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Lyme Disease sucks. Out of this sucking, Nicolenya Caltman pulled up her big girl panties and wrote a book for all "Lymies"; so that the morbid loneliness that haunts all of us wouldn't sting quite so bad. If nothing else she figured she'd share her undying with and humor to make you piss your pants.Nicolenya Caltman is currently in a healing phase from what was a very shitty battle with Neurological Lyme Disease. She is also the author of Imperfect Beautiful Love, a book of love poetry and of her battle with Lyme Disease.
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Lil’ Lymie Fly Away Home
By Nicolenya Caltman
Table of Contents
Page 6 Dedication
Page 7 Introduction
Page 10 Chapter 1-The Worst Death of All~The Death of The Self
Page 23 Chapter 2-The Art of Letting Go~Clearing the Thicket and The Path To Our
Page 29 KEY: 1 READINESS
Page 49 Chapter 3-Falling in Love with Yourself~Realizing You Are Deserving
Page 54 KEY: 2 ACCEPTANCE
Page 67 Chapter 4-Taking A Break and Gaining Knowledge
What You May or May Not Know About Lyme
Page 70 Drugs and Supplement Protocols I Have Tried
Page 88 Other Drug, Supplement, And Misc. Protocols I Haven’t Tried-
Page 93 Muscle Testing to Find Out What Will Fit Your Body
Page 96 Lyme, Co-Infections, Pregnancy, Breastfeeding, Sex and Infertility
Page 103 Keeping Healthy Tips
Page 108 Symptoms Lyme Disease
Page 116 Diet
Page 118 Chapter 5-The Most Important Decision You’ll Make
Page 125 KEY: 3 CLARITY
Page 100 Dealing with The Embarrassing Mother Fucking Relapse
Page 136 KEY: 4 ASK
Page 139 Chapter 6-Keep Your Eye on The Prize
Page 141 KEY: 5 CREATE & BELIEVE
Page 145 Chapter 7-The Climax
Page 149 Key:6 Delivery-“Action”
Page 152 KEY: 7 RECEIVE-“Celebration”
Page 156 Mastering Your Life and Your Healing
Page 157 1. Take Heed unto Thyself
Page 158 2. For as He Thinketh In His Heart
Page 163 3. Sing unto Him a New Song
Page 165 4. Let All Things Be Done Decently and In Order
Page 167 5. Now Faith Is the SUBSTANCE of Things Hoped For
Page 173 6. Meeting Specific Needs
Page 177 7. Whatsoever Ye’ do, do it HEARTILY
Page 179 8. Loving Thyself
Page 183 9. Believing
Page 188 10. Committing to Yourself
Page 190 11. FEAR
Page 192 12. Grounding Yourself
Page 197 13. Maintaining Your Flexibility and Gaining Back Your Magnificence
Page 200 Poems From My Battle With Lyme Disease
Page 213 After Thoughts from Oz
Page 220 References
Page 224 Other Contributing Factors To Consider
By Jeremy Todd Murphree Blogger https://www.morgellonssurvey.org
For my adorable, beautiful, man…my dearest darling. I could not have voyaged the
green sea without you, and “M” who held me up and kept me from falling. My daughters Julie and Jackie, grandchildren Lilly, Elsie, NayNay, Tobyas, Leila, My sons Micaiah and Ivan, and Mason even though he can’t deal with me with this disease right now, my mom, and Rosie…and Merriam-Webster, who always seems to have just the right
definitions for me! (All definitions are property of Merriam-Webster.com and Verses from KJV.)
Also many thanks to my friends Jeremy Todd Murphree and Jory Adnick for their
Welcome to my suffering. I am Nicolenya. I have Lyme. Sounds like an opening for a support group…but there it is. I am beginning to think that much like the saying “Once an alcoholic, always an alcoholic” is true in this case, and that in my case “Once a
“Lymie”, always a “Lymie” will be my lot. I don’t want to believe it but I fear this is the path I am going down. There really should be support groups all over the world for us and beautiful retreats to run away to, where we can receive love and encouragement…but there isn’t…perhaps someday. A beautiful, novel, idea.
I decided to try to write this book with the hope that in reading about my suffering, it will alleviate yours some…that you won’t feel so alone in the “Green Sea”…that
someone is suffering in spirit with you and holding your hand in bed…and that a most delicate, intimacy will be shared…and through our “communion of souls” we can make it through this together. I should forewarn you, there is a lot of cussing in here…it is not meant to offend…and I have a feeling anyone with this disease has at least thought the words in their head. LOL
I hope that somehow this book will also help to shift the beliefs of the “standard medical community and insurances”. That they will all start to look better at this little-known disease (even though it has been around for eons), and realize it is quickly turning into a pandemic issue capable of epic proportions…and start taking it seriously.
I am writing this in the middle of yet another relapse to keep myself from wanting to jump off a cliff into a beautiful, deep, canyon of rocks and hoping that all my suffering will have not been all for naught…and that somehow it will turn into a miracle that saves someone else from suffering the devastating effects of Lyme. Even if the miracle oil comes from sarcastic laughter at my “groanings” in our shared experience.
The exercises I have included in this book are strategically placed through out to give us time to really take time on our healing and coming home to ourselves. Take note that these exercises are geared at “spirituality” and not religion. I however have made references from the Bible in there in case there are those out there who question because they might be Christian they shouldn’t do them. I myself am a “Christian”. I believe in love. I believe God would want us to be perfect and whole.
There will be a lot of back and forth as I go through this healing with you. I am 47
years old and have taught classes on spirituality for over 20 years. The methods in this book are created by me at the request of clients both privately and in classes I have taught; “Isn’t there an easier way?”. I personally have seen quick changes for people in doing them. It is my hope that somehow, they will help us find peace in the middle of the
My best advice for other “Lymies” out there…do not wait for someone else to be your advocate. Be your own, and research like a mad man…and above all, don’t give
The Worst Death of All~The Death of The Self
I want to die. I do. I am done. I am done with this mother fucking disease. I am angry, and barely holding on to my sanity. I have lost almost everything to this disease. My new small, but useful career as a personal trainer and belly dance-fitness instructor after working diligently losing 248 pounds…my body, gaining back about 60 of it from
damage done to my thyroid and my poor body and not being to exercise…members of
my family…almost lost my boyfriend several times I think he’s still here…and the worst death of all…the death of myself. The beautiful self I found after my beautiful divorce, after losing myself temporarily to that “ass hat”…I am still trying to forgive.
There has been such a waste of time with my health, between not having the right
family support, the right doctors, doctors not listening to me and just thinking I am crazy.
When the reality of it I am probably saner than them. I am more aware than
them…shame on them. Shame on them for making me think I was crazy! My life, your
life is worth something…and we deserve to be helped.
I am tired of these sleepless nights. I take enough Melatonin to knock down a rhino (about 20 tonight) and here I am up. I am tired of the crying, of the hurting, and feeling like an “untouchable” in India. I hate looking at myself in the mirror after
working so hard to love my body, elephant skin and all. To go from a woman unashamed to show her belly while dancing to a woman who just wants to crawl in a hole…disgusts me. I hate myself. Which is a problem, because I look for acceptance from my boyfriend.
I am aware of my shortcomings since Lyme and it makes me hate myself even more. I don’t feel like a woman. I feel more like a frumpy, dumpy, curmudgeon, ogre type thingy hiding in a hole. I have become a recluse.
Is it so bad to need him to just grab me, throw me on the bed, and ravage me like a burly pirate, pillage and plunder the gems of the ruby fruits…and make me feel like a woman again? His very own private little tart? Hot pocket? One doesn’t feel sexy in the act of glorious self-love…Oh yes, by the way...I have been failing to orgasm. Lyme has 11
apparently taken that from me too. Did you know that can happen? I’d like to believe it is just because it has been WAY TOO LONG!!! However, I don’t think that is so. Others out there have spoken of the same experience.
I feel so out of sync with myself and the world around me. I miss dancing, teaching, supporting, sex with my boyfriend, sex with my boyfriend. Yes, I said it twice. I miss feeling sexy, I miss feeling and being strong. I miss kettlebells. Where did I go? How do I find myself again? Sex with my BOYFRIEND would be an awesome place to start. It
however is just a guilty pleasure and doesn’t fix what’s wrong inside of me. The truth is I don’t know I could get naked in front of him right now even if he were here. I feel so gross and unappealing. My beautiful self is hidden somewhere deep inside of me and I am scared I’ll never find her again from the filthy little buggers using my brain like a cafeteria.
I know I should be meditating. I was a spiritual teacher as well. It isn’t that easy to get quiet and meditate when you have millions of minions milling around in your brain digging for gold…your gold…your gems. Your intelligence, your creativity, your voice, your truth. I had a high IQ before, it is mediocre at best now. I have shitty short-term 12
memory, my impulse control sucks ask my boyfriend, and now it has begun to affect my long-term memory. I can’t do math past fractions now, misspelling words, forget what I am doing, what I am saying, it has affected my speech at times so bad no one can
understand me, I still stutter at times so FUCKING EMBARASSING and at random
times…never knowing when it is going to come out.
I am scared to death to even have sex with my boyfriend at this point. I am very verbal with him and it makes me cry even now as I write this. Can you imagine? “OOOH
YYYES BBBBABY PPPPOKE IIIIT RRRIGHT TTTTHERE” Oh hell no! I’d rather be
gagged. While I am sure my boyfriend would be very gracious, understanding, and
beautiful because that's who he is, I just can’t even fathom the thought.
It has affected my already suffering penmanship and overnight. My one pleasure right now in the midst of all this is all the art painting and clay I do for my darling. Poor dear.
He humors me with it. It is starting to look like the “Wall of Gaylord” at my house…At one point I could barely do anything for him and I thought I would just die.
I fell five maybe six times last year. Was walking so bad at one point the hospital staff kept trying to shove a walker down my throat. I’d rather die. I refused. I am a very difficult patient. Can’t keep me down. I am very rough on my body. I am so used to having been independent my whole life and was such a beast exercising before this has been a very huge pill to swallow. The woman who needed no epidural during birth, up and walking right after C-sections, gallbladder surgery, and walked a mile in the hospital after a hysterectomy (also Lyme related)…now pretty much glued to the couch or my bed.
I try to push myself but walking is very hard for me now. I have tried dancing before months earlier but had issues after and well, quite honestly…I am afraid of failing again and haven't tried.
My body is so depleted of vital nutrients from the minions who knows whether how I feel is related to lack of nutrients and actually in remission or if I am still infected. No one will test me or help me. I did finally get help from one doctor who could sympathize with me and tried but she was a traveling doctor and left. There has been nobody since.
Constant denial, and why? I have late stage chronic Lyme. Yes, that's right…Even
infectious disease doctors denying me for the same reason. Handfuls of them. Like they are just washing their hands of me. I do have an appointment finally not for six weeks and because a referral wasn’t filled out right.
Then there are the “LLMDs” Lyme literate medical doctors; who charge an
astronomical fee that people must go in debt for emptying their savings, using charge cards to pay because insurance companies won’t cover Lyme visits, or tests. People like me can’t afford the illustrious chosen ones because they charge about $1,000 for the first visit. Who knows how much for the rest.
I want to give up…but I promised my boyfriend I would keep fighting.
It has been about three weeks since I have been off the antibiotics. I went off at two and a half months after round four because of what they were doing to my brain. Scary things…bump in the night things. Things I haven’t spoken of to anyone except the
insurance company out of necessity…not even my boyfriend. I started going through
“episodes” of violent rocking, hitting my head, feeling like bugs were crawling on me, up down, up down I went on the bed, restless legs…just to name a few. It went on for several hours the first time. All night. The other two were slightly less time but the same effect. Very exorcist like.
Each time losing another ability and piece to myself. However, there was a welcomed change after the first episode. I had been in horrific pain I can’t even describe. Think elephant sitting on your lower extremities and playing Twister. The night before the episode I had horrific pain and after no pain. None. Not normal. Probably from brain damage. Little by little I do seem to have more pain sensation creeping back but not like before. Very minimal.
I have tried everything. So many antibiotics, supplements and natural remedies. They would work in the start of them only to go back to the same vicious circle. This is because as I found out later, the Lyme bacteria can morph into cysts and in and out when they feel threatened and then one feels better seemingly. Then suddenly, its sudden death match…and they multiply. They are angry and you get sicker it seems each time. The 16
bacteria essentially fart as they are dying creating a noxious gas you can’t get rid of…neurotoxins. Just as difficult to chase. If you try to detox through sweating which is supposed to be the best, you must take a long hot shower right away or it gets soaked right back into your body and can create rashes and sores on your skin. This has been my problem. I live in a house with almost my whole family. There are seven people all living in my mother’s house. So, she understandably so watches the bills. We all pay a section but still showers are a problem. As it is I take a shower about every three days at about 5
minutes is the allowance. If I exercised etc. It would be a huge problem because I couldn’t get the toxins off me. Who knows if I could even dance etc. again anyway.
I have so much belly dance gear it looks like I pooped coins and glitter everywhere. I yearn to get into my garb again. I feel its calling to wear the baubles and bangles deep within my soul. The sadness growing within me is epic, missing my dance. Am I the greatest dancer? Laughing, no! It feeds me though and I have seen worse.
It’s like my inspiration is gone. The only inspiration I seem to have is the deep love I have for my darling, that forces out a cacophony of chaos and color likened to a pooping 17
pegacorn. In all my arting, farting for him I have found a part of myself I lost long ago...a feeling of joyful, childlike, innocence and mysticism that is as overwhelming for me as I am sure it is to him. If I lost my ability to art and fart around for him…I think I would die inside. What then would I have to give him but just a jumbled mass of blek?
This is very hard to share all of this of myself. I hope it helps you somehow feel a little less alone in reading.
I am hanging on by a thread and about to have a break down. It would not take much more to push me over the edge. I wish there were some sort of Lyme support group out there or even online. There are some out there but minimal and I have never gotten answers. They all seem to be old bulletin boards where there is no life. Probably because everyone there is suffering too. I have thought of starting one myself but again I am like you…tired and run down. Sometimes though the greatest supporters are the ones who need supporting. So, we will see what I do with this thought.
I am tired of feeling this neurotic mess inside my head and so worried I’ll lose my boyfriend to this because it is hard to handle. I can’t see one reason why he is even still with me at the moment; and consider myself a very lucky woman. Without him, my
inspiration to any goodness within myself…I have lost so much of myself through this disease, I would wither and die. Herein lies my problem. Because of this disease in my brain now I think obsessively so about losing him because of my mess with this disease.
If I lost my ability to art for him, and write poetry for him; it is how I express love for him…I would have nothing to offer him anymore and all he would be left with is this shell of a person. So, I spew out from my soul as much love as I can possibly art so he has a record of sorts of how important and precious he is to me in case I run out of time and words to love him. I am not good at expressing in person the love I have inside me for people because I have not had a lot of it myself in life. Just since him.
The last few episodes were really, hard on me. I am afraid to go to sleep because I might not wake up and be able to love my son or my darling anymore or my kids who still love me regardless of what I can do for them from this disease…or my grandkids. I am so tired I can barely see straight at this point. This book is my last effort to re-channel my energy somehow and try to make this fucking disease count for something…that the 19
knowledge that others are not alone in their struggle will somehow comfort them and perhaps this doctor will be able to cure me and then I can share the wealth of info with others and in the process of this won’t drive my boyfriend crazy.
Perhaps my amazing will be shown…so that I can find myself again and then become
a compliment to him and my family so that I don’t feel like an albatross around their necks…a burden. Members of my family have called me a burden since this disease…but My Darling never has. Even though I have been a huge pain in his ass whether I could help it or not…he’s been there and never not even once called me a burden; and when I am not in the midst of minions eating my brain he helps me to see I have something to offer the world. I have gotten sidetracked though at times because of the debilitating pain, the “misfiring” in my brain that is always unexpected, and then just the unwieldy weight that having this disease carries.
I wonder if I will ever be able to rise above this. Sometimes it is just too much.
According to the statistics the death rate is not high for Lyme for health reasons though can happen; the death rate is very high among our fellow “Lymie’s” due to suicide. My heart goes out to all of you who are thinking about this. I can understand. I hate being in 20
this body and I have at times wished I would just die and not wake up; because so much of myself was lost, coupled with the lack of support, then the pain was just too much to bare. I was very afraid this was going to make me insane.
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