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.

How to Safely Remove a Tick

How To Safely Remove A Tick

Thanks to Lyme Disease Posters on Facebook for this important information.

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! 

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.

The Prayer Quilt

My Healing Prayer Quilt

My Beautiful Prayer Quilt--Front

This is a follow up from the post, "How to Help a Lymie Out."

This quilt was recently sent to me by one of my aunts to bring me healing and peace. She told me the story of how it was made lovingly and with prayers by the Prayers and Squares quilting guild that she is a member of at her church. Their priest blessed this specific quilt at the end of Sunday Service. My Aunt held it up and the priest anointed it and said the prayer. After the service, the congregation come over and tied a knot and said a prayer for me. There was a small sign beside the quilt with my name on it and included the information about my illness, Chronic Lyme Disease. My aunt and uncle also tied knots and said a prayer for my healing.

She sent me the prayer quilt with some knots left untied. Those were for family, friends, and others in my life to tie and pray over. So far I have prayed and tied a knot, as has my boyfriend. I took it to my Integrative Healing Specialist, whom I love and respect with all my heart, and she blessed it every day for one week. She also had other patients that I have bonded with over the years pray over it and tie their own knots for healing and peace. It became so popular at her healing center in Homewood that the patients have inquired into donating to my aunt's church in return for a quilt of their own. My aunt, the continuous adventurer, is on a cross-country road trip and is going to talk to the Prayers and Squares Quilting Guild when she returns home. I will keep you updated on the status.

Close up of knot, Prayer Quilt Front

I plan on having my parents and sisters tie a knot while saying a healing prayer and also having our minister pray over it. I will get more friends and family to tie knots and pray as well--that way the prayers and divine healing powers will keep building and building upon each other and bless me continually.

What I love the most about this blanket--besides the love and well-wishes from my aunt and uncle that is symbolizes--is that you can actually feel the power in the blanket. You can feel the divine blessings and the love that went into making it. You can feel it has been loved and prayed over. You can touch it and feel the warmth of God. I am not sure if I would have felt the divine healing energy of the blanket so strongly if I had received it at the beginning of my treatment.

As I have mentioned in a previous post, My Curse is Also My Blessing, my relationship with God has grown by leaps and bounds in the past year or so. Having my relationship with the Creator stronger than it has ever been, I feel the strength in the prayer blanket like a soft electricity. When I am unwell and am on the couch in my den, I have the healing blanket on me. And when I go to bed at night, I bring it in and put it on top of my duvet. I can feel it protecting me, almost like being wrapped in a cocoon. When I am snuggled up in the blanket, I can feel the love of God and countless others and I feel safe and at peace. I believe with all my heart that the blanket, filled with so much love and prayer, will be a key factor in my healing process.

Prayer Quilt: Back

Here is some information from the Prayers & Squares web site: "Prayers & Squares is an interfaith outreach organization that combines the gift of prayer with the gift of a hand-tied quilt. Unlike many other groups that make quilts for charitable causes, the purpose of Prayers & Squares is not to make and distribute quilts, but to promote prayer through the use of quilts. Our motto is: "It's not about the quilt; it's all about the prayers." 

Each Knot Represents a Prayer

The idea behind these prayer quilts is simple. A heavy thread is used to take stitches through the quilt layers, and the ends are left free to be tied with square knot. As each knot is tied, a silent prayer is said for someone in special need, who then receives the finished quilt.Through Prayers & Squares many quilts have been distributed, each a special gift of love. They have been made for sick babies, for cancer and AIDS patients, for adults and children facing surgery or personal crisis; for many reasons, but each for someone in special need of prayer." 

Prayer Quilt: Back


More about Prayers & Squares, from their web site:

"Can you touch a prayer?
Can you pull it close and feel its comfort?

You can if it's part of a Prayer Quilt from Prayers & Squares, the Prayer Quilt Ministry. It's a simple idea with powerful results, but our Prayer Quilts are more than just colorful, comforting blankets. The warmth they bring comes from the prayers that are tied into each knot. Who gets these wonderful gifts of prayer, and who is making them? You'll want to read our inspirational stories, check out some photos from our members, and then you might want to start your own chapter.

The History of Prayers & Squares

Kody in 1992 and in 1996.

A few ladies started an informal quilting group in 1992 at Hope United Methodist Church in Ranch Bernardo, California, with no other purpose than to have fun making quilts together. Then, a group member's 2-year-old grandson ended up in a coma following heart surgery. His doctors were very pessimistic about Kody's chances for recovery. The ladies decided to make a quilt in vivid primary colors. There was no time to quilt it, so it was tied with perle cotton thread as silent prayers were said for Kody. "There must be a prayer tied in with each knot" someone remarked. The group's first prayer quilt was rushed to the hospital that night.

Even before he was fully conscious, Kody's little hands were touching and fingering the knots on his quilt. After he came out of the coma, the quilt became important in his recovery. In fact, his doctors wrote into his medical chart that the quilt was not to leave his side! Through several subsequent surgeries, whenever he needed another needle stick or a scary test, that quilt was right with him, providing comfort and strength for many years. We are sorry to report that Kody died suddenly at age 14 in November, 2003. Our prayers are with his godmother, Carolyn Wright and his grandmother, Reva Eggleston. Both of these ladies were part of the founding Prayers & Squares group." -The Prayers and Squares web site (click this link to visit now).   

Complete List of Pre-Lyme Diagnoses

Here is a list of everything I have been diagnosed with since I began getting really sick; I believe my first official diagnosis came eight years ago (after a frustrating period of time of multiple doctor visits without a single diagnosis). Every one of these diseases were all caused by me having Chronic Lyme Disease and its co-infections (I was most likely born with this disease). This miraculously means that once I conquer Lyme, most (if not all) of my once considered incurable/life-long diseases that left me bed-ridden will go away and I can finally live a healthy life. I can invest a few years or more of my life into intense treatment, and although it is nothing short of torture, it will end up being one of the biggest blessings of my life.

The significant lapse in time between all the below illnesses and my diagnosis with Lyme is why Chronic Lyme Disease is known as "The Great Imitator." Click here to see what other diseases Lyme mimics (well over 350), such as MS, ALS, Parkinson's and Alzheimer's.


Illnesses I Have That Were Caused By Lyme:

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 (repaired)
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
Panic Attacks
Severe Muscle Spasms
Acute Paralysis

Additional Diagnoses from LLMD:


Chronic Late Stage Lyme Disease

Several Co-Infections, including Babesiosis, a malaria-like parasitic disease caused by infection with Babesia, a genus of protozoal piroplasms and Bartonella.