- L
- K
I want to start this by saying my sister would never ask for money. I know everyone on here says that and that's the great thing about this site...there's so many people willing to help those who don't know how to ask for it. Cait is my 25 year old baby sister. She is a musician, an artist, and now after a long hard year - a Paul Mitchell trained hair stylist. She won Beacon (a Professional Beauty Association competition) but didn't travel to the award education week in Las Vegas because she knew she wouldn't feel good...and she also knew if she had $2000 to spend on a trip to Vegas (even for her career) that she would rather spend it on a doctor visit. She is graduating in September 2016 from an amazing Paul Mitchell Partner School and is facing the reality that she may not be able to hold down a job due to her illness. Cait has been diagnosed with Lyme Disease. She has seen multiple types of practitioners, she has been up and down, back and forth. Her symptoms never cease, moreover she just deals with them in order to live a "normal" life. But sometimes this means laying in bed all day because her 25 year old body hurts too bad to get up. At a recent ER visit, she had a doctor say to her "I had a friend with Lyme... I'm so sorry I can't help you." She has not sought treatment from elite Lyme centers because she knows it means $$$. As a student, she obviously does not have a life's savings to spend on medical care. After a 90 minute conversation with my sister tonight, I promised her we would be proactive and find her the right care. She is going to apply to research studies at NIH and Johns Hopkins. There is also a Lyme Specialty clinic in DC where we can get her in but the initial appointment is $800 - no insurance accepted. Any money earned on this page will be put towards Caitlin's medical bills, prescriptions and supplements. Even though she didn't like the idea of a GoFundMe page, Cait agreed to write her story for me. And if you know Cait (who is an excellent writer), keeping this long story short was no easy task. Please read on to learn this story from Caitlin's perspective. And please help if you can, I am not giving up until my sister is confident she can physically get up and go to work everyday and have a wonderful career that she worked so hard for. I don't even know if $10,000 is enough money. Probably not, but it's where we will start...
--------------------------------
From Caitlin...
I don’t know exactly how to describe the steady decay of what I used to call “my body”… This may be partly due to the fact that I haven’t been able to truly see it as mine for years now.
My name is Caitlin and this is not my first rodeo with Lyme Disease. I was first diagnosed at the age of 14 after returning home from science camp in the Chesapeake Bay area. That year (over a decade ago) I pulled what seemed like 20 ticks off of my body before camp came to a close. I had always been an adventurous, outdoors kind of girl and had been pulling ticks off my body since I was a young girl. I thought nothing of it… that is until the classic symptoms presented themselves within a week of being back at home. I had a fever, night sweats, aches and pain in my knees and elbows and a strange spotted rash all over my legs that itched so bad I wanted to rip my limbs off. So naturally, my mother took me to the nearest doctor and I was formally diagnosed after extensive bloodwork with Lyme Disease. I was prescribed two week of Doxycycline, no follow up appointment needed. I remember the doctor saying “she will be fine”. And despite the crippling nausea brought on by the antibiotics, I was seemingly better.
I can’t say too much of my teen years. They were a blur to me at times. But also, they seemed to be riddled with all sorts of troublesome health issues. I suffered mood swings, terrible anxiety and panic attacks that sometimes had me in the ER, continued joint pain and my back always seemed to be tighter than it should be for a sixteen year old. I suffered more kidney infections and passed more kidney stones than any teenager I knew. Nevertheless, I shifted to the mindset that these were all “normal pains” that everyone suffered on a daily basis. This, I believed with my whole heart.
Flash forward to the summer before my 23rd birthday. It's 2013 and I was working my job as a cashier at an organic food market and felt something strange on my arm. I looked down at it quickly, (as I was engaged in conversation and didn’t want to seem distracted from the customer) and saw a tiny black dot smaller than the freckles on my arm. I thought I had scratched myself too hard or picked at a scab and was now bleeding. I scratched at it to see if it would go away--- it did. It was gone. A few days later I noticed a tiny red rash surrounding it. It was nothing like the standard “bullseye rash” I had been trained to watch out for, so I thought “oh it’s just a spider bite”… So did the doctor I went to see. The next eight months of my life (before diagnosis) would be the beginning of something I could never prepare myself for.
I once woke in the middle of the night to a stinging, surging pain that ran from my forearms into my fingertips. This pain not only woke me up, but also caused my arms and hands to go numb. I know that sounds strange and seems impossible… How can one feel pain and also be numb at the same time? Your guess is as good as mine and I still have these sensations three years (and several treatments) later.
The symptoms only got worse as I searched for answers. Countless doctor visits. Confusion. Sadness. Anger. My symptoms over the past three years have been as such (and I will probably forget half of them as I try to type them):
-Numbness in limbs-crippling back pain-fatigue-mood swings and rage bouts-hot and cold spells-night sweats-fevers-tingling and a skin crawling feeling all the time-cognitive dysfunction-brain fog- insomnia- rashes- various infections- panic attacks- vision impairment-high blood pressure-kidney stones- tremors-twitches-muscles spasms- facial paralysis/numbness- vertigo- pleurisy- headaches- vitamin deficiencies- and most recently my bloodwork showed a concerning large amount of viral antibodies that indicated my body is fighting more than just this bacterial infection. I was also diagnosed with Bartonella (otherwise known as Cat Scratch Fever) that gave me a rash that itched and looked like I had been attacked by a tiger. Bartonella also impairs and damages the nervous system and cognitive functions, among a whole other long list of symptoms.
My white and red blood cell counts are shockingly low and at the risk of sounding dramatic… I am just plain scared at this point. Since I became so ill I’ve taken better care of my body than I ever have before and it seems that nothing is helping. After trying all the methods of healing I could without seeing a Lyme Literate Doctor (LLMD) and taking countless oral antibiotics and herbal remedies with minor improvement that eventually leaves me spiraling back into poor health whenever I try to go off these regiments… I have to put my pride aside and ask for help. Because in the midst of falling so ill, I found a career I am passionate about and I cannot just let myself be eaten alive by this illness. This bacteria, these spirochetes, this INTERNATIONAL EPIDEMIC. I will be 26 years old in October and I have dreams and aspirations like any young person would in their mid 20s… I don’t want to watch my life go by. I don’t want to feel like I’m literally one foot in the grave every moment of every day. I want to be present, get married, have a body that could support a child if the time comes. I want a fulfilling career and if there is a chance I can live without wondering “will I be able to do anything today?”, I want that life. I have forgotten what it was like to live without physical pain.
I have been an advocate for awareness and have been continually trying to promote positivity throughout this journey... Many are unaware that we live in a world that will not acknowledge this debilitating health issue, making it so that many of us must pour our words onto a website page and ask for money… This disease is killing people because they cannot afford to pay out of pocket the thousands of dollars it costs for proper treatment. Until the CDC and the insurance companies decide that our lives are worth acknowledging and taking care of, all we have is the love and support of the people around us.
So much love and my highest regards,
Cait ❤
--------------------------------
From Caitlin...
I don’t know exactly how to describe the steady decay of what I used to call “my body”… This may be partly due to the fact that I haven’t been able to truly see it as mine for years now.
My name is Caitlin and this is not my first rodeo with Lyme Disease. I was first diagnosed at the age of 14 after returning home from science camp in the Chesapeake Bay area. That year (over a decade ago) I pulled what seemed like 20 ticks off of my body before camp came to a close. I had always been an adventurous, outdoors kind of girl and had been pulling ticks off my body since I was a young girl. I thought nothing of it… that is until the classic symptoms presented themselves within a week of being back at home. I had a fever, night sweats, aches and pain in my knees and elbows and a strange spotted rash all over my legs that itched so bad I wanted to rip my limbs off. So naturally, my mother took me to the nearest doctor and I was formally diagnosed after extensive bloodwork with Lyme Disease. I was prescribed two week of Doxycycline, no follow up appointment needed. I remember the doctor saying “she will be fine”. And despite the crippling nausea brought on by the antibiotics, I was seemingly better.
I can’t say too much of my teen years. They were a blur to me at times. But also, they seemed to be riddled with all sorts of troublesome health issues. I suffered mood swings, terrible anxiety and panic attacks that sometimes had me in the ER, continued joint pain and my back always seemed to be tighter than it should be for a sixteen year old. I suffered more kidney infections and passed more kidney stones than any teenager I knew. Nevertheless, I shifted to the mindset that these were all “normal pains” that everyone suffered on a daily basis. This, I believed with my whole heart.
Flash forward to the summer before my 23rd birthday. It's 2013 and I was working my job as a cashier at an organic food market and felt something strange on my arm. I looked down at it quickly, (as I was engaged in conversation and didn’t want to seem distracted from the customer) and saw a tiny black dot smaller than the freckles on my arm. I thought I had scratched myself too hard or picked at a scab and was now bleeding. I scratched at it to see if it would go away--- it did. It was gone. A few days later I noticed a tiny red rash surrounding it. It was nothing like the standard “bullseye rash” I had been trained to watch out for, so I thought “oh it’s just a spider bite”… So did the doctor I went to see. The next eight months of my life (before diagnosis) would be the beginning of something I could never prepare myself for.
I once woke in the middle of the night to a stinging, surging pain that ran from my forearms into my fingertips. This pain not only woke me up, but also caused my arms and hands to go numb. I know that sounds strange and seems impossible… How can one feel pain and also be numb at the same time? Your guess is as good as mine and I still have these sensations three years (and several treatments) later.
The symptoms only got worse as I searched for answers. Countless doctor visits. Confusion. Sadness. Anger. My symptoms over the past three years have been as such (and I will probably forget half of them as I try to type them):
-Numbness in limbs-crippling back pain-fatigue-mood swings and rage bouts-hot and cold spells-night sweats-fevers-tingling and a skin crawling feeling all the time-cognitive dysfunction-brain fog- insomnia- rashes- various infections- panic attacks- vision impairment-high blood pressure-kidney stones- tremors-twitches-muscles spasms- facial paralysis/numbness- vertigo- pleurisy- headaches- vitamin deficiencies- and most recently my bloodwork showed a concerning large amount of viral antibodies that indicated my body is fighting more than just this bacterial infection. I was also diagnosed with Bartonella (otherwise known as Cat Scratch Fever) that gave me a rash that itched and looked like I had been attacked by a tiger. Bartonella also impairs and damages the nervous system and cognitive functions, among a whole other long list of symptoms.
My white and red blood cell counts are shockingly low and at the risk of sounding dramatic… I am just plain scared at this point. Since I became so ill I’ve taken better care of my body than I ever have before and it seems that nothing is helping. After trying all the methods of healing I could without seeing a Lyme Literate Doctor (LLMD) and taking countless oral antibiotics and herbal remedies with minor improvement that eventually leaves me spiraling back into poor health whenever I try to go off these regiments… I have to put my pride aside and ask for help. Because in the midst of falling so ill, I found a career I am passionate about and I cannot just let myself be eaten alive by this illness. This bacteria, these spirochetes, this INTERNATIONAL EPIDEMIC. I will be 26 years old in October and I have dreams and aspirations like any young person would in their mid 20s… I don’t want to watch my life go by. I don’t want to feel like I’m literally one foot in the grave every moment of every day. I want to be present, get married, have a body that could support a child if the time comes. I want a fulfilling career and if there is a chance I can live without wondering “will I be able to do anything today?”, I want that life. I have forgotten what it was like to live without physical pain.
I have been an advocate for awareness and have been continually trying to promote positivity throughout this journey... Many are unaware that we live in a world that will not acknowledge this debilitating health issue, making it so that many of us must pour our words onto a website page and ask for money… This disease is killing people because they cannot afford to pay out of pocket the thousands of dollars it costs for proper treatment. Until the CDC and the insurance companies decide that our lives are worth acknowledging and taking care of, all we have is the love and support of the people around us.
So much love and my highest regards,
Cait ❤