You find Lyme Aid: Help from God, friends, family, doctors, non-traditional medicine & others in your same situation. You do everything you can to fight and survive-you ready yourself for a physical, emotional & spiritual battle that occurs within your body that can be dark, isolating & agonizing at times. However, fighting Lyme will leave you with deeper spiritual companionship, a stronger connection to yourself & others & a greater appreciation of God's creation.
Thursday, February 27, 2014
My Personal Lyme Story: The Fight for my Life
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.
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.