Help Ashley Heal Her Brain

Hello, I’m Ashley! I’m 34 years old, and there is something wrong with my brain.

When I was 20, I was diagnosed with a rare bacterial infection in my blood and simultaneously exposed to toxic mold in the home where I was living. For a long time, these two issues affected my body and my brain, and I evidently sustained permanent neurological damage from them. With the help of many wonderful people, I managed to recover enough to complete my education, and I’ve enjoyed some wonderful high points in my life since then—but I’ve experienced chronic pain, anxiety and depression, and intermittent insomnia ever since.

In 2018, I finally left a situation where I had been taken advantage of and gaslit for years. I started working hard to recover debts and try to heal completely with therapy and lifestyle changes.

The pandemic has been hard on everyone. Amidst the stress, I was working extremely long hours and also engaged with doctors to try and address some traumatic memories I’d been carrying, and in February of this year, 2021, I simply stopped sleeping. It was like I just broke—permanently switched on. I found myself unable to disengage from a fight-or-flight state. Intrusive music has been playing on a constant loop in my head ever since, and I’ve begun to exhibit some OCD behaviors, as remarked on by my therapist and doctors.

Because of the lack of sleep, I became unable to work and definitely unable to drive myself around. Taking care of my own meals, laundry, and hygiene has become a challenge that I am sometimes not equal to. I took a leave of absence from my job starting in May, and have received some short term disability support.

My integrated specialist, therapist, neurologist, and cardiologist all agree that the major issue tying my problems together is PTSD and that I experienced some sort of mental break. My functional health doctor dove in with brain-mapping software and was able to understand—and make me understand—that the brainwaves my mind generates are not conducive to sleep. Mold exposures over the years, and of course the trauma I’ve endured, have landed me here.

So where is here?

I don’t work right now. I am in a holding pattern with my long term disability program. I’ve doggedly documented every doctor visit, every medication I’ve tried—which is a lot—and case managers have been reviewing my information since early July to see “if I qualify.” I’ve applied for social security disability benefits and am awaiting a decision. Because this has yet to be settled, I have no income. I’ve nearly depleted my savings account and I’m trying to ensure that my new partner and I do not go deeper into debt for my care alone. I’ve officially complained to Cigna and I’ve written to my representative as well.

In the meantime, my cardiologist has diagnosed me with postural orthostatic tachycardia syndrome, or POTS, which is a disorder of the autonomic nervous system that sometimes hitches a ride with CIRS—mold illness, or chronic inflammatory response syndrome. I’ve begun conventional treatment for the POTS and am seeing a good response. I cleaned up my diet, generally abstain from caffeine, alcohol, dairy, etc., to try to make this process easier for my body. I supplement like mad, hydrate faithfully.

On the functional side of things, I am undergoing ketamine infusions, neurobiofeedback therapy, and a few medications that are not covered by insurance.

I’m relieved to report that I’ve found some relief in the past few weeks. A peaceful night here, a successful nap there. This makes me feel hopeful that I am on the right track, but I am still not quite okay. My neurologist and I did a sleep study and found that if I do manage to get to sleep, I wake up between 19-20 times per night, and I don’t usually reach the REM stage—maybe once per night on a good night. My hair is falling out, which terrifies me. I’m in pain all the time. At least for a while, I will be at home. My job will be to heal. Take walks, cut down on screen time, eat healthfully and mindfully.

I’ve begun to despair of my disability funding ever coming through, so I’ve done what so many people do and I’m asking you all for help.

On my team of fighters is my fiance Stephen, my family, many of whom have experienced their own health crises over the years, my healthcare team, my cat Fiddle, and the dear friend group I’m fortunate to have.

The amount I’ve requested for this campaign will enable me to afford medical expenses for the next four months or so. I have insurance, which is incredible, but I can’t afford to pay for it much longer with no income. I will do one more ketamine infusion, making six in total, and then we will do maintenance doses.

Neurobiofeedback will continue for quite a while. I should be able to pay off the MRI I had done of my brain—no physical issues, what a relief! I’ll be able to get all of my medications, including the out-of-pocket ones. I want to continue to see the doctors and specialists I need to see, especially a therapist who does flash EMDR.

Thank you for your support and your generosity. If you can’t give a gift, know that I have so been there—wanting to contribute but being too down on my own luck to participate. If that’s the case, please share my campaign. And if absolutely nothing else, please use my story as a wake up call. There IS such as thing pushing too hard, doing too much. Don’t stay in situations that you know are unsafe for you. Never again will I feel something in my heart and gut and body that isn’t right and force myself to keep going and endure it.

Everybody experiences trauma, physical and emotional. I can’t change what happened to me, but I can try to move forward. Will you help me?