Medical bills and home remediation expenses

My name is Lara. And I am The Girl on Fire. I have an extremely rare condition called erythromelalgia (EM)…or Man on Fire disease. It affects my face, hands, and feet. Any small amount of warmth (or stress, warm food, or spicy food) makes my face turn bright red and burn like I have my face in an open oven door. I have to keep my house constantly frigid, and stay indoors all the time, just to keep things semi-under control. I have been to doctor after doctor after doctor …all stumped by my strange symptoms. I was finally given a diagnosis after traveling to the Medical University of South Carolina. But, even though they managed to diagnose my condition, there wasn’t much help they could offer. Most doctors haven’t even HEARD of EM, much less treated a patient with it. And, truthfully, there really are no treatments for it. The only thing doctors can offer is a mile-long list of drugs (that are designed to treat other illnesses, not EM), that a patient can “try” to see if they provide some relief. Blood pressure medicines, anti-depressants, anti-seizure medicines…the list goes on and on. And there is no guarantee that you’ll ever find one that helps, no matter how many you try. Some may help a little, some may do nothing, some may land you in the hospital with horrific hallucinations (Yep. That happened). Even the hallowed halls of the Mayo Clinic hold no real answers. The same mile-long list of meds you can try…and the brilliant advice to try to “cool” yourself with ice, fans, etc. Well, I cooled myself so intensely that I almost died of hypothermia (Yep. That happened, too). The emergency room doctor said if I went home, I’d die. So…five days they kept me in the hospital to defrost me. And, while I was there, I also suffered a nightmarish withdrawal from my latest drug trial. It was so bad that I didn’t even know who I was part of the time. All the skin on my face peeled off from the cold damage it had sustained. I had a few spots of frostbite, as well. Needless to say, I don’t do any extreme cooling, now. But, I do still have to keep the house very cold and use a fan…and I am still trapped inside. It has been nearly a year and a half since I’ve been able to leave my house for anything but doctor’s appointments.

If Emily Dickinson is right, and hope is a “feathered thing” that perches in the soul…after all of this trauma, my hope had flown the coop. But, it returned in the form of a functional medicine practitioner, in Santa Fe, who struggled for years with erythromelalgia, herself. She found the root cause of her EM, went through treatment, and is now in complete remission. After some testing (both of myself and of our home), we now know that the root cause of my EM is the same…mold toxicity from our damp crawlspace. The initial relief and hope we felt at finally having some answers, was quickly supplanted by worry as we began to realized the depth and scope (and cost) of the remediation our house needs, and the treatment I will need, to give myself a chance at healing. The first thing we had to do was hire an Indoor Environmental Professional, to advise us…so we will know how to proceed with the remediation of the house in a way that will be safe for me and won’t exacerbate my condition. The first and most obvious step will be to have the mold in the basement removed and the whole area sterilized. Then, the space will have to be encapsulated (including the installation of a powerful dehumidifier), to ensure no mold problems will arise in the future. The interior of the home will also have to be thoroughly examined and have remediation work done, as well, to make absolutely certain I will not be re-exposed to any mold, even old, desiccated mold in the wall cavities or ductwork. And once all the work on the house is done, every single item and surface in the entire house has to be cleaned, in a specialized manner known as small particle cleaning, before I can even consider entering my home again. Oh, yeah. I forgot to mention that I absolutely cannot be in the home while all this work is being done. Walls have to be opened up and any old water damage has to be sanded or scrubbed to remove any trace of contamination. And all that sanding and scrubbing can aerosolize mold toxin particles. I definitely don’t want to be breathing that. Unfortunately, even with incredibly careful cleaning, many of our items will have to be discarded, as porous items that cannot be cleaned thoroughly enough could re-expose me to toxins. This includes upholstered furniture, mattresses, and rugs. So, on top of all the expenses related to my treatment, hiring specialists to make sure we do all the work safely, renting a storage unit to house everything that has to be removed from the attic and the house during this process, and repairing and remediating the house, we also have to discard (and eventually replace) a significant amount of our furniture, as well. Then, there’s my treatment. Of course, as it is considered “Functional Medicine,” nothing is covered by insurance. I’m currently taking over a dozen medications and supplements, only two of which are covered. I take 32 pills every day…and that number is about to go up, again, when I start the binder I have to take to rid my body of the mycotoxins (think: chelation therapy for heavy metals, except this is for mold toxins). After the binder, there are about eight other stages of the treatment for this disease, each with its own medication and/or supplement, which will attempt to stabilize hormones and other body functions to help the massive inflammation in my body to subside. There is no set timeframe for this healing process. It may take many months. It may take years.

As we start this arduous process, the numbers are daunting: $16,000 for the basement portion of the work and $14,000 for the mold cleaning and interior portion, $1,200 to have the attic insulated to help the air conditioner keep the house cool during the scorching summer months, $1,800 for a complete inspection of our home, $650 for the first consultation with my doctor, $450 for the first consultation with our Environmental Professional, $400+ electric bills, each month, from running our air conditioning non-stop (AND running a window unit in the bedroom to keep me from being flared up all night long), and hundreds of dollars, every month, for medicines and supplements. And those are only the new expenses. There is also the $8,000 air conditioning unit we had to have installed, to replace our ancient unit that kept giving out on us (not what you want to have happen when you have a condition that sets you on fire), and the $1,500 we had to spend to replace the refrigerator that gave up the ghost, trying to function at sub-60 degree temperatures all winter. Did you know that refrigerators aren’t meant to function in temperatures below 60 degrees? We didn’t, either. Day after day, month after month…the bills keep stacking up, with new surprises all the time. Like the new window air conditioning unit my husband has just gone out to buy, as the last one has completely burned out.

My doctor, speaking from her own agonizing experience, expressed it best: “You feel like you’ll never feel joy or wonder again.” It’s so true. This disease, as do so many others, robs you of joy. It isolates you from the world. You feel invisible..unknown and unknowable. But, I have hope, again. It has come back to roost within my soul. Its voice is tiny, but growing. If you can help, financially, thank you. Even if it’s a single dollar, thank you. If you can’t help, financially, please send prayers or good vibes, healing thoughts, and love. And, thank you. If you pass this message on, thank you. And if you can do nothing but read my words, thank you. From the bottom of my heart, thank you. I am here. I still exist. And I am not giving up. Thank you.