mexico with her old medical team and is struggling to find mold-free housing. She will also be going to a specialist in Seattle this week. It has been a struggle to keep going emotionally and physically, and all of the medical care, assistance, traveling, and everything has been incredibly costly. Please share the video, this page, and give if you can. Again, we are so thankful for all of your generosity so far. Porochista still has a long road ahead of her, and everyone's support means a tremendous amount. Thank you,
Janice & Esme