Help Kiki Kick Chronic Lyme Disease

I never thought I'd ever be doing this. Setting up a GoFundMe page? Over my dead body, yeah…but If I'm writing this, it’s because I no longer have the strength I used to. The strength and energy to mask and conceal my pain and suffering which has endured far too long. Those of you who know me, know me as Kiki, the one who always shows up for you, for the community. Kiki, the life of the party. Spreading the good vibes, rainbows, and positive energy. Bringing all the smiles and laughter with my infectious energy. A 300mph Moto monkey whose love for others knows no bounds. What you may not know is that I’ve been dealing with a debilitating invisible illness for over half my life. I’ve been battling what’s now Advanced Fibromyalgia for over 18 years and Chronic Lyme Disease since 2017. I was more or less able to manage the Fibro all these years but ever since 2018 I noticed myself degenerating even quicker, only to find out too late that it was Lyme. Lyme Disease is a bacterial infection. Most often transmitted from the bite of an infected tick. If left untreated, the infection can spread to your joints, nervous system, brain and heart, and you can be left with lasting consequences. I’ve had a specialist tell me “it’s a shame you don’t have Cancer, at least we have a treatment protocol for THAT." Yup. It’s that’s bad.

When I tell people what I suffer from, most think it's just some pain and fatigue; being tired all the time. This disease affects everyone differently, but due to my underlying autoimmune condition it’s further exacerbated. It feels like living with a body and brain that constantly betrays you. My vessel is always under attack or being hijacked. I’ll wake up one day with no vision. On most days intense joint, muscle and nerve pain throughout my entire body makes me want to chop my limbs off. Neurological dysfunction makes simple tasks like holding a fork and knife, lifting a shopping bag, or twisting a door-knob painstakingly unbearable. Any small injury results in months of recovery time. I constantly suffer from brain fog with lapses in memory, hallucinations and blackouts. This disease has caused me to live with crippling anxiety and depression, my amygdala constantly in fight or flight. With my nervous system always on high alert, I’m never able to get any restorative sleep. Having fits of rage or not knowing how I got somewhere. I’ve lost 90% of my autonomy and become fully dependent because I can’t ride anymore or operate a motor vehicle. Every morning I wake up not knowing if I can move that day. I’m ashamed to admit there have been many times in my moments of weakness I’ve even tried taking my own life. I feel lost.

For years my coping mechanism has been ignoring the fact that I’m really sick. Grin and bear it. If you pretend it isn’t real it might just go away. By gaslighting myself and telling myself it’s all in my head, it might not continue to debilitate me. I spent over half my life not knowing what was wrong with me. Which caused strain on friendships and relationships, created distrust, frustrations, and made me lose the people I loved. That was what made me want to shut up about this forever.

I regret I didn’t share my story sooner. My ego only wanted to show the world the Hunky Dory side. Fake it till y’a make it baby! has been my mantra and kept me going, wearing a mask of my old self so the reality of my illnesses wouldn’t catch up to me. My best friend passed away 2 years ago and I hated that she never really told anyone what she was going through, she associated vulnerability to weakness. She decided to tough it out till her last breath and she’s gone forever now. Even as I write this I’m terrified of what will happen. What will people say? What will they think? I don’t want you to know that I can’t walk without assistance 80% of the week. That I have a full time caregiver. I don’t want you to see me cry in pain or have a shit fit because I can’t put two sentences together or can’t use my hands.

I am here today because of all of the dismissiveness I've encountered despite my undeniable and relentless efforts. All of the doctors, the friends, the family, said stuff like “come on Kiki it can’t be that bad….Stop exaggerating” “It’s all in your head” “but you look fine/great.” If I got a dollar for every time someone said this to me I wouldn’t need to make this bloody GoFundMe now would I?

In 2019 my symptoms took a nosedive. I had to downgrade from my full time job to part time and eventually no job. I thought I hit rock bottom when I moved from Oregon to California in October 2019. The day after I moved my entire body, organs began to fail one by one and I was admitted to Cedars-Sinai for a week. Where they dissipated my blood clot and ran all the tests under the sun moon and stars, only to discharge me with a bad throat and a fat bill. Fast forward 3 years and dozens of doctors, nutritionists, naturopaths, shamans and third and forth opinions later…..I’ve lost years of my life, only to find myself worse.

I’ve come to a point that there’s no light at the end of the tunnel. Every week I have 7 different therapies to keep me out of a wheelchair, and despite all of this I’m still hopeful, I shall keep on fighting. But realistically, this is my last resort. I’m giving myself one year to try these last two options before I have to consider the reality of not being able to live here anymore. I would be forced to move back to Pakistan or France where I’d receive welfare or disability. It would mean leaving behind everything I’ve built and worked so hard for here. I don’t want that.

I have finally found a Lyme literate doctor from the Holtorf Medical Group whom I trust and am confident that my Chronic Lyme Disease can go into remission despite it being “incurable”. I have faith in God and that the treatment plan, however expensive and intensive it is, will help me heal and recover. Sadly we are many suffering from this disease. I hope to be an advocate for Chronic Lyme disease: to educate, spread awareness, and ensure that the medical community takes it more seriously as it continues to spread on a global level.

$55,000 may seem like a huge sum but no insurance company in the world covers Chronic Lyme treatment. Medical bills, out of pocket doctor visits, blood work, alternative medicine, healers, cleanses, living expenses, and the fact I am unable to have consistent work because of my health, adds up to a terrifying financial burden.

This fund will help cover:

I came to LA with big dreams but I had to put my entire life on hold. I’ve had to give up all of the things I love. Unable to ride. Unable to shoot. Unable to be that highly independent free spirited Go-Go-Go Kiki. Now I just dream of going through an entire day without having to ask anyone for help for BASIC things and find myself fantasizing about being able to use a pen or paintbrush without any pain or difficulty. I want to believe these treatments could give me a chance to get back my quality of life and regain a piece of the old me.

To all my family and friends who have been there for me during this health crisis, thank you. Your support and love continues to fuel me during this ordeal and brings me closer to healing. I know life’s really testing ALL of us right now, but If you are able to donate, your generosity will be giving me a second lease on life. If you cannot, then please share this link, it doesn’t cost a dime and it will be more than appreciated. If anything I hope my story may inspire other people who are fighting silent battles to come forth with their truth. Thank you for receiving the truth I have so hesitatingly shared.