Today has been a frightening day. After three years of nonstop medications to attempt to quiet the constant roar of pain in my right ear, it has been discovered, by a simple blood test no one else has thought to do, that my liver is severely toxic. I am scheduled for more blood work, an ultrasound of my liver and an appointment with a GI specialist. I was told the only positive news was that my kidneys were not failing as well. I’ve known I need to be careful, and care for my liver, since I take so many medications and have for so long, but no one has ever told me how. I’ve known enough to refuse some truly horrible meds, and to wean myself off others, but the reality is I would not make it out of bed without the medications dulling some of the constant stabbing feeling deep in my right ear. Truthfully I did not realize the severity of my liver being so poisoned until I looked up what essential oils and medicinal herbs I can use to care for my liver, and saw in my much used reference book, the terrifying statement that a toxic liver can lead to death. I feel so many emotions now- mostly fear, but also so much anger, at the neurosurgeon who completely screwed up my brain surgery last year, then looked me in the eye and told me I would hurt, very badly for the rest of my life. His suggestions were to ingest large amounts of opiates or get a medical marijuana card- something I am not keen to do for too many reasons to list here. And so, now a year after the failed brain surgery, the most unlikely person to care about my well-being- a doctor who physically pulled on my bad ear and asked, “Does this hurt?” (Yes, it does! So much pain! Don’t punch the doctor, I think.) She sends me to get the lab work, a simple action any number of my other specialists could and should have done. I am very scared, The neuralgia pain has already so badly affected my life and my family’s life, I dare not allow myself to think how sick one can become with a toxic liver, because I am much to good at imagining worst case scenarios, that too often become true, which in turn cause many panic attacks and more pain. It’s a seemingly endless loop of pain, medications that dull the pain just barely, but enough that I still attempt to get out of bed, work a freelance job for a dollar an hour, simply because I can make my own hours, and my boss is kind, and attempt to cook sometimes, something I used to love to do all the time. I already felt broken before getting the news about my toxic liver this morning. Now my body, my life, my future feels very fragile and tattered.
If you have not heard, my husband and I are running a fundraiser to pay for the plane tickets to get us to Pittsburgh- where the only team of neurosurgeons for my specific rare nerve disorder- Geniculate Neuralgia, study and successfully perform brain surgeries to reduce the constant pain caused by this disorder- put simply a rogue nerve bouncing against other nerves and blood vessels, creating havoc deep in my ear and on the surface of my brain. The donations will help pay for my husband’s 5-day hotel stay- the length of time it will take to undergo this surgery, and recover enough- i.e. be able to walk with the aid of a walker, so that we can fly back home where I will recover, optimistically within a year. Your donations also help us get through the days until we take the trip for my second brain surgery. Both my husband and I are disabled, and his pain from an Army injury made worse after being in a car accident several years ago, now mean that he is waiting for me to be healed so that he can undergo spinal surgery to stop the horrible chronic pain he is in every day now. Thank you for reading my blog, and if you do, read more about our fundraiser. It’s embarrassing to ask friends and strangers for help, but now that both my husband and I are in constant pain we simply cannot make enough on our own, bu that doesn’t stop us from trying! The support and kindness we receive has been a balm and a blessing. Thank you to all who help us- in your words, advice, donations and love.
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