She has an amazing, but all too common story. I wish that all of us could get the help we need.
Agreed. Her story represents so many
Reblogged this on Lyme and a Coconut and commented:
This is an essay I relate to completely. I am too exhausted to write up my own blog entry about the latest symptoms and how neurological and psychological they are – but this author does it well. I don’t like the one curse words used, but when she talks about worrying she’s “just hyper-sensitive,” I want to cry out, “I KNOW!” When she talks about how her doctors dismissed her, I want to cry out, “I KNOW!” When she speaks of internal shaking, the vibrating, the inability to comprehend and yet producing an award-winning thesis, I want to cry out, “I KNOW!” When she becomes a puppet with strings being pulled by the psychiatric community, I cry out, too.
She writes, “Oftentimes there was nothing much to see on the outside, but on the inside I was being roasted.” – I KNOW!
I look normal on the outside. I look “fine.”
But last night I lost the ability to speak for a minute or two. Words just scattered. My “ticks” or twitches are increasing. New things are popping up and I am trying my hardest to keep track of things for my appointment on the 18th and yet not exhaust my spouse by constantly talking about it.
The entire essay is so close to home and makes my heart break open. Her last paragraph echoes much of what I feel and I will quote it here:
” We need a better perspective. And for that, we need you. We need the world to know that the way Lyme disease is defined, diagnosed, and treated is severely lacking. If you are our family member or our friend or our neighbour we need your support. We need you to know about our struggles to get diagnosed and treated. We need you to know about our suffering. At times, we may need you to hold our hand to get through the crazier and more unbearable patches of this ordeal. We may even need you to open your wallet, as insurance companies tend to side with the four-week protocol, not with the patient who needs long-term treatment, currently only offered at private clinics. If you are our doctor we need you to take us seriously. We need you to open your mind and expand your thinking beyond the current protocols. Most importantly: the crazy disease of Lyme has to go mainstream. It has to be straightened out. It will, I have no doubt, over time.”
Thank you for reading her essay. On behalf of so many chronic lyme suffererers, thank you.
I am so sorry you are suffering so greatly. I hope you are able to find legitimate help, it is so difficult.
thanks @jeanvieve7 – I can say the same for every single person who has this. My heart breaks yet is hopeful for all of us. Thank you for reading!
My Color Is Lyme
She has an amazing, but all too common story. I wish that all of us could get the help we need.
Agreed. Her story represents so many
Reblogged this on Lyme and a Coconut and commented:
This is an essay I relate to completely. I am too exhausted to write up my own blog entry about the latest symptoms and how neurological and psychological they are – but this author does it well. I don’t like the one curse words used, but when she talks about worrying she’s “just hyper-sensitive,” I want to cry out, “I KNOW!” When she talks about how her doctors dismissed her, I want to cry out, “I KNOW!” When she speaks of internal shaking, the vibrating, the inability to comprehend and yet producing an award-winning thesis, I want to cry out, “I KNOW!” When she becomes a puppet with strings being pulled by the psychiatric community, I cry out, too.
She writes, “Oftentimes there was nothing much to see on the outside, but on the inside I was being roasted.” – I KNOW!
I look normal on the outside. I look “fine.”
But last night I lost the ability to speak for a minute or two. Words just scattered. My “ticks” or twitches are increasing. New things are popping up and I am trying my hardest to keep track of things for my appointment on the 18th and yet not exhaust my spouse by constantly talking about it.
The entire essay is so close to home and makes my heart break open. Her last paragraph echoes much of what I feel and I will quote it here:
” We need a better perspective. And for that, we need you. We need the world to know that the way Lyme disease is defined, diagnosed, and treated is severely lacking. If you are our family member or our friend or our neighbour we need your support. We need you to know about our struggles to get diagnosed and treated. We need you to know about our suffering. At times, we may need you to hold our hand to get through the crazier and more unbearable patches of this ordeal. We may even need you to open your wallet, as insurance companies tend to side with the four-week protocol, not with the patient who needs long-term treatment, currently only offered at private clinics. If you are our doctor we need you to take us seriously. We need you to open your mind and expand your thinking beyond the current protocols. Most importantly: the crazy disease of Lyme has to go mainstream. It has to be straightened out. It will, I have no doubt, over time.”
Thank you for reading her essay. On behalf of so many chronic lyme suffererers, thank you.
I am so sorry you are suffering so greatly. I hope you are able to find legitimate help, it is so difficult.
thanks @jeanvieve7 – I can say the same for every single person who has this. My heart breaks yet is hopeful for all of us. Thank you for reading!