For me, one of the most difficult aspects of living with Chronic Lyme Disease is living a life on hold. I have been chronically ill for years, but as discussed in earlier posts, I was refusing to listen to my body. I was over-working and over-committing myself--to the detriment of my body--yet still not living a 'normal' life.
I spend most of my days the exact same way: in bed, going to the doctor, or having treatments done; setting up to 6 alarms during the day for taking different medications at different times. To my frustration, I am usually in too much pain or have too much brain fog to function enough to do anything productive. When I gather up enough energy I am able to write. This blog has given me a sense of purpose with the hope that I am helping others who are in the same situation, feeling lost in the darkness that is Chronic Lyme Disease and the battle to treat and fight it. After writing each post I am left both physically and emotionally drained, but since I began this blog the overwhelming flow of love and support I have received and the hope of helping others makes it worth it all.
I am able on my good days to get out of bed, do yoga, go on (extremely) short walks, and spend more time self-healing. When I am stuck in bed, I am still able to do my detoxing regimens..even if I have to force myself to do so. Ironically during a herx (caused by too many toxins built up in your body), the last thing you feel like doing is detoxing. I will save more for a post on the importance of detoxing during treatment--it is literally a matter of life or death, but back to living a life on hold.
One of the more frustrating aspects of fighting this disease is losing your former self; your identity. I previously (incorrectly) identified myself by my accomplishments and my activities. If you have read my blog before, you know that I was working a minimum of 60 hours a week and served on several charitable boards. I also loved working out, going hiking, climbing, being in nature, playing tennis, etc. The way that I previously identified myself became a major source of anxiety and guilt once my body said, "no more." Using my former standard, I am worthless...unable to help myself in many situations, not being very productive or accomplishing anything. This is why I learned, through pain management counseling, to redefine how I judge my self-worth.
I try not to judge myself, although this is a difficult task. I am working to find peace with my body as it is and not judge my health--to recognize it, or the lack thereof, accept it, and move on and only focus on fighting this disease. I will also touch more on this subject on a post about guilt, which is another ugly monster that rares its head while you are undergoing treatment for Lyme. More on that later.
So here I am. Stuck in bed. Unable to concentrate enough to read or watch anything on television that requires any brain cells (hello my new obsession with The Real Housewives and other non-thought inducing television shows). I lay in bed, fighting this internal battle within my body, but externally doing nothing; accomplishing nothing. I see (rather, hear) my friends getting promotions, exciting new jobs, getting engaged, getting married, and having children--living their lives the way God intended us to.
I am almost 27 years old (give it a week). This should be a very exciting time in my life, but I have lost my 20's to this disease. I have an amazing boyfriend and would probably already be married if I were not so ill. My boyfriend and I have discussed the topic at length and have come to the decision that it is unfair to both of us to start a marriage with me being unable to care for myself. He is more often my nurse than he is my boyfriend, although he tells me it is one in the same.
My little sister just got engaged and I have already started to hear the "it will happen to you, too...one day" condolences. Like I'm really sitting on the edge of my seat (bed), waiting to be whisked away so that I can stumble down the aisle (if you have Lyme, you know the impossibility of being able to walk in a straight line, if at all in some cases). Can you sense my sarcasm?
I want to enter my marriage with my health, something that doctors tell me that within a year and a half I will have 80% back. This is a true blessing--as horrible as this lifetime journey has been, there are many who have it much worse. Many Lymies are completely debilitated--they have hospital beds instead of a real bed, they have to have a nurse bathe them in their own home (if they are not in the hospital), and they are bound to their wheelchair. Many do not survive this disease; it has taken so many lives. I am one of the lucky ones and am blessed to have arguably the best Chronic Lyme Specialist in the country. And I look forward to the day when I have my health back after all of these long years.
Until then, I sit and watch as life passes me by. Missing out on so many experiences--being forgotten about by so many former friends. Watching as former best friends get married and not being asked to be in the wedding. (Technically I was asked once, but the topic was not mentioned again once my friend realized how sick I was. I sat and watched as she and her bridesmaids walked down the aisle.) This all has been a big blow to my ego and has caused my heart to break.
I apologize that this particular post is not an uplifting one. I will write later about the scientifically studied "normal" reactions people have to a friend who has a disease that they cannot see or do not understand. It helps me to make sense of my loss of peers and their reactions to me being sick, but this post is about what I have lost.
I have lost my favorite hobbies, all of which included being physically active. I have lost what makes me feel most alive--going to events, being with friends, raising money for charity, and most importantly being active and in nature. So many friendships that have disappeared have given the lyrics from "Find Out Who Your Friends Are" new meaning for me.
Lyme has stolen so much from me and from others who suffer from this horrible disease and its co-infections. It has taken away from me so much of what I once loved. Again, I apologize for the lack of positivity in this post, but my decision to be brutally honest on here has outweighed my desire to always come across as positive and strong. Lyme has taken too much from me, even parts of my sanity, and I am fighting every hour of every day to get back as much as I can.
Friday, April 29, 2016
Tuesday, October 13, 2015
Raising Awareness via Fashion
Here is a blog post I wrote for The Southern Atelier (my newest venture). Thirty-A Review published the pictures from our Lyme photo shoot and included a small blurb about Lyme Disease.
Check it out by clicking here: http://www.thesouthernatelier.com/index.php/2015/07/07/garden-party/
Take a look at www.thesouthernatelier.com and let me know what you think! We are focusing on Lyme Disease Awareness Month during May.
💚 Sarah
Check it out by clicking here: http://www.thesouthernatelier.com/index.php/2015/07/07/garden-party/
Take a look at www.thesouthernatelier.com and let me know what you think! We are focusing on Lyme Disease Awareness Month during May.
💚 Sarah
Tuesday, December 30, 2014
To My Soul Friend
I write this to you, friend of my soul, with a heart filled with gratitude. There are but a few of you walking this Earth, as I feel this divine phenomenon does not occur often, and the love I feel for you is not easily explained and can never be replicated. There is no doubt in my mind that the gift of an Anam Cara is sent from God and is one of the greatest blessings in companionship outside of marriage and family that has been bestowed upon the human race.
Celtic tradition is ripe with a beautiful and poetic understanding of love and friendship that transcends how we define relationships today. Anam Cara means "The Friend of Your Soul," or your soul-friend. Anam is the Gaelic word for 'soul' and Cara signifies 'friend'. It is believed that your soul radiates around your physical body--this radiation is what some describe as energy and others as an aura--and that when you completely and openly connect with another person your two souls begin to flow together and move as one.
A parallel concept to the intertwining of souls through deep friendship in Anam Cara is the term 'Namaste.' Used in yoga practice, my personal view is it signifies that, with gratitude, the light in my heart recognizes the light in your heart. Thus, the light in me recognizes the light in you. When this recognition occurs there is no need for mask or pretension--you simply are. Without judgement or prejudice, your soul is bare and unguarded. Though vulnerable, there is a sense of security in souls connecting in such a way that forges a sacred and dear friendship that will stand the test of time.
On a handful of occasions I have been lucky enough to experience this meeting of the hearts and minds. Most often this has occurred upon first meeting someone--that exact moment you may not know the person very well but are drawn to them; your heart's light has connected with theirs and has formed an unbreakable bond. Your kindred spirits have recognized one another and are inexplicably drawn together.
According to Celtic Tradition, the Anam Cara was "originally someone to whom you confessed, revealing the hidden intimacies of your life....you could share your innermost self" and the friendship is an act of "recognition and belonging" (Lisa Sabin-Wilson). The definition goes on to explain that this Soul Friendship can only be gained after you have first recognized your own inner light and beauty. By forming an Anam Cara, you are able to "awaken your awareness of your own nature and experience the joy of others." But this friendship can only be formed when you are able to recognize, love and accept the individual beauty that you hold within yourself.
According to tradition, with a Soul Friend, there is no limitation of space or time; "the soul is a divine light that flows into you and into your Other." The Irish believe that when you are blessed with an Anam Cara, you have arrived at the "most sacred place: home."
I have been blessed to meet a handful of Soul Friends throughout my life. I write this to thank them for their kindness and devotion while I endured the greatest struggle of my life and fought to seek remission.
Soul Friends, for me, have come in many forms. My first was a beautiful ballerina with an innate sense of style and that connected with the polar-opposite tomboy in me when we were little girls. We were friends but it was not until much later, as our souls and our hearts matured, that we formed a bond that death itself will not be able to part. In this Soul Friend, God has blessed me with what I now consider a sister and a friendship that is so sacred to me.
In my early twenties I came across two Anam Cara's at the same place and at the same time. Our souls are so intertwined that we can go months to years without speaking, but the second we are reunited it is as if no time has lapsed at all.
But sometimes we do not recognize the same light that exists in someone else upon first meeting; therefore there is no love-at-first-sight with these Soul Friends. Maybe our spirits were at different stages during this time, or perhaps we were too busy to listen to the light that existed between our souls that was begging to be acknowledged.
I reconnected with one of these Soul Friends that I missed the first time around through our shared bond of suffering: Lyme Disease. I deeply regret that we did not find this gifted friendship the first time...we did not yet recognize the ancient and eternal friendship of our souls but now share a relationship and friendship that the physical distance between us does not affect the closeness that we share.
My most seemingly unlikely (at the time) Anam Cara came during a period when I may not have had the courage to "give absolute permission to come into the deepest temple" of my spirit. I was sick but still in denial--fighting so hard against the inevitable. This woman, who I now call Soul Friend, and I were not compatible at first. Then, a few years later, we both went through significant spiritual rebirths in similar ways but for different reasons. Our renewed spirits quickly found one another and this Soul Friend is now my mentor--the older sister I never had but always wanted. I greatly look up to her and appreciate the wisdom she shares with me as well as the kindness her heart has shown me during this most difficult time. This Soul Friend is truly a blessing from God.
Finally, I thank my most recent Soul Friend, who was the impetus for this post. This is someone I greatly respect and during a conversation last night he mussed, "I feel like we know each other better than we actually do." He wisely noted that our bond in Christ and a bond in suffering brought our spirits together as our souls recognized the light in one another.
To all my Spirit Friends: You have been incredibly good to me, I am forever grateful, and I love you for the deep bond that has been formed between our light. My soul recognized your goodness and your spirit and I am truly blessed to call you my Anam Caras. As a Soul Friend, you always accept me for who I truly am, holding me in beauty and light--which stems from a realization of your own beauty and light. Awakening to this deeper level of friendship has brought me both joy and peace. I am grateful that the light in you recognized the light in me.
"Love is the threshold where the divine and human ebb and flow, one into the other." I hope that you are all blessed with a sense of the Holy in everyday life through friendships of love that resonates deep within your being.
With much gratitude,
Sarah
Celtic tradition is ripe with a beautiful and poetic understanding of love and friendship that transcends how we define relationships today. Anam Cara means "The Friend of Your Soul," or your soul-friend. Anam is the Gaelic word for 'soul' and Cara signifies 'friend'. It is believed that your soul radiates around your physical body--this radiation is what some describe as energy and others as an aura--and that when you completely and openly connect with another person your two souls begin to flow together and move as one.
A parallel concept to the intertwining of souls through deep friendship in Anam Cara is the term 'Namaste.' Used in yoga practice, my personal view is it signifies that, with gratitude, the light in my heart recognizes the light in your heart. Thus, the light in me recognizes the light in you. When this recognition occurs there is no need for mask or pretension--you simply are. Without judgement or prejudice, your soul is bare and unguarded. Though vulnerable, there is a sense of security in souls connecting in such a way that forges a sacred and dear friendship that will stand the test of time.
On a handful of occasions I have been lucky enough to experience this meeting of the hearts and minds. Most often this has occurred upon first meeting someone--that exact moment you may not know the person very well but are drawn to them; your heart's light has connected with theirs and has formed an unbreakable bond. Your kindred spirits have recognized one another and are inexplicably drawn together.
According to Celtic Tradition, the Anam Cara was "originally someone to whom you confessed, revealing the hidden intimacies of your life....you could share your innermost self" and the friendship is an act of "recognition and belonging" (Lisa Sabin-Wilson). The definition goes on to explain that this Soul Friendship can only be gained after you have first recognized your own inner light and beauty. By forming an Anam Cara, you are able to "awaken your awareness of your own nature and experience the joy of others." But this friendship can only be formed when you are able to recognize, love and accept the individual beauty that you hold within yourself.
According to tradition, with a Soul Friend, there is no limitation of space or time; "the soul is a divine light that flows into you and into your Other." The Irish believe that when you are blessed with an Anam Cara, you have arrived at the "most sacred place: home."
I have been blessed to meet a handful of Soul Friends throughout my life. I write this to thank them for their kindness and devotion while I endured the greatest struggle of my life and fought to seek remission.
Soul Friends, for me, have come in many forms. My first was a beautiful ballerina with an innate sense of style and that connected with the polar-opposite tomboy in me when we were little girls. We were friends but it was not until much later, as our souls and our hearts matured, that we formed a bond that death itself will not be able to part. In this Soul Friend, God has blessed me with what I now consider a sister and a friendship that is so sacred to me.
In my early twenties I came across two Anam Cara's at the same place and at the same time. Our souls are so intertwined that we can go months to years without speaking, but the second we are reunited it is as if no time has lapsed at all.
But sometimes we do not recognize the same light that exists in someone else upon first meeting; therefore there is no love-at-first-sight with these Soul Friends. Maybe our spirits were at different stages during this time, or perhaps we were too busy to listen to the light that existed between our souls that was begging to be acknowledged.
I reconnected with one of these Soul Friends that I missed the first time around through our shared bond of suffering: Lyme Disease. I deeply regret that we did not find this gifted friendship the first time...we did not yet recognize the ancient and eternal friendship of our souls but now share a relationship and friendship that the physical distance between us does not affect the closeness that we share.
My most seemingly unlikely (at the time) Anam Cara came during a period when I may not have had the courage to "give absolute permission to come into the deepest temple" of my spirit. I was sick but still in denial--fighting so hard against the inevitable. This woman, who I now call Soul Friend, and I were not compatible at first. Then, a few years later, we both went through significant spiritual rebirths in similar ways but for different reasons. Our renewed spirits quickly found one another and this Soul Friend is now my mentor--the older sister I never had but always wanted. I greatly look up to her and appreciate the wisdom she shares with me as well as the kindness her heart has shown me during this most difficult time. This Soul Friend is truly a blessing from God.
Finally, I thank my most recent Soul Friend, who was the impetus for this post. This is someone I greatly respect and during a conversation last night he mussed, "I feel like we know each other better than we actually do." He wisely noted that our bond in Christ and a bond in suffering brought our spirits together as our souls recognized the light in one another.
To all my Spirit Friends: You have been incredibly good to me, I am forever grateful, and I love you for the deep bond that has been formed between our light. My soul recognized your goodness and your spirit and I am truly blessed to call you my Anam Caras. As a Soul Friend, you always accept me for who I truly am, holding me in beauty and light--which stems from a realization of your own beauty and light. Awakening to this deeper level of friendship has brought me both joy and peace. I am grateful that the light in you recognized the light in me.
"Love is the threshold where the divine and human ebb and flow, one into the other." I hope that you are all blessed with a sense of the Holy in everyday life through friendships of love that resonates deep within your being.
With much gratitude,
Sarah
Tuesday, September 23, 2014
How to Safely Remove a Tick
How To Safely Remove A Tick
Thanks to Lyme Disease Posters on Facebook for this important information.
"It's Not Over Yet" - a Song Dedicated to a Lyme Warrior
This song is so touching and beautiful. I urge you to share it with those you know who are fighting any battle, but especially with others who have Lyme Disease. Just knowing that a song was written especially for us makes it feel more powerful to me when I listen to it. It gives me that extra boost when I find it difficult to find the physical and mental strength to actively keep fighting.
I am a Lyme Warrior. This is my fight song. I will not give up and I will defeat this disease.
Comments From Alabama Lyme Disease:
"In this video Luke and Joel Smallbone, the brothers behind for King & Country, discuss the inspiration behind one of the songs on their soon to be released album "Run Wild. Live Free. Love Strong".
I am a Lyme Warrior. This is my fight song. I will not give up and I will defeat this disease.
Comments From Alabama Lyme Disease:
"In this video Luke and Joel Smallbone, the brothers behind for King & Country, discuss the inspiration behind one of the songs on their soon to be released album "Run Wild. Live Free. Love Strong".
The song "It's Not Over Yet" was written as an anthem of encouragement for their younger sister Libby, 22, who contracted Lyme disease, a tick-borne bacterial illness, a decade ago while working at a summer camp (she continues to suffer the lasting effects from the disease)."
Give the song a listen and read the lyrics posted below. Keep on fighting, it's not over yet, lymies.
Lyrics to "Its Not Over Yet"
They are inside your head
You got a voice that says
You won't get past this one
You won't win your freedom
It's like a constant war
And you want to settle that score
But you're bruised and beaten
And you feel defeated
This goes out to the heaviest heart
[Chorus:]
Oh, to everyone who's hit their limit
It's not over yet
It's not over ye-et
And even when you think you're finished
It's not over yet
It's not over ye-et
Keep on fighting
Out of the dark
Into the light
It's not over
Hope is rising
Never give in
Never give up
It's not over
Yea-et-et, woah
Yea-et-et, woah
Oh, game set match
It's time to put it in your past, oh
Feel the winter leavin'
It's redemption season
Long live the young at heart (Here we are)
Cheers to a brand new start (Here we are)
We're revived and breathing
To live a life of freedom
[Chorus:]
Oh, to everyone who's hit their limit
It's not over yet
It's not over ye-et
And even when you think you're finished
It's not over yet
It's not over ye-et
Life is a race we run
So run till the race is won
Don't you ever give up (Here we are)
Oh no never give up (Here we are)
Life is a race we run
So run till the race is won
Don't you ever give up (Here we are)
We will never give up (Here we are)
[Chorus:]
Oh, to everyone who's hit their limit
And even when you think you're finished
It's not over yet
Oh, to everyone who's hit their limit
It's not over yet
It's not over ye-et
And even when you think you're finished
It's not over yet
It's not over ye-et
Keep on fighting
Out of the dark
Into the light
It's not over
Hope is rising
Never give in
Never give up
It's not over
Yea-et-et, woah
Yea-et-et, woah
Yea-et-et, woah
Yea-et-et, woah
You got a voice that says
You won't get past this one
You won't win your freedom
It's like a constant war
And you want to settle that score
But you're bruised and beaten
And you feel defeated
This goes out to the heaviest heart
[Chorus:]
Oh, to everyone who's hit their limit
It's not over yet
It's not over ye-et
And even when you think you're finished
It's not over yet
It's not over ye-et
Keep on fighting
Out of the dark
Into the light
It's not over
Hope is rising
Never give in
Never give up
It's not over
Yea-et-et, woah
Yea-et-et, woah
Oh, game set match
It's time to put it in your past, oh
Feel the winter leavin'
It's redemption season
Long live the young at heart (Here we are)
Cheers to a brand new start (Here we are)
We're revived and breathing
To live a life of freedom
[Chorus:]
Oh, to everyone who's hit their limit
It's not over yet
It's not over ye-et
And even when you think you're finished
It's not over yet
It's not over ye-et
Life is a race we run
So run till the race is won
Don't you ever give up (Here we are)
Oh no never give up (Here we are)
Life is a race we run
So run till the race is won
Don't you ever give up (Here we are)
We will never give up (Here we are)
[Chorus:]
Oh, to everyone who's hit their limit
And even when you think you're finished
It's not over yet
Oh, to everyone who's hit their limit
It's not over yet
It's not over ye-et
And even when you think you're finished
It's not over yet
It's not over ye-et
Keep on fighting
Out of the dark
Into the light
It's not over
Hope is rising
Never give in
Never give up
It's not over
Yea-et-et, woah
Yea-et-et, woah
Yea-et-et, woah
Yea-et-et, woah
Sunday, September 21, 2014
Your New Lyme Anthem (and some random football commentary)
An incredible woman once told me that when her husband, who was undergoing treatment for Chronic Lyme along with a myriad of co-infections, got really down and depressed she would turn on Christian praise music. Even if it is just in the background, it would help lift his spirits and change his mood.
This past weekend, after getting some very encouraging news from my LLMD on Thursday, I went through a really rough herx that lasted for days. Admittedly, I threw myself a pity party.
I am finally well enough on certain days that I can get out of the house and someone had given me and my boyfriend tickets with incredible seats to the Bama vs. Florida football game. (I apologize in advance to any Gator fans that may be reading this blog).
I was a student when Tyrone Prothro, famously known for making one of the most incredible catches in NCAA history (see video of "The Catch"...and picture...can you tell I'm college football obsessed?!), suffered a career-ending complete fracture of both major bones--tibia and fibula--of his lower left leg in the 2005 Florida game.
Sitting in the stadium while watching the majority of the Florida fans cheering and celebrating the injury with the Gator Chomp while our beloved Prothro was carted off the field is a memory that will be seared in my mind forever and created a grudge that may never be forgiven.
In all fairness, Bama fans retaliated in a classless way when we beat the Florida Gators and their beloved Tim Tebow in the 2009 SEC Championship game by replacing "Hey Gators!" with "Hey Tebow" in our Rammer Jammer victory chant as he shed, ahem, a few tears on the sideline.
I admit to thoroughly enjoying loudly lending my voice to this taunting chant in the Georgia dome that year, but in my defense, I spent my entire college career watching Alabama lose most games in its fall from grace as a historical football powerhouse. So when, as a graduate student, we finally started playing like the Bear himself was smiling down on us from Heaven, I completely lost my composure and enjoyed ever tear that fell from Tebow's Heisman-winning face.
On a side note, I now realize that Tim Tebow is an incredible man and I have nothing but respect for him. Seeing a football player openly praise God in this era of dog-fighting and domestic violence in elevators is a breath of fresh air. I wish him all the best in his career as a football commentator and genuinely have enjoyed watching him this season on the SEC Network (didn't he look good in that houndstooth hat when he picked Bama to win last Saturday? But I digress...).
And for those who were wondering...the game was incredible. I was able to watch Bama throw it down the field in HD from my couch like the team never has in my lifetime. It was an exciting game, both teams played really well, and we walked away with an impressive win. Although it has been years since I've been well enough to attend a game, I look forward to potentially going to one later this season. I am staying positive and know that with God's help I will continue to get well and will one day step back into Bryant-Denny stadium knowing that for me, it will be a huge win, regardless of the outcome of the game. And...I might even feel a little normal.
Edited:
Sorry for all the IT issues. I'm not sure why the videos do not show up on mobile devices (it just shows up as a huge blank space), so I have just put the links on there. Also, to avoid any confusion, my pity party was based on a lifetime of having lyme disease and the effects of a herxheimer reaction, not simply missing a football game. I focused so much on the game to show how, when you have Lyme, sometimes being able to go or do the simplest things are HUGE.
I hope that you love the song and find it helpful, no matter what battle you are fighting.
love and healing,
S
ps-
If you enjoyed this article or any of my other blog posts (most of which focus more on the literal aspects of lyme disease), help a lymie out and share this blog :)
This past weekend, after getting some very encouraging news from my LLMD on Thursday, I went through a really rough herx that lasted for days. Admittedly, I threw myself a pity party.
I am finally well enough on certain days that I can get out of the house and someone had given me and my boyfriend tickets with incredible seats to the Bama vs. Florida football game. (I apologize in advance to any Gator fans that may be reading this blog).
Quick Disclaimer: If you have no interest in college football skip the next few paragraphs...I finally make my point and I will place an asterisk where you should start reading again.
I was a student when Tyrone Prothro, famously known for making one of the most incredible catches in NCAA history (see video of "The Catch"...and picture...can you tell I'm college football obsessed?!), suffered a career-ending complete fracture of both major bones--tibia and fibula--of his lower left leg in the 2005 Florida game.
 |
| Picture credit to http://www.tyroneprothro.com/ |
[If you are on a mobil device and cannot see the video of Prothro and "The Catch", just click this link due to IT issues: http://youtu.be/Y7DSmFvDoYk ]
I admit to thoroughly enjoying loudly lending my voice to this taunting chant in the Georgia dome that year, but in my defense, I spent my entire college career watching Alabama lose most games in its fall from grace as a historical football powerhouse. So when, as a graduate student, we finally started playing like the Bear himself was smiling down on us from Heaven, I completely lost my composure and enjoyed ever tear that fell from Tebow's Heisman-winning face.
On a side note, I now realize that Tim Tebow is an incredible man and I have nothing but respect for him. Seeing a football player openly praise God in this era of dog-fighting and domestic violence in elevators is a breath of fresh air. I wish him all the best in his career as a football commentator and genuinely have enjoyed watching him this season on the SEC Network (didn't he look good in that houndstooth hat when he picked Bama to win last Saturday? But I digress...).
**Alright non-football fans, pick back up HERE:**
So, after receiving good news from my LLMD and having a relatively herx-free treatment week, I was elated that my health is improving and looking forward to finally getting out of the house and going to a a great football game with a strong tradition of rivalry. In the South football games are social affairs--we get dressed up, tailgate in tents or at our favorite bars from college, and see just about everyone we know, including friends I have not seen in years. Having Lyme puts a stop to any form of social life, so between the game and getting to see friends, I was ready to feel "normal" for the first time in as long as I can remember. I had been feeling so relatively well all week that I just knew I would be able to participate in all the fun (in a Lyme-responsible way, but still) without having to use an excessive amount of certain medications to do so.
This along with the fact that I had convinced myself my herxing from now on would be hard but manageable led to one of the biggest pity-parties I have thrown myself thus far in this journey through treatment. This was one of those mind-numbing, being tortured from the inside out kind of herxes that just would not quit. I was miserable. I was angry.
My anger, for the first time in almost a year, was turned towards God. "WHY!" I screamed over and over again. "Why are you punishing me?" I was so mad at Him for giving me this disease, for all of the things Lyme has stolen from me, for broken relationships due to my health, for the loss of my 20's, for living 28 years with these evil bugs and parasites living inside of me and wreaking havoc on my mind, body, and spirit.
In my anger and confusion I even asked my boyfriend what I had done that caused God to punish me so. When I am in my right mind I know the following to be true: I do not believe in a God full of wrath--I believe in a God of love; a God whose Son suffered and died on the cross to forgive our sins. A God of beauty and warmth. A God of creation. A God that is good. A God that heals. And a God that has healed me--mind, body, and soul.
But this weekend I had forgotten that God. I was angry with the "punishment" He had given me. Babesiosis, one of my co-infections, is one of the plagues that God sent to the evil Pharaoh. In my Lyme-rage tinted lenses, He had sent this plague to me. To punish me. To torture me.
Just so you know, I do not think that God 'gave' me the diseases I have. I do think they are evil. But that is for another time, another post...
So, looking back to the first sentence...I did not even remember the advice of listening to Christian-based music at the time of this torturous herx, anger, and self-pity. But my sister did send me to a link to a song that was written about a girl fighting Lyme.
I listened to it. And listened to it again. And again. I cried as I listened to the words. I cried for the loss of a regular life. I cried for all those suffering from this disease. I cried for all the lives needlessly lost.
And I cried because God is healing me from this disease. I cried tears of joy as I realized it truly is not over yet--I can keep on fighting.
The tears were cathartic and calmed me down. My anger subsided. I awoke the next morning and I felt relatively good. The herx had run its course and I prayed to God for forgiveness for my anger, apologizing for blaming Him for my illness.
The purpose of this long-winded, rambling and at times random blog post was to share this song with you. Give it a listen. And, when you are herxing and emotionally hurting, listen again. Have faith, for it is not over yet.
"Oh, to everyone who's hit their limit, it's not over yet, it's not over yet, and even when you think you're finished, it's not over yet, it's not over yet. Keep on fighting, out of the dark and into the light (it's not over), hope is rising, never give in, never give up, it's not over yet"
Listen Here by Clicking 'Play' (and if you cannot see the video just click on this link to listen: http://youtu.be/maSQ3cgvta0)
Be sure to watch this quick video of the band talking about the song that they wrote for their youngest sister and her battle with Lyme Disease: http://youtu.be/xaSM1G37yhU
Check out the lyrics by clicking the blue words: For KING & COUNTRY - It's Not Over Yet Lyrics | MetroLyrics
Edited:
Sorry for all the IT issues. I'm not sure why the videos do not show up on mobile devices (it just shows up as a huge blank space), so I have just put the links on there. Also, to avoid any confusion, my pity party was based on a lifetime of having lyme disease and the effects of a herxheimer reaction, not simply missing a football game. I focused so much on the game to show how, when you have Lyme, sometimes being able to go or do the simplest things are HUGE.
I hope that you love the song and find it helpful, no matter what battle you are fighting.
love and healing,
S
ps-
If you enjoyed this article or any of my other blog posts (most of which focus more on the literal aspects of lyme disease), help a lymie out and share this blog :)
Tuesday, March 4, 2014
Illest Optimist: What DO you do all day?
This is a guest blog written by Ashley Strommen from Scottsdale, Arizona who writes her own blog called Illest Optimist. For two years Ashley was was mis-diagnosed, mis-understood, and mis-erable! After months of diagnostic testing she found out the culprit was Lyme Disease and the diagnosis has changed her life. Through her blog she uses her spunky voice to teach about health, shower those around her with positivity, and fight for Lyme Awareness.
What do you do all day?
I’ve had people ask me, ‘ What do you do all day? Aren’t you BORED? ‘
For all the inquisitive minds out there, let’s clear this up:
Here’s a list of what you may THINK I do all day and a perfectly descriptive soundtrack to listen to while you read:
- Watch daytime talk shows: Kelly Ripa’s cute tiny butt, Dr. Phil’s endless health rants, and Ellen’s awkward dance moves
- Grub on junk food
- Sleep & Chillax
Here’s a list of what I ACTUALLY do all day and a perfectly descriptive soundtrack to listen to while you read:
- Wake up because of searing pain at anywhere from 4-6AM
- Make hot lemon water (fresh lemon essence from the previous days juicing) and sour face chug to get a teensy bit less nauseous while waiting for the sauna to heat up
- Take a 30 minute infrared sauna while reading the book The Secret and repeating daily mantras or some light monk-like prayer
- Shower and scrub off the toxins that seeped through my pores in the sauna while trying not to throw up (brings back flashbacks of college)
- Painfully get dressed in ‘normal healthy people clothing’ of jeans and a tank top to feel like less of a stay at home loser (with the exception of footy PJ’s which I sometimes wear to feel like an outlandish superhero)
- Read an inspirational book and rest for a half hour/hour or sleep because the mere act of showering and dressing exhausts me
- Clean dinner dishes from the night before (unless the busy boyfriend who has a billion things on his plate has graciously taken care of these already)
- Make daily green juice: take all ingredients out of fridge (2 lemons, 1 apple, 1 kiwi, ½ jalapeño, spinach, kale, parsley, cucumber), cut and peel veggies and fruit, put through juicer, clean juicer, clean kitchen counters, put juice in fridge (I’m too sick at that point to actually drink the juice)
- Make my beautiful roommate bfriend lover 2.5 over-easy eggs and a protein shake (in magic bullet blend 1 ripe banana, 1 scoop vanilla protein powder, some milk, 2 ice cubes, and a kiss)
- Make daily salad: mornings are when I feel the best so I need to prepare nutritious food for later in the day when I’ll be too sick to make it. I prepare a salad of kale, spinach, tomatoes, onion, smoked salmon with a dressing of apple cider vinegar, Dijon mustard, and a splash of olive oil; put salad in fridge as I’m too sick to eat it right than
- Take my daily 10 supplements with water
- Read an inspirational book and rest for a half hour/hour or sleep because the mere act of juicing and prepping food makes it impossible to function
- Spend an hour drinking the darn green juice (hard for me to ingest anything but drinking this helps)
- Complete “sick work” for a few hours: study for my nutrition certification, write blog posts, investigate clean energy sources, research new Lyme treatments, read health blogs, analyze real estate market, listen to inspirational speech’s or church sermons online
- Attempt to eat my prepared salad; usually takes me around an hour or two to choke it all down
- Assemble and drink Mediclear Plus (gross poop powdered nutrition supplement that I mix with water, ground flax seed, and one ice cube)
- Complete “sick work” for another few hours
- Catch up with mantoy when he comes home
- Prepare and eat dinner: usually consisting of quinoa, black rice, or wild rice, chicken (for the man of the house) or fish (for both of us), and baked or steamed vegetable (bok choy, carrots, edemame, or potatoes etc.)
- Watch an episode or two of Criminal Minds, Law and Order SVU (because I’m OBSESSED with Iced T- yes that’s what I call him), Modern Family, New Girl, or The Mindy Show with the boyfriend
- In bed asleep by 7pm or if it’s a crazy late night 8pm
- Two days a week I complete all these tasks (minus the ‘sickwork’) and undergo 3 hours of treatment
Lyme is not the same as the Flu in which you stay home, chill, and rest for a few days. I’m either sick from the Lyme or sick from my Lyme treatments every day and have been for over two years.
Therefore I can’t grub on whatever crap is lying around because this is the time when my body needs a high dosage of nutrients more than ever. Because I can barely stomach food I need to be incredibly selective with every item I put in my body and make sure they are products that will help speed my recovery and provide me with necessary energy.
As much as I’d like to chill all day, I can’t. I need to have a purpose and a will to live. I need to accomplish tasks to feel good about myself. If I didn’t do this routine I fear my symptoms would be even worse than they currently are, and I’d be overwhelmingly depressed.
I know I’m a nutcase but I’m hoping this neurotic routine is the driving force of my betterment. My schedule may seem a little excessive for a sick mongrel but I’m so proud of the strides I’m making and anticipative for the next few months of recovery.
Lastly here is my FAVORITE song on the planet because I truly believe everyone needs a daily dose of my life-long-love future-ex-husband mohawk-man-crush tattoo’d-dream-boat Travis Barker (maybe if I had him playing drums for me every morning I’d get better lickedy split… ya think?):
A quick note from Sarah: I am excited to announce that Ashley and I will be guest blogging for each other once a month! I strongly urge you to go check out the rest of Ashley's blog posts on Illest Optimist. Our blogs exhibit the perfect juxtaposition--she is treating Lyme the natural route while I am using antibiotics (along with non-traditional medicine), so our journeys to wellness will be different. This is really important for those with Lyme to know--that no one method of treatment fits everyone with Lyme. Our symptoms and co-infections differ so vastly that each Lymie needs an individualized treatment method. Remember, it is YOUR body and your decision on how you want to treat your Lyme; you know your body best. I hope you enjoyed her blog post, there will be more coming soon! I picked this particular post to begin with since she does just an excellent job explaining what people think we do and what we really do on a daily basis. This is a great one to share with family and friends who do not quite understand that having Lyme is a full-time job. And beautiful Ashley (pictured here), along with so many others with Lyme, fits that Lyme adage that most of us face, "But you don't look sick?"Friday, February 28, 2014
Lack of Necessary Funding
Hi to all! I want to ask you a quick favor: if you can, please consider donating to the Alabama Lyme Disease Association. We are growing but relatively new and need some help so that we can spread much-needed awareness in our state. If you can spare a few dollars--that would be incredible. If you can spare a few thousand dollars, that would be incredible, too :)
If you cannot afford to donate, please share this link on your facebook page and maybe it will reach someone who can. I know that God will provide for us; we just have to trust in him. Thank you all.
Here is the link:
http://www.gofundme.com/Alabama-Lyme-Disease
If you cannot afford to donate, please share this link on your facebook page and maybe it will reach someone who can. I know that God will provide for us; we just have to trust in him. Thank you all.
Here is the link:
http://www.gofundme.com/Alabama-Lyme-Disease
Thursday, February 27, 2014
My Personal Lyme Story: The Fight for my Life
Sarah Israel
Contributing Writer
Friday, Jan 10,2014
PC: Erin Zimmerman Photography \ MUA: Morgan King Makeup \ Wardrobe: Siren's at the Beach (Santa Rosa Beach) \ Styling: Rachel K of The Southern Atelier
Last year, after being sick for over 10 years, I began sharing about my disease. I am an incredibly private person and until last May, I only gave specifics of my illnesses to those closest to me. I did it to protect myself, build barriers, so that I would not appear weak. But mostly, I now believe I did it because of my pride.
I have always taken very good care of my physical-self, working out very hard and eating healthy. Having people know that I was 'sick' was embarrassing to me. Plus, many of my diagnoses and the treatments that come with them are topics that do not belong in civilized conversation, especially with my male friends. It was never something I was comfortable sharing.
Every few years I would get a handful of diagnoses and begin treatment, but I was still sick despite my multiple doctors’ best efforts. Finally, in June of 2012, I was diagnosed in DC by one of the leading Lyme Literate Medical Doctors (LLMD), as having Late Stage Chronic Lyme Disease and several co-infections, including Babesiosis and Bartonella.
All of the diseases I had been diagnosed with through-out my lifetime were caused by Chronic Late Stage Lyme Disease as well as it’s co-infections, which are often worse than the Lyme itself. I, along with most Chronic Lyme patients, have several co-infections, but I will only cover the two worst ones I have. The first, and most difficult to treat is Babesiosis, a malaria-like parasitic disease caused by infection with Babesia, a genus of protozoal piroplasms (called “Malaria at it’s worst”). The second major co-infection I have is Bartonella. “Bartonella henselae is the causative agent of the notorious cat-scratch fever, endocarditis, and several other serious diseases in humans. It is not uncommon for patients to contract encephalopathy.”http://www.envita.com/lyme-disease/chronic-lyme-disease-coinfection-bartonella-causing-more-chronic-fatigue-problems#sthash.054HxyVR.dpuf
This diagnosis of Late Stage Chronic Lyme Disease (CLD) was like an umbrella--it covered every single illness I had ever been diagnosed with (see list below), because those illnesses are all symptoms of CLD. CLD is known as "The Great Imitator" for mimicking over 300 diseases such as MS, ALS, Parkinson's, Alzheimer's and Rheumatoid Arthritis, to name a few. My sister, Julia, was diagnosed with Juvenile Rheumatoid Arthritis at the age of 2 and we have recently learned that her JRA was actually caused by CLD that we both contracted in vitro. Click here to read her story:http://whenlifehandsyoulyme.blogspot.com/2013/08/guest-blog-lifelong-battle-with-jra-lyme.html
Here is a list of the diagnoses I received over my lifetime that were caused by CLD:
Malignant Brain Tumor
Mononeuritis Multiplex
Neuroborreliosis
Fibromyalgia
Idiopathic Hypersomnia
Mitral Valve Prolapse
Dysautonomia
Hypothyroidism/Hyperthyroidism
Post Traumatic Stress Disorder
Fibrocystic Breast Disorder
Complex Ovarian Cysts
Endometriosis
2 Abdominal Hernias
Vestibulitis
Interstitial Cystitis
Pelvic Floor Muscle Dysfunction (High Tone, Rated: Severe)
Pelvic Congestion
Tumors in Pelvic Floor
Appendix Stones
Kidney Stones
Arthritis: Left SI joint and Left Knee
Narrowing of both SI Joints
Abnormality in Cervical Spine
Coccydynia
Anxiety/Depression
Non-Epileptic Seizures
Pain Induced Panic Attacks
Severe Muscle Spasms
Acute Paralysis
Speech Paralysis
Symptoms of Multiple Sclerosis
Symptoms of Parkinson’s Disease
Relieved that I now had a reason to why I was not getting any better from previous years of treatment and all three pelvic surgeries, I began telling my local doctors the 'good news.' For me, being diagnosed with Lyme, something treatable, was a blessing. I had been facing a lifetime of sickness with doctors who had either given up on me or told me we had tried everything possible with no success. We all thought I would be severely sick the rest of my life and never truly get any answers. I was advised to have my eggs frozen, as my reproductive system would eventually fail. I knew that treatment for CLD would be grueling, but it was much more favorable to go through years of torturous treatment, put it into remission, and move on with my life than to live a life of chronic illness, wondering why I would never get well.
I quickly learned that CLD carries many negative connotations and many are extremely skeptical. I had some doctors tell me that it does not exist, others that it does not exist in the South (although research has proven otherwise). I was written off by most people, some friends telling others that my disease was not a big deal and I was just being dramatic and craving attention.
I became very isolated, partly due to the heartbreaking reaction of others to my diagnosis but mostly due to the nature of the treatment. The protocol to treat CLD is lengthy and actually makes you much worse before you get better. My life was filled with complete darkness and depression, I could barely get out of bed to go to the bathroom. I would have to get back in bed to rest after a simple act of brushing my teeth or washing my face. I was in constant, agonizing pain. I would have seizures, pass kidney stones, and go in and out of consciousness all in one day.
This time was truly the darkest days of my life, I was hopeless. My brain was so foggy that I could not think straight, much less walk straight. My short-term memory was shot. I was beginning to wonder if I was going crazy. I was desperate and had to quit treatment for a few months, which was devastating given the length of time it was going to take to go into remission to begin with. It turned out my body could not handle this phase of treatment and I was having severe reactions. I was having a massive healing crisis; the antibiotics were killing off the spirochetes faster than my body could detoxify them. The kill-off produces toxins to be released into your system, and if the amount of toxins gets too high, it can wreak havoc on your body and even lead to death.
I slowly came back into the light after putting the treatment on hold. I started seeing an Ayuverdic specialist here in Homewood, Denise at Blissful Heights. I got my body back in balance and began treatment again and this time I had learned my lesson. I became obsessive about detoxing and still consider it my full time job, as it requires total commitment.
May rolled around and I was handling my treatment much better. It also happened to be Lyme Disease Awareness Month. I was re-watching a speech by Real Housewives of Beverly Hills star and former model Yolanda Foster regarding her battle with Lyme, crying with frustration that there are so few advocates for Lyme Disease that have celebrity as a platform (most celebrities with Lyme Disease do not go public with their battle). Then it hit me: instead of continuing to hide this disease from others by virtually disappearing from friends and family, I needed to be an advocate. I did not have a platform to be heard by millions like Yolanda, but I do have facebook and a blog and I, too, can reach people.
I started May off by posting educational information for Lyme Awareness on facebook—tired of my self-imposed silence and wanting to break free of my fear. The love and support I received was completely overwhelming. The South is severely lacking in Lyme advocates, so I was emboldened by the initial response of support to try and fill that roll and joined an amazing organization called the Alabama Lyme Disease Association (https://www.facebook.com/AlabamaLymeDisease). It started off with a few facebook posts and then my blog, which, to my dismay, has been incredibly successful and read by over 12,000 people around the world.
I would be selfish not to speak for those infected who do not have a voice. I have met so many Alabamians who have CLD but cannot afford the treatment. The most important thing right now is for people to learn about Lyme disease - to know that over 300,000 people become infected on a yearly basis, and to know that for the most part the government is ignoring it and insurance companies will not touch it since the treatment costs are so significant.
The treatment for CLD is aggressive and lengthy. I am beyond blessed to go to the leading Lyme Literate Medical Doctor, who was formerly one of the top AIDS researchers, so he has a very strong background in Infectious Disease. Treatment makes you significantly more sick before you get better. It is a grueling journey—one that has left me bedridden, unable to think or speak at times, and in a pit of total darkness. Because of how torturous treatment is, along with other factors, such as isolation, the suicide rate in CLD patients is extremely high. Most do not commit suicide because they are depressed—but because it is the only way to escape the physical pain and mental anguish you experience.
Invisible illnesses are hard to understand, and most people's natural reaction is to back away from the unknown. I pray that the people who read this that have their health will gain a better understanding of how to 'handle' it when a person in their life becomes sick...not necessarily with Lyme but with any other disease that you cannot see with the naked eye.
Living with Lyme has taught me so many lessons, and already I am a happier person because of it. I have found a closeness with God that I didn't realize was possible and have completely let go of all my fears. One day a few months ago, I was suffering from a rather gloomy outlook and it seemed as if my treatment would go on forever and it would never end. I was in a very child-like state--feeling so sorry for myself and thinking over and over again that I will never beat this--and while in this state I had an uncontrollable yearning to be held by my father like when I was a child and he would tell me "everything will be okay"...and he seemingly always made things better. I always felt safest that way and when you are a child you truly believe with all of your heart that your parents can indeed make everything better.
I remember lying on the bathroom floor in a ball of pain and crying, rocking back and forth, and screaming "Why God? Why!! I cannot do this. I just need someone to hold me and tell me I will be okay." I suddenly realized that the yearning I felt was not for my father on earth, but for my Heavenly Father. At that moment I felt a tremendous weight lifted off my shoulders and a warmth that calmed me down enough to fall asleep. The next morning I woke up and felt something new deep down in my Soul. It was not a belief that I will get better and I will heal, it was a profound and factual knowledge that I WILL conquer this disease, without a doubt.
I have always felt close to God and prayed in the morning, before meals, and at night. But on that day I felt lifted up so high as that I could see everything from God's perspective. I started to learn how to live with him by my side at all times and share with him everything I do and everything I am going through. My yoga and meditation practices even became spiritual, a time to calm my mind and just listen, and to take the time to thank Him for his healing Grace.
The treatment had caused my small frame to balloon up to 145 lbs, and I could barely look at myself in the mirror. But once I started living my life close to God, the image in the mirror changed. This diseased body of mine is just something my Soul is living in while I am on Earth. My soul is not sick, just the capsule that carries it. I am not saying that I was able to get over my pride overnight, but it did make it much easier to handle. By the way, to show you how crazy the treatment can be, I lost all of the weight in a few months by switching antibiotics and now have lost too much weight (I'm fighting to stay over 100 lbs and lack any muscle tone at all). Random weight gain and weight loss occurs in a lot of Lyme patients, as does severe muscle atrophy.
Before my body put on the brakes and completely quit on me, I was working 60-70 hour work weeks working for my father. He in no way required this of me and even told me to stop working so much, but my overly-compulsive Type A personality would not allow it.
Fast-forward to now: after a lot of hard work and yoga, yoga therapy, ayuverdic therapy, meditation, breathing exercises with a biofeedback machine, etc I have learned to control the beastly Type A overachieving personality and become closer to Type B. This is not something I am doing so that I can get better and get back to work and my old ways, it has been a complete lifestyle change. I have learned to love myself exactly as I am and to not judge my body on what it is going through. I have a greater appreciation of God's creation and even see colors more vividly. I feel so at peace in nature and have a peaceful mind, something that I have never had before. Instead of judging my self-worth based on my accomplishments (I was named Birmingham's top Young Professional and received several community service awards, including MyScoop’s Birmingham’s Top Belle), I have learned to love myself as God made me, not because of what I have achieved but because of the person God created me to be.
I have made a major lifestyle change that will remain with me the rest of my life. I am still the same person--a little too competitive and obsessive at times--but God has found a light in the darkness of this disease. I will never be the same as I was before and thus my life will be so much more fulfilling. This curse has become my blessing and will change the course of my life forever.
God bless you all and please join me in praying for all those infected with Lyme...send them love, support, and healing. A patient's mental state has a lot to do with the success or failure of fighting a disease, so show love and kindness to all you know who are ill. After all, happiness and companionship are far stronger than any painkiller.
Thank you to all of you who have always supported me—my family, my amazing boyfriend and my friends. I am blessed to have such a wonderful group of people who have never given up on me.
Every few years I would get a handful of diagnoses and begin treatment, but I was still sick despite my multiple doctors’ best efforts. Finally, in June of 2012, I was diagnosed in DC by one of the leading Lyme Literate Medical Doctors (LLMD), as having Late Stage Chronic Lyme Disease and several co-infections, including Babesiosis and Bartonella.
All of the diseases I had been diagnosed with through-out my lifetime were caused by Chronic Late Stage Lyme Disease as well as it’s co-infections, which are often worse than the Lyme itself. I, along with most Chronic Lyme patients, have several co-infections, but I will only cover the two worst ones I have. The first, and most difficult to treat is Babesiosis, a malaria-like parasitic disease caused by infection with Babesia, a genus of protozoal piroplasms (called “Malaria at it’s worst”). The second major co-infection I have is Bartonella. “Bartonella henselae is the causative agent of the notorious cat-scratch fever, endocarditis, and several other serious diseases in humans. It is not uncommon for patients to contract encephalopathy.”http://www.envita.com/lyme-disease/chronic-lyme-disease-coinfection-bartonella-causing-more-chronic-fatigue-problems#sthash.054HxyVR.dpuf
This diagnosis of Late Stage Chronic Lyme Disease (CLD) was like an umbrella--it covered every single illness I had ever been diagnosed with (see list below), because those illnesses are all symptoms of CLD. CLD is known as "The Great Imitator" for mimicking over 300 diseases such as MS, ALS, Parkinson's, Alzheimer's and Rheumatoid Arthritis, to name a few. My sister, Julia, was diagnosed with Juvenile Rheumatoid Arthritis at the age of 2 and we have recently learned that her JRA was actually caused by CLD that we both contracted in vitro. Click here to read her story:http://whenlifehandsyoulyme.blogspot.com/2013/08/guest-blog-lifelong-battle-with-jra-lyme.html
Here is a list of the diagnoses I received over my lifetime that were caused by CLD:
Malignant Brain Tumor
Mononeuritis Multiplex
Neuroborreliosis
Fibromyalgia
Idiopathic Hypersomnia
Mitral Valve Prolapse
Dysautonomia
Hypothyroidism/Hyperthyroidism
Post Traumatic Stress Disorder
Fibrocystic Breast Disorder
Complex Ovarian Cysts
Endometriosis
2 Abdominal Hernias
Vestibulitis
Interstitial Cystitis
Pelvic Floor Muscle Dysfunction (High Tone, Rated: Severe)
Pelvic Congestion
Tumors in Pelvic Floor
Appendix Stones
Kidney Stones
Arthritis: Left SI joint and Left Knee
Narrowing of both SI Joints
Abnormality in Cervical Spine
Coccydynia
Anxiety/Depression
Non-Epileptic Seizures
Pain Induced Panic Attacks
Severe Muscle Spasms
Acute Paralysis
Speech Paralysis
Symptoms of Multiple Sclerosis
Symptoms of Parkinson’s Disease
Relieved that I now had a reason to why I was not getting any better from previous years of treatment and all three pelvic surgeries, I began telling my local doctors the 'good news.' For me, being diagnosed with Lyme, something treatable, was a blessing. I had been facing a lifetime of sickness with doctors who had either given up on me or told me we had tried everything possible with no success. We all thought I would be severely sick the rest of my life and never truly get any answers. I was advised to have my eggs frozen, as my reproductive system would eventually fail. I knew that treatment for CLD would be grueling, but it was much more favorable to go through years of torturous treatment, put it into remission, and move on with my life than to live a life of chronic illness, wondering why I would never get well.
I quickly learned that CLD carries many negative connotations and many are extremely skeptical. I had some doctors tell me that it does not exist, others that it does not exist in the South (although research has proven otherwise). I was written off by most people, some friends telling others that my disease was not a big deal and I was just being dramatic and craving attention.
I became very isolated, partly due to the heartbreaking reaction of others to my diagnosis but mostly due to the nature of the treatment. The protocol to treat CLD is lengthy and actually makes you much worse before you get better. My life was filled with complete darkness and depression, I could barely get out of bed to go to the bathroom. I would have to get back in bed to rest after a simple act of brushing my teeth or washing my face. I was in constant, agonizing pain. I would have seizures, pass kidney stones, and go in and out of consciousness all in one day.
This time was truly the darkest days of my life, I was hopeless. My brain was so foggy that I could not think straight, much less walk straight. My short-term memory was shot. I was beginning to wonder if I was going crazy. I was desperate and had to quit treatment for a few months, which was devastating given the length of time it was going to take to go into remission to begin with. It turned out my body could not handle this phase of treatment and I was having severe reactions. I was having a massive healing crisis; the antibiotics were killing off the spirochetes faster than my body could detoxify them. The kill-off produces toxins to be released into your system, and if the amount of toxins gets too high, it can wreak havoc on your body and even lead to death.
I slowly came back into the light after putting the treatment on hold. I started seeing an Ayuverdic specialist here in Homewood, Denise at Blissful Heights. I got my body back in balance and began treatment again and this time I had learned my lesson. I became obsessive about detoxing and still consider it my full time job, as it requires total commitment.
May rolled around and I was handling my treatment much better. It also happened to be Lyme Disease Awareness Month. I was re-watching a speech by Real Housewives of Beverly Hills star and former model Yolanda Foster regarding her battle with Lyme, crying with frustration that there are so few advocates for Lyme Disease that have celebrity as a platform (most celebrities with Lyme Disease do not go public with their battle). Then it hit me: instead of continuing to hide this disease from others by virtually disappearing from friends and family, I needed to be an advocate. I did not have a platform to be heard by millions like Yolanda, but I do have facebook and a blog and I, too, can reach people.
I started May off by posting educational information for Lyme Awareness on facebook—tired of my self-imposed silence and wanting to break free of my fear. The love and support I received was completely overwhelming. The South is severely lacking in Lyme advocates, so I was emboldened by the initial response of support to try and fill that roll and joined an amazing organization called the Alabama Lyme Disease Association (https://www.facebook.com/AlabamaLymeDisease). It started off with a few facebook posts and then my blog, which, to my dismay, has been incredibly successful and read by over 12,000 people around the world.
I would be selfish not to speak for those infected who do not have a voice. I have met so many Alabamians who have CLD but cannot afford the treatment. The most important thing right now is for people to learn about Lyme disease - to know that over 300,000 people become infected on a yearly basis, and to know that for the most part the government is ignoring it and insurance companies will not touch it since the treatment costs are so significant.
The treatment for CLD is aggressive and lengthy. I am beyond blessed to go to the leading Lyme Literate Medical Doctor, who was formerly one of the top AIDS researchers, so he has a very strong background in Infectious Disease. Treatment makes you significantly more sick before you get better. It is a grueling journey—one that has left me bedridden, unable to think or speak at times, and in a pit of total darkness. Because of how torturous treatment is, along with other factors, such as isolation, the suicide rate in CLD patients is extremely high. Most do not commit suicide because they are depressed—but because it is the only way to escape the physical pain and mental anguish you experience.
Invisible illnesses are hard to understand, and most people's natural reaction is to back away from the unknown. I pray that the people who read this that have their health will gain a better understanding of how to 'handle' it when a person in their life becomes sick...not necessarily with Lyme but with any other disease that you cannot see with the naked eye.
Living with Lyme has taught me so many lessons, and already I am a happier person because of it. I have found a closeness with God that I didn't realize was possible and have completely let go of all my fears. One day a few months ago, I was suffering from a rather gloomy outlook and it seemed as if my treatment would go on forever and it would never end. I was in a very child-like state--feeling so sorry for myself and thinking over and over again that I will never beat this--and while in this state I had an uncontrollable yearning to be held by my father like when I was a child and he would tell me "everything will be okay"...and he seemingly always made things better. I always felt safest that way and when you are a child you truly believe with all of your heart that your parents can indeed make everything better.
I remember lying on the bathroom floor in a ball of pain and crying, rocking back and forth, and screaming "Why God? Why!! I cannot do this. I just need someone to hold me and tell me I will be okay." I suddenly realized that the yearning I felt was not for my father on earth, but for my Heavenly Father. At that moment I felt a tremendous weight lifted off my shoulders and a warmth that calmed me down enough to fall asleep. The next morning I woke up and felt something new deep down in my Soul. It was not a belief that I will get better and I will heal, it was a profound and factual knowledge that I WILL conquer this disease, without a doubt.
I have always felt close to God and prayed in the morning, before meals, and at night. But on that day I felt lifted up so high as that I could see everything from God's perspective. I started to learn how to live with him by my side at all times and share with him everything I do and everything I am going through. My yoga and meditation practices even became spiritual, a time to calm my mind and just listen, and to take the time to thank Him for his healing Grace.
The treatment had caused my small frame to balloon up to 145 lbs, and I could barely look at myself in the mirror. But once I started living my life close to God, the image in the mirror changed. This diseased body of mine is just something my Soul is living in while I am on Earth. My soul is not sick, just the capsule that carries it. I am not saying that I was able to get over my pride overnight, but it did make it much easier to handle. By the way, to show you how crazy the treatment can be, I lost all of the weight in a few months by switching antibiotics and now have lost too much weight (I'm fighting to stay over 100 lbs and lack any muscle tone at all). Random weight gain and weight loss occurs in a lot of Lyme patients, as does severe muscle atrophy.
Before my body put on the brakes and completely quit on me, I was working 60-70 hour work weeks working for my father. He in no way required this of me and even told me to stop working so much, but my overly-compulsive Type A personality would not allow it.
Fast-forward to now: after a lot of hard work and yoga, yoga therapy, ayuverdic therapy, meditation, breathing exercises with a biofeedback machine, etc I have learned to control the beastly Type A overachieving personality and become closer to Type B. This is not something I am doing so that I can get better and get back to work and my old ways, it has been a complete lifestyle change. I have learned to love myself exactly as I am and to not judge my body on what it is going through. I have a greater appreciation of God's creation and even see colors more vividly. I feel so at peace in nature and have a peaceful mind, something that I have never had before. Instead of judging my self-worth based on my accomplishments (I was named Birmingham's top Young Professional and received several community service awards, including MyScoop’s Birmingham’s Top Belle), I have learned to love myself as God made me, not because of what I have achieved but because of the person God created me to be.
I have made a major lifestyle change that will remain with me the rest of my life. I am still the same person--a little too competitive and obsessive at times--but God has found a light in the darkness of this disease. I will never be the same as I was before and thus my life will be so much more fulfilling. This curse has become my blessing and will change the course of my life forever.
God bless you all and please join me in praying for all those infected with Lyme...send them love, support, and healing. A patient's mental state has a lot to do with the success or failure of fighting a disease, so show love and kindness to all you know who are ill. After all, happiness and companionship are far stronger than any painkiller.
Thank you to all of you who have always supported me—my family, my amazing boyfriend and my friends. I am blessed to have such a wonderful group of people who have never given up on me.
May 2015 Update: I was hospitalized last Fall and had to move back in with my parents. My outcome was looking bleak--I had toxic hepatitis from treatment and the doctor told my now-fiance had we waited any longer to come in I could have suffered complete brain damage or even loss of life. I started to wonder if the fight was over and continued to pray to God for miraculous healing. By Christmas of 2014 I was able to function more normally than I can ever remember.
Chronic Lyme patients with co-infections do not suddenly get better--it is a very slow progress. God performed another miracle on Christmas and started giving me my life back. My specialists were baffled at this sudden and extreme improvement and instead of moving on to remission treatment they chose to forgo any more treatment and told me if I continued my healthy lifestyle and holistic treatments that I could put myself into remission. God went above and beyond again--I had been praying for remission treatment in lieu of the intense regimen I had been on. But our God has no limitations and he showed me I was not dreaming big enough.
I still do not function normally but most days people who do not know me cannot tell I'm sick--and most days I do not look sick. I've gained 15-20 lbs back and no longer have that yellow/gray palor to my skin. I still have flare-ups but I no longer feel tortured. I go back to my specialist in DC within the next month and would appreciate prayers that I am close to or have found remission. It will still take a year at least for my body to heal from the trauma but I will gladly take that on.
I'm getting married to the love of my life in Alys Beach (in Santa Rosa Beach, FL) in September and I have been able to start a fashion blog with a new friend who is so amazingly supportive of me. Our blog, The Southern Atelier, has brought so much joy into my life. And Rachel and I are using it as a platform to raise awareness and funds for Lyme Disease in the South. I'm also excited about moving from Birmingham, AL to Fairhope, AL and for the ability to do so.
I will leave you with one last image. This is when I got home from the hospital in late October and the picture on the right is of me and my fiancé a week before Christmas. Much love to you all. If either picture is not loading please click the small square box.
Here I am doing the #lymediseasechallenge. Please join me and #takeabiteoutoflymedisease. Just post it on your social media using those two hashtags.
For Additional Information:
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http://www.tiredoflyme.com/
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