Help Porochista fight Lyme disease
AN UPDATE (Jan 2019): More details in the Updates section, so please check there for the latest on what is happening, but 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 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 again.
Porochista Khakpour is an author, teacher, advocate, friend, and, in no uncertain terms, a survivor. Porochista was diagnosed with late stage Lyme Disease in 2011, but it is unclear when she originally contracted the disease. Doctors have pinpointed the range 2006-2009, though some doctors believe she's been afflicted since childhood. For the last decade she's been in and out of hospitals, receiving new treatments and -- since no test can show if late stage Lyme has been fully cured -- living in fear of the next relapse. Porochista's forthcoming memoir SICK examines the frequent hospitalizations, her battles with depression and overcoming addiction, and the emotional and financial tolls of a life lived in the shadow of illness, betrayed by her own body and uncertain of her future. But Porochista's story isn't just her own, it's also a call to action for the medical community and a validation for the hundreds of thousands of people suffering from Lyme disease in silence. Roughly 30,000 new cases of Lyme are reported to the CDC every year, but they estimate that more than 10 times that many go unreported. As a result, research for the disease is underfunded, doctors are ill-equipped to diagnose its symptoms and treat its many complications, and people afflicted with the disease are often left without proper care, feeling confused and alone. Experts put the average cost of late-stage Lyme as somewhere around $20,000 to 200,000, and the annual cost of Lyme disease in the United States is over $1-3 billion as of 2017.
We're reaching out to you, friends and strangers alike, because Porochista's own fight with Lyme is not over -- her illness returned with a vengeance this winter while she was teaching in New England, and to complicate matters she returned to New York to find that her apartment had been filled with lead and asbestos dust from neighboring demolitions. She has been left essentially homeless, relying on her friends for hospitality as her disease continues to worsen. (As of May 10, Porochista has just received test results that indicate very high inflammation markers in her body as a result of Lyme and mold.) On top of that, SICK is released in June; Porochista is a true believer in the power of telling your story in person and has worked tirelessly over the last year to set up a tour to correspond with the book's publication, but with her Lyme relapse the financial cost of a book tour (and the Lyme-related travel precautions) is well beyond what she can afford on her own. Our spirited, independent friend is dragged down by her symptoms, drowning in medical bills, and left without the time or money to properly search for a new home. She's currently in San Francisco seeing yet another doctor, relying on another friend, and receiving treatment that insurance won't cover. So please, every dollar you can give will help towards Porochista's treatments and expenses as she continues to battle Lyme, raise awareness, and hopefully help usher in a brighter future for the next generation afflicted by this disease.
Thank you, you generous, lovely people,
- Janice & friends of Porochista
"The past 18 months of my life have been a nightmare after some serious toxin exposures that left me with the worse lyme relapse of my life and all sorts of terrifying other diagnoses. Every week they seem to worry it is all morphing to a new cancer, another autoimmune disease, some degenerating condition, and yet I am still hanging in there. I have trouble swallowing still, I am very thin, I have movement probs, heart issues, the works. I have very abnormal markers. My diagnoses just this year are CIRS, EDS, MCAS, POTS, Osteopenia, and of course Lyme (apparently some new West Coast strains I picked up at some point in NorCal most likely). It has been confirmed those toxin exposures got me to this point and my bad genetics are why I can't get well---that and the fact that I have had no stable home.
But as many of you know my hometown LA is not good for me and I continue to only get sicker here.
I have lived in 30something spaces now in 18 months. This is no way to heal every doc says. I spent 5 month in Santa Fe trying hard to heal as I did before but the break in their drought meant I was in constant moldy spaces and it only made me sicker--plus high altitude made my oxygen levels very unstable so I was ordered to leave. I had friends drive me out to NorCal and when I could not find a home there, I had to go back to LA.
I am now living on the floor of a couple's apt in Koreatown with no belongings.
I need a real home desperately to stabilize. I really may die and I desperately do not want to. I have become skeletal and fighting hard to stay alive. NYC has a lot of the resources I need and because I can't drive I can get around more easily. But the healthcare here is really failing me and no one is around to help. I fight every day to not let depression take over but it is really hard.
My family is getting poisoned themselves in their space. My mom tries her hardest but it is hard for her to do more for me. She delivers me soups and things every few days.
I do not want to live alone. Renting a space in a safe home (mold-free, preferably carpet & toxin free) is my ideal. I thrive that way. So one option is a room.
Another option is possible finding a three bedroom and splitting it with some disabled friends. (The prob is every time I gather these people they become too sick to move. So it is unclear.) But they may be in, if you know of spaces.
I have no income at the moment and desperately want to get well to work again. My brain is back even if my body is not.
My crowdfund is all I have and it is dwindling. I am trying to save every penny for NYC though LA has become weirdly just as expensive (and full of dead ends! I tried to move to NorCal and it was much of the same).
If you want to donate there is still this and it would help me a lot.
But if you could find me/offer me a place to crash (I will pay something!) it would mean the world to me. I would just need a few weeks. Everyone I reach out to says they have mold in their space, but I can supply an ERMI mold test. I do have some contacts in NYC who are looking out for me on that end.
Sorry to sound so pathetic. I have book deadlines I have missed but expect to hit, so much to look forward to but I just need some weeks of stable treatment to get back to stability. After mold exposure in Jan 2018 at my parents, compounded by the roof caving in in my Harlem apt and destroying my whole space (mold lead asbestos the works), most docs know with my genes I am lucky to be alive. I am no longer constantly in ER so that is something but I am in a lot of pain and feel far better in NYC.(I am also considering Massachusetts for MassHealth).
If you have other areas in CA that you might suggest or any ideas at all, do suggest them! I am at a point of needing any and all advice. This a true emergency and I am desperate to get out of crisis at this point."
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.
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:
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:
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.
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.
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.
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.
I am again putting out a call for a caretaker. This time i will have to do a proper background check.
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
If i stay here i need a live-in caretaker for at least a few more weeks.
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.
I will pay for your flight to NM & food & all else. Please. I desperately want a chance to be alive.
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.
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.
I would like to be near my NM doc but living alone without care while doing intense treatment is too dangerous.
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.
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