So wonderful to see this article in SELF Magazine! Great overview of Lyme Disease. They covered the problems of diagnosing Lyme Disease, of getting significant amounts of antibiotics, lack of doctors with knowledge on Lyme, what Chronic Lyme is, co-infections like Babesiosis, and problems in recovery.
They told the story of one woman, Durham and shared her oh so common story,
"Durham has improved, though not recovered. She is on a medical leave of absence; unable to afford her Manhattan apartment, she moved in with her mother. She still fatigues easily, and her eyesight and attention are affected. "What makes me mad is I knew something was wrong back in 2006, and no one looked at it," she says. "I want people to know they should listen to their body and not give up. They are not alone if they are going through this." SELF
I could relate to this because over 15 years ago, I knew something was wrong with me but wasn't diagnosed with Lyme Disease, and the many co-infections, until about a year ago. The only reason I was properly diagnosed is because I finally got tired of having 5 doctors treating all my different medical problems to no avail. Oh and I also decided I AM NOT CRAZY and began tirelessly seeking new answers through different doctors.
It was impressive that the article also shared the dark secret of Lyme: It can be fatal.
"Although babesiosis is less common than Lyme, you can argue that it creates as big a health burden, because of its severity and fatality rates," says Peter J. Krause, M.D., senior research scientist at the Yale School of Public Health in New Haven, Connecticut. "There are more cases than we previously thought, and babesiosis is also the number-one reported cause of infections through blood transfusions in the United States." But because medical awareness has not kept up, patients have been overlooked, undertreated and taken by surprise when their enjoyment of the outdoors—a hike, a run, a round of golf, their own backyard—turns into a life-altering threat." SELF
I am still comming to terms with how sobering this disease really is. It is hard to embrace how truly sick I am. I am eternally grateful for my doctor who spends over an hour a month with me going over various things. My doctor will spend time to make sure I understand the foreign language of my labs. After my doctor has spent time interpreting them, I am always told to walk away with this, "Chrissy, you are so sick. Your body is so fragile." Initially I always HATE hearing that. After I have allowed myself to vent a bit and get pissed off I am able to take a deep breath and relax into it. I realize it is soothing that my doctor knows how awful I feel. There is so much hope in hearing the severity of my sickness because it means this is not normal. I will not always have to deal with great pain & have such difficulty doing simple daily tasks. I can and I will feel better than this someday. I can dream of more. I can succeed in so much more.
"As tiny ticks proliferate across the country, they are spreading diseases you and your doctor probably haven't heard of." SELF
That is why advocacy is so important. Spread your story or my story of Lyme.
http://www.self.com/health/2011/03/rare-diseases-spread-by-ticks?currentPage=1
They told the story of one woman, Durham and shared her oh so common story,
"Durham has improved, though not recovered. She is on a medical leave of absence; unable to afford her Manhattan apartment, she moved in with her mother. She still fatigues easily, and her eyesight and attention are affected. "What makes me mad is I knew something was wrong back in 2006, and no one looked at it," she says. "I want people to know they should listen to their body and not give up. They are not alone if they are going through this." SELF
I could relate to this because over 15 years ago, I knew something was wrong with me but wasn't diagnosed with Lyme Disease, and the many co-infections, until about a year ago. The only reason I was properly diagnosed is because I finally got tired of having 5 doctors treating all my different medical problems to no avail. Oh and I also decided I AM NOT CRAZY and began tirelessly seeking new answers through different doctors.
It was impressive that the article also shared the dark secret of Lyme: It can be fatal.
"Although babesiosis is less common than Lyme, you can argue that it creates as big a health burden, because of its severity and fatality rates," says Peter J. Krause, M.D., senior research scientist at the Yale School of Public Health in New Haven, Connecticut. "There are more cases than we previously thought, and babesiosis is also the number-one reported cause of infections through blood transfusions in the United States." But because medical awareness has not kept up, patients have been overlooked, undertreated and taken by surprise when their enjoyment of the outdoors—a hike, a run, a round of golf, their own backyard—turns into a life-altering threat." SELF
I am still comming to terms with how sobering this disease really is. It is hard to embrace how truly sick I am. I am eternally grateful for my doctor who spends over an hour a month with me going over various things. My doctor will spend time to make sure I understand the foreign language of my labs. After my doctor has spent time interpreting them, I am always told to walk away with this, "Chrissy, you are so sick. Your body is so fragile." Initially I always HATE hearing that. After I have allowed myself to vent a bit and get pissed off I am able to take a deep breath and relax into it. I realize it is soothing that my doctor knows how awful I feel. There is so much hope in hearing the severity of my sickness because it means this is not normal. I will not always have to deal with great pain & have such difficulty doing simple daily tasks. I can and I will feel better than this someday. I can dream of more. I can succeed in so much more.
"As tiny ticks proliferate across the country, they are spreading diseases you and your doctor probably haven't heard of." SELF
That is why advocacy is so important. Spread your story or my story of Lyme.
http://www.self.com/health/2011/03/rare-diseases-spread-by-ticks?currentPage=1
Love your closing words "I realize it is soothing..." all the way through "I can succeed in so much more."
ReplyDeleteI came across something in the article I'm surprised is talked about so little it seems: Lyme prevention. After watching "Under Our Skin" I was left wondering if we no one should hike in the summer. Sure, do tick checks but how could a ranger possibly avoid Lyme given the exposure year after year? So I was glad to read in this article the closing comment about spraying with deet. How is this not more talked about? Is it controversial or unknown on how to prevent Lyme?
Hello - I am durham in the article - I am glad you liked it, but sorry you suffered with trying to get a diagnosis. These diseases are so frustrating and i completely relate to you when it comes to accepting how fragile one becomes when hit by multiple infections like this.
ReplyDeleteI hope you continue to feel better and stronger every day and wish you all the best! BD - aka Lyme Girl
Thank YOU so much for your comment! Looking forward to getting to know you more while we are both on this crazy healing path!
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