Life On Hold

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.

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.

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:

http://whenlifehandsyoulyme.blogspot.com/
www.facebook.com/whenlifehandsyoulyme
www.facebook.com/alabamalymedisease
http://www.tiredoflyme.com/

Please follow The Southern Atelier on Facebook and Instagram! 

Learning to Love your 'New Life' as much as your 'Old Life': In an analogy about dogs

An Analogy of Your New Life--Dog lovers will enjoy this post!

Ice Hiking on a Glacier

Quick Background: Before I was diagnosed with Lyme, I was going to a pain clinic here in Birmingham. One of the requirements of being in the program was having to see one of their therapists once every six months (most likely to rule out drug-seeking behavior). I went to my first mandatory session and was amazed at how much he helped me in an hour. It was not like on TV where you lay on a couch and talk about your childhood feelings, it was more of a two way conversation. He taught me the way the body perceives pain, the science behind pain and how our brains and bodies react to it. I loved the idea of talk-therapy and learning more about why I reacted certain ways to pain, so I booked a session with him once a week for two months and then later every other week for a few more months. 

Kayaking in Costa Rica

One day I was explaining how I felt cheated by my disease and that I had lost my former self; my identity. He asked me what I considered to be my hobbies: sports, hiking, climbing, tennis, working out, doing anything adventurous and outdoors... He then asked what non-active hobbies I had. All I could come up with was, "Um, I like fashion. But I do not think shopping counts as a hobby." He quickly responded that no, shopping is not a hobby, and is not a healthy form of therapy, either.

Repelling down a Waterfall

 I had been so active my entire life. Instead of talking about something that frustrated me, my therapy was to work out so hard that I would almost pass out. I felt euphoric afterwards. I felt most at peace in nature and found things like climbing a mountain to be meditative. All of these joys in my life had been taken away from me from being sick and in constant pain. I was an adrenaline-junkie: ice climbing, skydiving, you name it, I loved doing it. My illness and pain had taken away all the things I was once so passionate about. I have posted pictures of some of my favorite adventures over the years so you will understand how utterly confused I was when he asked me what I enjoyed doing that was not active or adventurous.

Snowboarding

He advised that I needed to incorporate new, non-activity based hobbies into my life and I met him with a fair amount of resistance on this particular topic. He asked what non-active hobbies I could try...I told him all I could think of was reading and knitting as possible non-active hobbies (yes, I love to read but have no idea how to knit nor do I feel any draw to learn to...I was too busy feeling sorry for myself to think of anything else. I could not envision a non-active activity that would fulfill my competitive personality in any way). His answer to me accepting my new life came in the form of an analogy about dogs and pets.

Here was his analogy that he said applied to me and my new life, being that I am a dog lover. I will attempt to sum it up, but unfortunately the picture will not be painted as beautifully as he said it:

"So your family has had a dog for a long time. You love everything about the dog--its quirks, habits, the way it reacts when you walk through the door..." 

I immediately thought back to the beautiful fox-fire red lab we had when I was growing up, Savannah. She was so obsessed with playing fetch that she would scrape her nose on the concrete after hours of nudging sticks or tennis balls into the pool and jumping after them. 

Savannah on the jet ski with me

She would even jump off the diving board and swim to the very bottom of the pool when the sticks sank. She loved riding on the jet ski with me and was always happy. We all loved her so much--she was almost like a sibling to me-- and she unfortunately passed away after living a long and fulfilled life when I was in college. 

"Now think about how you mourned the loss of your dog. How you allowed yourself to cry and mourn this loss in your family." 

This was true. We all grieved the loss of Savannah. It was horribly painful and left me feeling hollow. She was the most amazing dog I had ever met, and I took this loss pretty hard along with the rest of my family.

Next, he said, "After some time, I imagine your family got another dog."

Puff loves to climb up trees
and walls in search of his nemesis: Squirrels

This was true. My sisters had each gotten toy poodles--Cocoa and Puff. 

He then asked me which dog I loved more. I told him I loved them the same amount, but in different ways. "So they were different, but you loved them equally anyway?" he asked.

Of course I did. The poodles are the most expressive dogs I have ever met. They are silly and hilarious and so sweet. One of them even sings. Puff's favorite songs involve trumpets and horns, or anything by The Who, and also the Law & Order theme song. He also sings a very mournful song to Taps. He is a very emotionally-in touch dog and lays on my stomach when it is hurting (he is like a little heater). On a side note, I will record him singing and attach it to this post in a few days.

Cocoa, the Princess

Cocoa is his best friend and in ways his polar-opposite. She can be very prissy and manipulative, but she does not mind getting muddy and running through the woods at the lake. She is sweet and girlie--and knows exactly what faces to make to get exactly what she wants. Her manipulation rarely fails.

I love Savannah the same amount that I love both Cocoa and Puff. They are all three so diverse, and I love them all for different reasons in different ways. It is true, Cocoa and Puff could never precisely replace Savannah, but I find their differences to be endearing and have formed another type of love for the poodles. If you measured this love with all three dogs, it would add up to exactly the same amount.

What his analogy proved was that your life will be different after an illness. You have to mourn the loss of your old life appropriately (go through every step of the grief process), but then move on and 'get a new dog'. Of course you will always love and never forget your old dog/your former life, but you WILL learn to love your new dog/your new life. And you will love them equally but for different reasons, although they may be very unalike from each other. 

His analogy was perfect. You do have to spend time to mourn the loss of your old self-- your previous identity prior to  you becoming sick. After you mourn for the appropriate time, you need to find a new identity; a new sense of self. In time, you will learn to love this new life just as much as your old way of life, even though they are very different from each other. Each has its own set of pros and cons, but you love both the same. 

So, following his advice, I did eventually get a "new dog." I was not fully convinced I would be as happy in this new life at first because it did not involve so many of the things that fulfilled me before I was too sick to do them. But in a short amount of time, I realized that he was right. I certainly do not love being sick, but I do enjoy my new, although different, life. And like he said, I love them just the same and am extremely happy with this new life I live. All though they are so comparatively opposite in many ways, my new life fulfills me just as much as my old life does. And the lessons that fighting an illness have taught me allow me to appreciate my new life even more.

To answer your question, I was able to think of non-extreme or super active things to do other than knitting (which I never took up). So...What are the hobbies in my new life?

Restorative Yoga--I cannot do the overtly physical kinds right now but restorative yoga is a wonderful mind/body healing practice. The high I get while doing so and carry throughout my day is wonderful. Yoga has also taught my naturally competitive self not to "judge my body" and to accept myself just the way I am. My first few weeks of classes I was looking over at everyone else, making sure I could go deeper into a pose than the person next to me and comparing myself to them. Then I realized that yoga is a deeply spiritual exercise. I now tune out everyone else in my class and just enjoy what I am able to do. Although my level of ability in yoga has decreased due to my illness, my love of it has increased. In my previous life I only enjoyed an activity if I was good at it, and I really loved it if I was one of the best. With restorative yoga, I lay in supported positions for long lengths of time focusing on my breathing. It certainly does not count as anything athletic-based, but I love it nonetheless. 

Mediation--Something I formerly scoffed at. I finally got into it when I saw the bio-feedback nurse at the pain clinic. They hooked me up to a monitor and there were different 'games' on the computer you would play. You had to control your breathing and heart beat through meditative practice to juggle these virtual balls on the computer screen. It would tell you to juggle them slowly and at a low level--so I would slow down my heart and breathing and the balls on the screen would react. Then it prompted me to juggle them higher and more quickly. So using my meditation methods I sped up my heart rate and was able to successfully complete the task. I then realized how I felt afterwards--my levels of pain had gone down. My meditation has increased with tremendous strides from that day years ago, but it took me playing a game to realize how helpful it can be.

Gardening--I would say the balcony at my condo screams "a crazy cat lady lives here!" There is hardly any room to sit or stand, even though the balcony is quite large. I have it filled with planters and pots of all sizes. I have flowers and herbs. I even managed to grow lemons and blueberries last year (although the lemons never got bigger than the blueberries). I love having access to the herbs when I am cooking. So many of them are detoxing and healing, and picking them and using them fresh adds a little something extra to my meal.

Blogging--Its my form of journaling. I was previously a VERY private person and never shared my feelings with anyone. Now I am an open book. It is so cathartic for me just to get my feelings 'out there'....and even more cathartic when I get wonderful responses from people who can relate to what I am going through. Knowing that by expressing my feelings I am also helping other people makes me feel like I have purpose again. My previous life was spent with walls around my heart, but in this life I am letting the walls down and enjoying life with an open heart. By the way, if you ever want to share your story just send me a message. I love guest bloggers!

Lyme Advocacy--This has become something that I really enjoy. Spreading awareness about Lyme Disease, which so many now nothing about. I like to think I may even save people from going through this torturous disease with my posts on prevention and the necessary steps to take after a bite. I am also on a fundraising committee that is about to get geared up. We will be raising money for the Alabama Lyme Disease Association. 

I also love all the friends that I have made via my advocacy efforts. I found an amazing support group and feel that I am not alone. I am so close to all my fellow lymies--we all share a warriors mentality but have open hearts and treat each other with the utmost respect. I have had the deepest conversations of my life with some of my new found Lyme friends. You all know who you are. God bless you and thank you for showing me so much love and giving me so much joy. You have been an incredibly integral part of my healing process. 

Lifestyle Change--Eating clean and living as healthy a lifestyle as possible takes a lot of work. I have come to love the life I live now. I use my food as medicine. My body is my temple and I fuel it with fresh, organic food that makes me feel good after eating. I harness my overly Type A personality and live a more laid-back life. I do not let myself get stressed or worked up by imperfections that formerly drove me crazy with worry. I enjoy the little things more--colors are more vibrant, sunsets are more beautiful. My old life was too busy for me to slow down and enjoy Gods creation. I live my life side by side with God and rejoice in his Creation and the blessings he has bestowed upon me after I was willing to give a new life a try. 

Babesia Update: Great News

BABESIOSIS UPDATE:

I left you on my last Babesia post having just started my first week of treatment. And I was herxing terribly and felt there was no escape from the Hell of the antibiotic regimen and anti-malarial protocol I had just started. 

After rallying I decided I was going to do everything in my control to increase my quality of life. After taking my detox efforts to an entirely new level (I will write a future post about my "Detox Box"), I started handling the Babesia treatment much better. I made it my 24/7 job to be detoxing and taking care of my body at all times. I previously thought I was doing all that I could--but I even took that up to the next level. Big Time. 

This renewed determination and my new best friend, my detox box, paid off! Exactly two months into my fairly aggressive antibiotic/anti-malarial treatment, I returned to my LLMD for a check-up on my progress. I was carefully optimistic...my detox work had lead me to only "herx" during my "on" weeks of treatment. I was still having terribly bad days, but they were occurring less often. I was having more "good" days (relatively speaking) more often that ever. 

I even had the biggest blessing occur around the 4th of July. I had TEN days in a row where I felt well for the most part of each day. And it was not like I was in bed like usual. I went to the lake for three days and then to the beach for seven. I rode the stand-up jet ski for the first time in four years (if you have never ridden one of these it is the most intense workout. Many people can not even get up on it). My body felt like jello for days afterwards, but it was well worth the reward of being able to take another small part of my life back. Piece by piece, I am taking it back. 

I then headed to Seagrove, FL with my boyfriend some of our friends. I continued to have full, active days (if you have Lyme, you count laying on the beach as a high level of activity). I even played bachhi ball most days, and although my former extremely athletic (and overly competitive) and coordinated self came in last place in each game, I did not even care. Just participating was worth it and so much fun. This was the first time that I actually did not care if I won or not. My happiness and joy did not come from the results of the competition, it came from the pure act of playing in itself. There were even two of my boyfriend's friends down there that I hardly ever see and were not aware that I am sick. We hung out with them and they never knew (until the last night when we were at their house and I had a pretty bad seizure...minor setback). 

I felt more like a normal person than I have since I was a child. I still had to stay in sometimes and take a few naps each day, but I did not feel like I was missing out on anything. I even allowed myself to cheat on my super-strict diet (my "cheating" is what most people consider healthy, but still) and even allowed myself some celebratory champagne at dinner. To feel and appear as a 'normal' person would was one of the best blessings I have received. 

I did not have to spend hours getting ready and putting on makeup to cover the green pallor of my face or the brown, sunk in circles under my eyes. I did not have to obsess about making sure I had backup medication on me at all times in case of a flare up or episode. I did not have to fake a smile and try to hide all of the pain inside of me. For those ten days, I was free. And those were the best ten days of my life. I have been fortunate to travel around the world and vacation in some of the most beautiful locals, but to this day that trip to the charming town of Seagrove, FL is the best vacation I have ever been on. 

To feel that inner peace and 'normalcy' (which made me feel high I was so full of endorphins) was God's way of giving me a sneak peak into what the rest of my life will be like. Yes, this journey has been Hell. Yes, I have had many dark moments, lasting months. Yes, this has been the hardest battle of my life and the most mental, physical and spiritual pain I have ever suffered. But I am enduring. I am fighting. And finally, I am starting to win. 

I got to my doctors appointment and they were beyond thrilled at my progress. So much so that the bigwig specialist that runs the clinic that I rarely see (he spends a good deal of time in research now and mostly sees the most severe cases only) came in to see for himself how much I had improved in so little time. The initial Babesia treatment was planned to last eight months. They agreed that my new Babesia treatment estimate will only be four more months at the most, but most likely only two more months. At the least I will be cutting 25% of my Babesia treatment out, and and most I will only have to spend 50% of the initial suggested treatment time. 

Babesia seems to be one of the harder co-infections to get rid of, or so I am told, so I was thrilled with the news. My next treatment will be most likely a six month round of Bartonella protocol followed by a year of maintenance antibiotics to lessen my chances of relapse. My doctors told me I was "WAY over the hump," so naturally I was elated. So much so that I was high for the next few days, floating on cloud nine. They said a little after Christmas, or even before, I will be feeling 85-90% better. This is nothing short of a miracle. 

To add to this miraculous news-induced high, I went to my pelvic pain specialist the next day. He is absolutely my favorite doctor. I have been going to his clinic for almost ten years. His mentor was the first to actually believe that I was sick and diagnose me with all of my pelvic disorders. The second my pelvic pain doctor walked into the room his eyes lit up and welled up with tears. He gave me a hug. He is a very religious man and we speak freely about the impact of God and Christ on our lives, so he praised Jesus with me. Before even looking at my chart...just looking in my eyes, he could tell I was improving. 

Click here to read more in-depth with my pelvic pain struggles (coming soon).

My pelvic pain specialist was amazed at how well I was doing. I was going downhill very rapidly until I started Lyme treatment (which obviously made my downhill slide plummet straight down for a while), but now my pelvic illnesses are starting to heal. Almost a year ago I was able to get off the medicine for my Interstitial Cystitis, something I thought I would take the rest of my life. 

My Pelvic Pain doctor said "Sarah, not only are you walking proof that Lyme exists, but I want to send some of my patients who are in the same boat as you are in to your Lyme doctor."

Following a doctor in Alabama speak openly about Lyme and how treatment has healed me combined with two days of doctors telling me how miraculous my healing has been lately, I was so elated. I eventually crashed and felt incredibly sick for a few weeks, but it was just because my body was producing so much adrenaline (it is currently unable to regulate this) because I was SO happy. But even the crash can't keep me down. 

I am looking Babesia in the face and letting it know that it cannot beat me. Yes, it may pin me down on more occasions than not, but I will never let it keep me there. I will always get back up. And I will conquer it. Soon.

As always, click HERE to follow When Life Hands you Lyme on Facebook. Also click HERE to join the Alabama Lyme Disease Association for additional information on Lyme, co-infections, and Lyme in the South. You can also check them out on our new and improving Web site, alabamalymedisease.org.

How to Help a Lymie Out

My last post on Isolation briefly touched on the topic of how it is difficult to help someone who has Lyme Disease. This post will include a few tips on how to help out a Lymie along with listing and explaining the best presents I have received throughout this journey to wellness. This blog is written from my personal point of view of going through Lyme myself and watching my sister and father battle it, too. If your friend has Lyme, talk to them about this, their preferences may be different than my own observations. One of my favorite Lyme sites has a great article, "So You Know Someone With Lyme Disease--A Guide To Understanding Their Struggle,"that can help you understand how helping someone with Lyme can be difficult.

Tips to Help Loved Ones Dealing With Lyme Disease:

1. Try to understand, but know that you cannot. Lyme disease differs vastly from one patient to another, so methods of helping Lymies vary as much as the disease does itself. Be patient and kind. Let them know that you are there for them. Show them unconditional love and let them know that you will not allow this disease to change your relationship, unless to strengthen your bond. Do not tell them, "Well, you don't look sick" or try to cheer them up by asking, "Are you going back to work soon?"

2. Believe them. Most Lyme patients have been told everything negative about their disease from doctors, family, the government, insurance, and friends. Some common themes: your disease is not real, it is all in your head, you are depressed, you need to get over it, Lyme does not exist in the South, you need to tough it out, if you just pushed through this you would feel better..., etc. Just letting them know that you believe and support their diagnosis and have their back will do wonders. Also, if you feel so inclined, feel free to put anyone in their place for talking badly about your friend being sick. I know from personal experience that hearing that your 'friends' are telling your other friends that you are not really sick is an incredibly scaring experience that is Hell to go through. See my previous blog, My Private Struggle, for a little more insight into the story.

3. Spend a few minutes to research their disease. Their is an overwhelming amount of information on Chronic Lyme Disease out there, but do not let that stop you. Focus on symptoms of chronic lyme, learn what a "herx" (Jarisch-Herxheimer Reaction) is, learn about the lyme diet (gluten-free, sugar-free, anti-inflammatory, etc) and simple home remedies that can make the patient more comfortable. Just learning the Lyme lingo will show how much you care. Do not know where to start? Join informative facebook pages like Alabama Lyme Disease and When Life Hands You Lyme. A great place to start out for simple and informative research is one of my favorite lyme sites, Tired of Lyme (tiredoflyme.com). It is not overly "medical" and has articles that are short and easy to read. It will give you a much better understanding of this disease, from all angles.

4. Send them uplifting messages, bible verses, or words of encouragement. This can be done quickly on facebook or email. Or you can text it to the Lymie. I especially loved the ones that were mailed to me...I tape them on my mirrors and other prominent areas in my home. That way I am surrounded by positivity at all times and reminded that this disease is not going to isolate me. It reminds me that I have people cheering for me and supporting me through this journey. Here is a post with some of the uplifting messages I have received (click here).

5. Do not give up on them. You will probably ask your Lymie friend or relative to go grab a drink, get lunch, or even get coffee/tea. They may say "no" every time you ask, even if you are persistent. But do not stop asking. Instead, tailor your questions to suit the Lymie better. Ask if you can bring by some herbal tea for us to share. Or bring over dinner (gluten-free, please!) and a movie. Let them know you are planning on coming over in your pajamas. We have a lot of pride--I often turn people down from visiting because I am in my sweats and my house is a mess (something I am working on getting over). Let them know that you do not judge and you accept and love them as they are. Knowing you are coming over in your knock-around clothes makes us feel better about our appearance. It takes a long time to look put-together when you have Lyme, and knowing that you will be in your PJ's, too, makes us feel more comfortable. Like we are finally not the odd man out.

6. Help out their primary caretaker. Be it their husband, wife, child, boyfriend, girlfriend, sibling or roommate, the primary caretaker is most likely spread very thin and under a lot of stress. Ask to take them out to dinner sometime--they need time to act "normal," too. One of the best presents given to my mother when she was in the crux of nursing my father back to health during his battle with Lyme was a spa package. She was able to get pampered and relax. And when she returned home, she was rejuvenated and ready to lovingly take care of my father again. Being a caretaker is often a thankless job, so if you are on the outside looking in, be sure to express to the caregiver how much you appreciate them taking care of your loved one. In most cases they are stretched way too thin but will never let the Lymie under their care see it, so they, too, often suffer with frustration in silence. Sometimes they just need an outlet to vent to. Helping the caretaker will also help the Lymie.

7. If you are a primary caretaker, make sure to take time for yourself. The pressure and stress can make you sick, and when you are sick, your ability to take care of another is depleted. Always make sure to take care of yourself first so you can be your best self to take care of the Lymie in your life. I know this is hard to do and can sound counter-intuitive, but it is so important to take care of yourself first and then take care of your "patient." It works out much better in the long run. Also, do not feel guilty about leaving the house every once in a while to do something fun with your non-sick friends. We understand that you want to live your life just as badly as we do and sometimes we feel guilty for holding you back. So go out and have fun when you get the chance.

8. Check on them and let them know no response is needed. Feeling insanely overwhelmed is a symptom of Lyme disease..I remember when I first announced it on facebook and started blogging I was overwhelmed with loving messages, texts, and phone calls. I recall feeling so much love and support but also feeling anxiously overwhelmed...I needed to respond to all of these people who took the time to send me words of encouragement, but sadly that simple task seemed more like a mountain than a mole hill in the shape I was in at the time. The messages that helped me the most were encouraging and uplifting, but the writer let me know the message was just to let me know that they were thinking of me and that they did not require a response. It took the pressure off of me and allowed me to just sit back and appreciate the love that was being shown to me. I often get texts from friends saying, "You don't have to text me back. Just letting you know that I love you and am praying for you. Let me know if and when you feel up to talking or hanging out, but I understand if that cannot be anytime soon. Love you and just wanted to let you know that I was thinking about you."

9. Help with Errands. When you have Lyme disease, the simple task of picking up a few things from the grocery store is at times impossible. A good way to help would be to say, "Hey--I'm running errands on Sunday and wanted to see if you needed me to pick you up anything. I will be passing your pharmacy and going to the grocery store anyway, so I decided to see if you needed anything while I am out." When people ask me if they can do this for me, it is a God-send. I do not want my disease to put anyone else out. Sometimes I feel that I have 'maxed-out' my favors from certain people (although they assure me this is not the case), so it is hard to be constantly asking for help. When you make it sound like its not a big deal--like you are not making a special trip or going out of your way--it is easier for us to accept the generous help that you offer. It is easier to accept help when someone offers you something specific, not just a generalized "let me know what I can do to help you," because in my case, I feel guilty assigning you tasks to do for me.

10. Give (appropriate) Gifts. While sending an Edible Arrangement is a very sweet idea, it is not a great gift to send a Lymie. If your friend with Lyme is anything like me, I can be strong and stick to my diet unless the "bad" food is put directly under my nose. On the days that I do not possess as much willpower, I will end up cheating on my diet if the "cheat" food is right there in front of me and I pay for it by feeling sick afterwards. Great gifts are also relaxing or healing gifts. Think herbal teas, rice packs (to heat up in the microwave for pain), relaxation or guided imagery CDs, prayer cards, inspirational books (something that only requires a page or two of reading a day...most lymies memories aren't up to par and reading more than a few pages is almost impossible), or a plant that is easy to take care of, like lucky bamboo. Gardening is very therapeutic to those with chronic illness--being close to nature and caring for a living being created by God is very cathartic. Give them something that requires at least a little effort to keep it alive, but not too much so that the plant does not survive.
Another gift idea would be to offer to pitch in for their supplements one month. But you have to have the right kind of relationship for that--you don't want the Lyme to feel like a charity case. If you are financially able and feel comfortable discussing the topic, ask your Lyme friend if you can help with a portion of their supplements for that month or next month. Supplements and vitamins are so important to help protect our bodies from long-term treatment...but the cost really does add up. Taking some financial stress away (even in the smallest amount) does wonders for a Lymie. Something as small as $5 or $10 to add to their medical fund is a great way to show you care. And in doing so you are helping them heal when they use the supplements. Just be sure to say "help pay for part of your supplements" unless you are prepared to foot a $200-$300 bill.

11. Donate to their Cause. Find out if your friend with Lyme is tied to any particular Lyme advocacy or support group. In my case, I would love for my friends to donate money to the Alabama Lyme Disease Association. Many Lymies have a Go-Fund me page--Help For Ian is an excellent example of a great cause (one that is close to my heart) to donate to. Here is a quick blurb from Ian's story, "Ian contracted Lyme Disease (at the age of 7) in December 2010  and, after seeing 25 doctors and specialists in 3 states, he was finally diagnosed in June 2011.  We had to travel over 1,000 miles to find a brilliant and compassionate Lyme Literate MD who would diagnose and treat him." These Go-Fund-Me pages are a great way for Lymies to be able to afford the immense cost of treatment, their medicine, and their vitamins/supplements. The smallest donation, even $5, will make a significant impact on the life of the Lymie you are donating to. Financial stress can make the healing process for Lyme disease take so much longer. 

12. Put them on the prayer list at church. Then tell them. I have learned through this disease the intense and divine healing that comes from the power of prayer. Especially having so many prayers being said in your name by so many. It is a wonderful, divine, and healing gift to give someone and a great way to show that you care.

Click My Prayer Quilt post to read about the best gift I have received during my battle.

Isolation

As a (very) amateur blogger, I have figured out how to track where my page views are coming from. The most googled phrases that send people to my page are about Isolation. The searches mostly include Lyme disease, isolation, needing companionship, am I alone?, etc. So I thought I would write a quick post about how Lyme causes isolation as well as ways to fight it.

How Lyme Disease Causes Isolation:

1. Unfortunately, some people will not understand you and some people will not believe you. Lyme is in most cases an invisible illness, so not being able to see that you are sick makes it difficult for some. How many times have you heard, "well, you don't look sick!"? Those who are not supportive and not willing to try and understand may be worth checking off your list of good friends. They are not bad people (in most cases), just not the right type of person to be on your "support team."

2. The disease itself. I cannot tell you how many times I have been lonely and feeling isolated and the phone rings. It is a friend or family member checking on me. But I feel too sick to answer the phone. Or am in too much pain to text back. Or am too overwhelmed to even respond to a facebook message. So, after a while, people stop calling. Or if they ask you to go out, and you say you cannot because you are sick, they might eventually stop asking after hearing so many no's.

Here is a great article on why those with Lyme disease become estranged...just click here.


Ways to Fight It:

1. Do not be embarrassed to have Lyme disease or to be sick. My pride got in the way and I tried to hide my illness, which is the exact opposite thing to do. You do not have to shout it from the rooftops, but it does help to let everyone in your life know. And also, give them some information..do not assume they are going to do copious amounts of research to understand what you are going through. Here is a good link from one of my favorite sites, tiredoflyme.com: So you have a friend or family going through Lyme disease, a guide to their struggle (click the link).
On a side note tiredoflyme.com is an amazing site. It explains Lyme and symptoms in brief, easy to read articles. They use understandable terms and it does a great job covering so many aspects of Lyme disease. I strongly suggest you check it out!

2. Find a support group. I have found facebook to be the best. Just search the word "Lyme" and your city or state. Joining the Alabama Lyme Disease association was one of the best decisions I have ever made. Or just search for Lyme Groups on facebook...there are more than you would ever guess. You can post questions, suggest answers to other Lymie's questions, or just say hello. Pretty soon you will discover an entire new group of Lymie friends. I count some of my closest friends as the Lymies in my support group. I have shared, easily, things with them that I would never be able to tell anyone else. We meet every few months, I can grab tea with someone when I am feeling up to it, and it is an amazing resource. I have learned so much from others who have gone through what I am going through. And since Lyme is so difficult to explain to others, it is much easier to vent to someone who understands exactly how you feel. And there is comfort in knowing you are not alone!

3. Reach out. Recently I was having an anxiety attack so intense that I was ready to go to the ER, knowing that they would then put me in the psych ward. Feeling so horrible took away any since of pride, and I wrote on facebook, "Asking for prayers for peace and healing." I had almost 100 people respond. I felt so overwhelmed with love and compassion, not to mention the power of prayer! Do not be afraid to text your close friends that you are needing prayers or positive thoughts. They most likely want to help you but do not know how, so they will be thrilled to help.

4. Use your good days to be with or talk to friends. You have to be very careful on this one not to over do it, but if you are having a good day reach out and ask a friend to come over and watch a movie. Or grab tea. Or go on a walk. Even if it is not someone you have talked to in a while, a good friend will jump at the opportunity to see you. Or, if you do not feel well enough to have company, just call someone to say hello and have a 15 minute phone conversation.

It is Hard to Help People With Lyme:

Can I pick up dinner for you? Would you like to go grab a drink? Do you want to go sit by the pool?

No, you probably cannot pick up dinner for me because of my strict diet. No, I cannot drink alcohol and do not feel well enough to meet you at a bar and drink water. Vitamin D is good for me, but I am too exhausted to get out of bed to go sit by the pool.

See what I mean? Stay tuned for my next post about how to help people who have Lyme Disease. Click here to read "How to Help A Lymie Out."

Lyme in Alabama

It seems as if at least once a week I hear of someone who is suffering and their doctor told them "there is no Lyme Disease in Alabama."

This is an absolutely false statement. I am proof that Lyme exists in Alabama. My family is proof--my father, my sister. If you would like more proof, click on the Alabama Lyme Disease's facebook page here.

If you are sick and your doctor tells you there is no such thing as Lyme disease in Alabama, find another doctor immediately. Lyme is in Alabama, infecting dogs, horses, humans and more. You must be proactive and keep searching until you find an answer.

Sorry for the short post...I just want everyone who reads this to know that there is Lyme in Alabama.