This is Carla. She is a kind, loving, gentle soul that has been bravely battling for her life against a complex list of illnesses for many years. It’s a battle that began 18 years ago in 2000 with a rash and swollen lymph nodes, but that eventually led to a very abrupt and traumatic course of events years later in 2011.
Before the worst of sickness hit, though, Carla was living her life. She was active, loving the simple gifts of being outside in nature, spending time with her husband, Jyro, and helping others heal through her work as a massage therapist. Learning about healing and seeing others recover brought her so much joy.
But after managing various symptoms for nearly 10 years after the original rash and swollen lymph nodes, Carla grew very ill in 2010 with what they now believe was walking pneumonia. She’d never felt that sick before in her life. It took her months to recover. She managed for another two years, all while actively seeking answers from doctors, but her health was regularly interfering with her ability to work everyday.
The end of 2011 is when things fell apart. It was her own personal "2012 end of the world countdown". While everyone else was talking about the Mayan calendar or some kind of apocalypse-world ending event in 2012, her own body seemed to be sputtering to an end.
They finally found a doctor who promised to find out what was wrong with her, and to never give up on her.
This Doctor spent six months ruling out every possible thing, until she was finally diagnosed with late stage Lyme Disease. No other doctor had thought to test her for this. She was so thankful to finally get the right diagnoses. She tested CDC positive for Lyme, and treatment began. Hopes were high that relief was just around the corner. But little did they know this was only the beginning.
Meanwhile Carla had to stop working completely and face the end of her life as she knew it. She became disabled, unable to work at all - bed bound or housebound most of the time. As the countdown on New Year's Eve began and they watched fireworks and festivities on TV, she experienced her first seizure.
Jyro laments that nothing is like seeing your loved one suffer so, and not be able to help: “I have seen her have multiple seizures, at times back-to-back. Her hands clenched in painful fists. I have seen her be unable to move, stand, or even speak at all. I've seen her have bad falls and turn blue. But it's what I can't see - what you can't see, that is worse than all of that for her. Most of her symptoms are invisible to us - the brain inflammation, the insomnia resulting in severe sleep deprivation, the pain that can be severe but is always present, the light, sound and other sensitivities that prevent her from engaging in the world, the speech and language processing challenges, and the debilitating fatigue.”
Carla and Jyro had high hopes she would be well by this time, now so many years into treatment. They've invested everything they have to get her into remission. But the delay in diagnoses allowed the infections to move into later stages, which makes this much harder to treat. While they’ve been told there is no cure for this later stage, they are holding onto hope for remission.
As she has continued treatment more infections have been found, which revealed that she is immune compromised. With infections in her brain, nervous system, heart and G.I. tract - the stakes are higher and the treatment more complex.
Carla has been fighting for her life for many years now, as these infections can be deadly. We need to rally around her now and buy her more time to fight and get into remission. She has expert medical care at her disposal, if only she can keep affording treatment. Some treatment is covered by insurance but much of it is not.
The toll that this takes on both the one suffering illness and the loved one supporting them is unbelievably great. Jyro has been the sole breadwinner for their family, carrying the load of working long hours to cover medical costs and living expenses, all while witnessing the depths of his bride’s fight for her life. It is a heavy load for anyone to bear, let alone to bear it on one’s own.
Which is why this is our opportunity as their community to come around them with more than well wishes, but with the kind of action and heart that can make a significant difference in both Carla’s health and their lives.
Our donations will support her medical care, including some costly upcoming treatments her doctor believes she urgently needs. This would involve Carla visiting her doctor’s clinic for several weeks to undergo a variety of treatments. Some treatments including chemotherapy targeted at mast cell (immune system) stability. And some treatments including intravenous protocols targeted at reducing the inflammation in her brain.
Please help Carla get into remission, and return to the healing work that is her calling.
From Jyro: “I want to spread awareness so that friends, family, employers, coworkers, and health care professionals can better understand this chronic illness. My hope is that an increase in awareness will help people get an early diagnosis, quicker more effective treatment, reduce misunderstandings, and improve support systems for those with chronic illness.”