Sunday, June 8, 2014
A Twist of Lyme: Battling a Disease that "Doesn't Exist": Throwback - Blue Skies
A Twist of Lyme: Battling a Disease that "Doesn't Exist": Throwback - Blue Skies: Things are so much better now, and almost a year has past since I wrote this, but it means so much to me still, if perhaps in a very differe...
Saturday, June 7, 2014
Throwback - Blue Skies
Things are so much better now, and almost a year has past since I wrote this, but it means so much to me still, if perhaps in a very different way, that I wanted to share it again. I am still waiting for my true blue sky - my full remission, but this poem I wrote in September of last year reminds me that I can find many different kinds of blue skies along the way. So for all of you out there who are awaiting your blue skies, remember that after blue skies come overcast, or dark clouds, sometimes storms, then blue skies again, and such is our treatment. And so is treatment...
He promised me that there would be blue skies
That if I listened and did as he said, that they would come to me
Blue Skies
He promised me that there would be blue skies
That if I listened and did as he said, that they would come to me
Better days, happier times, I supposed
I spent months looking up at the sky, never to see any blue
I would stare for hours and hours
Watching the birds fly, first north for the summer
Then south for the winter
Only to return again
I examined each cloud to see if my blue sky might be hiding behind it
Never to be seen, never to be found
I counted the stars, again and again, losing count and starting over
Maybe he meant my blue sky would be found on a dark one on a clear night
I watched each moon as it progressed from a crescent to a full moon
I stared at the sun, wondering if its glare might lead the way
Every raindrop could hold the key to my blue skies, once that final drop hit the ground
I searched and pleaded with whoever was listening in my silent room to find my blue skies.
But no one ever responded
My blue skies, never to be found, I thought
The sky - blue in the air, but never in my heart
I questioned him, quite angrily at his failed promise
That my blue skies he had taunted me with for me months were nowhere to be seen
I felt deceived by the one man who was saving my life
He begged of me to be patient, to stay on course
And so I looked at the North Star and pondered what a blue sky could really be
I waited patiently and stopped searching
And by doing so, I found those skies
Or better yet, they found me
And I caught the blue skies, with my eyes, my arms, my lips
Vowing never to let them go
My heart sang for the first time in many years
And I felt alive under those clear blue skies
And I vowed to never forget the special feeling of something so longed for
Finally found.
My blue skies didn’t fix everything
Nor would I be able to stare up at them for long
But I have never forgotten the feeling, as I vowed
And I find myself again each day looking out the window
Staring at the sky, hoping they will return
Vowing to never forget that feeling
My blue skies.
I spent months looking up at the sky, never to see any blue
I would stare for hours and hours
Watching the birds fly, first north for the summer
Then south for the winter
Only to return again
I examined each cloud to see if my blue sky might be hiding behind it
Never to be seen, never to be found
I counted the stars, again and again, losing count and starting over
Maybe he meant my blue sky would be found on a dark one on a clear night
I watched each moon as it progressed from a crescent to a full moon
I stared at the sun, wondering if its glare might lead the way
Every raindrop could hold the key to my blue skies, once that final drop hit the ground
I searched and pleaded with whoever was listening in my silent room to find my blue skies.
But no one ever responded
My blue skies, never to be found, I thought
The sky - blue in the air, but never in my heart
I questioned him, quite angrily at his failed promise
That my blue skies he had taunted me with for me months were nowhere to be seen
I felt deceived by the one man who was saving my life
He begged of me to be patient, to stay on course
And so I looked at the North Star and pondered what a blue sky could really be
I waited patiently and stopped searching
And by doing so, I found those skies
Or better yet, they found me
And I caught the blue skies, with my eyes, my arms, my lips
Vowing never to let them go
My heart sang for the first time in many years
And I felt alive under those clear blue skies
And I vowed to never forget the special feeling of something so longed for
Finally found.
My blue skies didn’t fix everything
Nor would I be able to stare up at them for long
But I have never forgotten the feeling, as I vowed
And I find myself again each day looking out the window
Staring at the sky, hoping they will return
Vowing to never forget that feeling
My blue skies.
Sunday, June 1, 2014
Delinquent with the Best of Intentions
And so it goes. Another month has passed and I have let you down. Once upon a time, I was so committed to writing my blog that I received letters of thanks for sharing my daily experiences and innermost feelings. And things have changed. But it's important that you, as my readers and friends understand that the less frequency with which I write is a sign that treatment does indeed result in progress, that life does begin to improve, and that writing daily entries no longer becomes necessary.
What is important for me to convey to you is that I have not abandoned you. In fact, you are more important to me than ever. I have spent the past several months doing 70+ interviews with local and national radio stations, newspapers, magazines, and television appearances. I do this because I have realized that my book has made some noise. It's rocked the boat and as you have gathered by now, I am not one to sit quietly and allow a collective group off arrogance and greed who have derailed my life get away with it as they do the same to you. And I sure as hell will never allow this to happen to my child. And so while you may not have heard from me on the blog, please do click "HOME" above and take a look at a taste of what I have been up to in the media. Of course I cannot put everything up, but we are keeping up as best we can.
They say that when in crisis one goes into fight or flight mode. Suffice to say I am in full on FIGHT mode. That said, I have consciously taken on this task with a graceful tone, attempting to bring this scientific and medical tug of war back down to a human level. My goal has been not only to help educate the public about the reality of Lyme Borreliosis Complex, but to perhaps grab the ear of an allopathic doctor who might need to eat a piece of humble pie and be reminded that all of us are human. When patients come to their doctors in pain, be it physical, emotional, or mental, it is their responsibility to and privilege to treat that patient, not an entitlement. It is my hope that someone out there might hear my story and reflect on some puzzling patients and perhaps want to learn some more about which I speak and at the very least, treat us like we are humans with hearts, often broken by having been beaten down.
I am proud to say that I have been in contact with a couple of allopathic doctors who have had such a reaction. They have contacted me to thank me for opening their eyes. Two doctors who work in teaching hospitals actually contacted me to say that my book would become required reading in their curriculum not only as a lesson in learning about LBC, but also about the psychological toll that chronic illness can take on a patient and how empathy must always be an integral part of treating every patient.
A couple of weeks ago it was my great privilege to travel to DC to be interviewed together with my Dr. Jemsek by Boyd Matson for National Geographic Radio. You can listen here. ( http://bit.ly/1mMFyxz PLEASE SHARE! ) Once you have listened to the interview, if you are so inclined, please go to NatGeo Weekend's Facebook page and comment about the interview and the importance of this subject. The more positive feedback this interview gets, the more attention we will bring to the subject and the more interview will flood in! We need the exposure!
Next week I will appear on DC's CBS affiliate Channel 9 on an interview about LBC. This is also great exposure which I hope will expand into other regions. I am working very hard during my antibiotic holidays to cram in as much publicity as I can. I hope I am doing you proud.
In any case, this post has been less about my health and so I should let you in on a few details as to what has been happening. My recovery from my hysterectomy while physically not painful at all, caused a great deal of havoc in that I was off treatment for a while and my Babesiosis made it's return. My treatment right now is pretty aggressive, well very aggressive and I have been suffering from complete exhaustion after my 4pm dose even during holidays. I do think that is due to an increase in two of my seizure medications, which was necessary, but makes me very tired. I really do look forward to days of remission when I can have friends over for dinner again, watch TV ANYWHERE but in my bed, and most importantly, put my daughter to bed without the help of my parents. Quite simply, I want my life back. I have had enough.
Sadly, my blue sky and I broke up a few weeks ago but I have to say I have barely shed a tear. It was the right thing at the right time and it needed to be done. When you have made little to no progress in over a year at this age, some changes must be made and such is life. Comforting to me is that I am the most emotionally stable as I have ever been. This means that my treatment is working and that I am nearing remission. I have never been so calm and steady about the loss of a relationship, no matter who ended it, in my life. I am quite simply at peace with it all. I am doing what I am meant to be doing. I am healing as I should. And I know my life is headed in the right direction. It's a wonderful feeling to feel emotionally like a rock for the first time in your life. It's as if I have been given a whole new gift of freedom, not because the relationship ended, of course that is sad and I miss him, but because I am OK with my life and myself as I am in this moment. I have never been able to say that. I believe that is true healing of the brain. My brain is healing. It's an incredible process. And I thank Dr. J for that.
I continue to have a terrible time detoxing and we have been kind of stumped as to why, so I have done some genetic testing and we will be analyzing the raw data over the coming weeks. It will be very interesting to see what gene mutations I may have that are causing my inability to detox, to metabolize, and other basic functions of the body. It's just all very fascinating.
Thank you for bearing with me in my delinquency as a blogger. Life has gotten in the way, but rest assured, it's been because and for you. I am fighting the good fight for YOU. I know you are out there. And I know you are hurting. I see you whether you are visible to me or not. I feel your presence and your need for validation. And I care. So please excuse my absence. Now you know where I have been.
What is important for me to convey to you is that I have not abandoned you. In fact, you are more important to me than ever. I have spent the past several months doing 70+ interviews with local and national radio stations, newspapers, magazines, and television appearances. I do this because I have realized that my book has made some noise. It's rocked the boat and as you have gathered by now, I am not one to sit quietly and allow a collective group off arrogance and greed who have derailed my life get away with it as they do the same to you. And I sure as hell will never allow this to happen to my child. And so while you may not have heard from me on the blog, please do click "HOME" above and take a look at a taste of what I have been up to in the media. Of course I cannot put everything up, but we are keeping up as best we can.
They say that when in crisis one goes into fight or flight mode. Suffice to say I am in full on FIGHT mode. That said, I have consciously taken on this task with a graceful tone, attempting to bring this scientific and medical tug of war back down to a human level. My goal has been not only to help educate the public about the reality of Lyme Borreliosis Complex, but to perhaps grab the ear of an allopathic doctor who might need to eat a piece of humble pie and be reminded that all of us are human. When patients come to their doctors in pain, be it physical, emotional, or mental, it is their responsibility to and privilege to treat that patient, not an entitlement. It is my hope that someone out there might hear my story and reflect on some puzzling patients and perhaps want to learn some more about which I speak and at the very least, treat us like we are humans with hearts, often broken by having been beaten down.
I am proud to say that I have been in contact with a couple of allopathic doctors who have had such a reaction. They have contacted me to thank me for opening their eyes. Two doctors who work in teaching hospitals actually contacted me to say that my book would become required reading in their curriculum not only as a lesson in learning about LBC, but also about the psychological toll that chronic illness can take on a patient and how empathy must always be an integral part of treating every patient.
A couple of weeks ago it was my great privilege to travel to DC to be interviewed together with my Dr. Jemsek by Boyd Matson for National Geographic Radio. You can listen here. ( http://bit.ly/1mMFyxz PLEASE SHARE! ) Once you have listened to the interview, if you are so inclined, please go to NatGeo Weekend's Facebook page and comment about the interview and the importance of this subject. The more positive feedback this interview gets, the more attention we will bring to the subject and the more interview will flood in! We need the exposure!
Next week I will appear on DC's CBS affiliate Channel 9 on an interview about LBC. This is also great exposure which I hope will expand into other regions. I am working very hard during my antibiotic holidays to cram in as much publicity as I can. I hope I am doing you proud.
In any case, this post has been less about my health and so I should let you in on a few details as to what has been happening. My recovery from my hysterectomy while physically not painful at all, caused a great deal of havoc in that I was off treatment for a while and my Babesiosis made it's return. My treatment right now is pretty aggressive, well very aggressive and I have been suffering from complete exhaustion after my 4pm dose even during holidays. I do think that is due to an increase in two of my seizure medications, which was necessary, but makes me very tired. I really do look forward to days of remission when I can have friends over for dinner again, watch TV ANYWHERE but in my bed, and most importantly, put my daughter to bed without the help of my parents. Quite simply, I want my life back. I have had enough.
Sadly, my blue sky and I broke up a few weeks ago but I have to say I have barely shed a tear. It was the right thing at the right time and it needed to be done. When you have made little to no progress in over a year at this age, some changes must be made and such is life. Comforting to me is that I am the most emotionally stable as I have ever been. This means that my treatment is working and that I am nearing remission. I have never been so calm and steady about the loss of a relationship, no matter who ended it, in my life. I am quite simply at peace with it all. I am doing what I am meant to be doing. I am healing as I should. And I know my life is headed in the right direction. It's a wonderful feeling to feel emotionally like a rock for the first time in your life. It's as if I have been given a whole new gift of freedom, not because the relationship ended, of course that is sad and I miss him, but because I am OK with my life and myself as I am in this moment. I have never been able to say that. I believe that is true healing of the brain. My brain is healing. It's an incredible process. And I thank Dr. J for that.
I continue to have a terrible time detoxing and we have been kind of stumped as to why, so I have done some genetic testing and we will be analyzing the raw data over the coming weeks. It will be very interesting to see what gene mutations I may have that are causing my inability to detox, to metabolize, and other basic functions of the body. It's just all very fascinating.
Thank you for bearing with me in my delinquency as a blogger. Life has gotten in the way, but rest assured, it's been because and for you. I am fighting the good fight for YOU. I know you are out there. And I know you are hurting. I see you whether you are visible to me or not. I feel your presence and your need for validation. And I care. So please excuse my absence. Now you know where I have been.
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