My moms favorite singer & song.
My moms favorite singer & song.
I may not bring it up but I always felt grateful for any discussions regarding my 13 year old Illnesses that still affect me to this day. Trust the fact that I miss being one of the people lost on medical issues, all from not living it. I also feel loved when someone talks to me about it so as private as I am, it’s consistently taken away with positive feelings.
I will only offer my own information in writing or to my family that lives with me but I’ll continue to answer letters to what I do know.
I want to help just as I looked for that help years ago.
Although, living with an invisible illness (Lyme carrier/flare ups) and trauma to my brain with actual MRI pictures of my 7 inactive brain lesions and one large black hole directly over my hippocampus, also stops me from verbally replying my truth and or fighting till the tail end to not go to a doctor appointment or even a ER when needed.
That’s how you know someone is being honest over their illness.
If they fight the appointments, schedules, emergency situations, and/or are vague with questions. They’re simply beat down, worn out, exhausted with all the fighting to stay alive, live normal, and feel well.
I don’t know how many people have pictures of their brain as adults or realize that migraines, falling, car wrecks-none of it can cause my type of brain damage. Others like me get the following, when you’re scared out of your mind in the beginning you’ll scour the medical planet looking for a minor, less frightening reason.
Unfortunately for me, the only possible medical reasons are Lyme disease, Multiple Sclerosis, Alzheimer’s, and Cancer.
I never have to this day been given an answer to which one is the cause to my pictures of my brain MRI.
I’ve been diagnosed with all 3 diseases (Lyme, MS, Cancer).
I’m the type of person that has needed answers to everything since I could walk.
Due to the above here’s what is exceptionally appreciated and beautiful, this changed me in a way that is positive progress.
I gave up on getting an answer to every baffling obstacle in life.
Now I accept I always won’t get one and I really don’t give a shit if I don’t.
Now my philosophy is structured and strict to reflect my truth. If it’s meant to be, it will.
I feel that last sentence in every facet of my being.
The chip that must fall, the what comes up must come down is this,
my dear friends and family that think I’m simply aging, or tired, having normal wear and tear, or natural mileage we all share, are forgetting my damage is in the prefrontal cortex which permanently damaged my hippocampus which is behind my eye and is where short term memory is stored.
I face a smorgasbord of undesirable outcomes.
I feel it worsening as the 3 neurologists said it would as well.
What’s supposed to happen, will.
However today I woke up; I can walk, talk, see, hear, laugh, listen to music, write, hold my daughters hand, kiss my husband, puff on my electronic cig, sleep, the weather is beautiful.
I can only pray I have many more.
Whatever you face, solely face it one day at a time.
Sounds corny doesn’t it? I am 100% serious.
“You’re in serious trouble. I can’t believe your doing this well”. – Johns Hopkins neurologist to me in the thick of misdiagnosis, cancer not found yet.
Be careful not to break your hand, forearm, or radius you’ll deeply regret it.
I’m impressed how quickly our bones heal in middle age, and yet it’s one of the longest ordeals I’ve ever experienced. The latter is obviously my frustration from appointments, X-rays and arm wraps for the hand that is dominant and comes in the handiest. It’s a foreign feeling to have felt my plate move once in awhile as well.
What is most perplexing is how often I’ve broken limbs growing up on a farm, and from a long era in my life where I went skiing every weekend, and yet none of those fractures gave me as much physical pain as this time.
I still threw away the pain pills and pretty damn proud I do it every single time they’ve been given to me.
If I can help in any way, my secrets to fighting any of your particular pain or feeling uncomfortably are; ice packs, heating pad, iced chamomile tea without sugar, L-Theanine, clonazepam, (no interaction), hot baths with epsom salt, and Magnesium Taurate with your daily choice in tequila.
*left hand wrap is in preparation for surgery to remove ganglion cyst.
From the moment this health nightmare started at the young age of 31, I’ve always relied on two consistent drugs; clonazepam and low dose naltrexone. Two in which play individual pivotal roles in my personal daily survival.
Low Dose Naltrexone is controversial to this day and any and every time I start answering honestly to prevent a reaction from a medicinal interaction I’m then questioned on it, “Why do you take 3.5 mg of compounded medication that isn’t FDA approved for a disease?”
As with most of the medical community, it’s text book only to treat.
“Because I was told by 2 neurologists that I carry MS and Lyme disease and various verifiable research confirms the prevention of further damage due to it.” – Oh..and MS scares the shit out of me.
I wrap it up with, “I know what it feels like to not take it, I’ll never stop.”
Moral of the story, don’t let peeps regardless of title, talk you out of what helps the shell in which you reside.
I’ve taken the research on LDN to three medical doctors and the woman out of three genuinely thanked me for the education behind the evidence while reading the literature in my presence.
Clonazepam oh clonazepam, it all started back when my two missed diseases had myself in such a sick state to so casually accept any medication at all for anxiety.
Sloan Kettering told me “Any person with an ignored tumor will have severe anxiety”. So I accepted the unwanted but much needed meds, for many years.
Valium and Xanax were readily at my disposal. Luckily for me I hate Xanax, while also knowing and can live with the fact that I love Valium.
Meaning I know not to take it..
With lorazepam I slipped into mini comas from being not of this earth.
Many paths with doctors later, a kind nurse asked what I thought of Lorazepam, after I told her she said,“You shouldn’t feel like that start taking this it’s called clonazepam..”
It literally saved my life.
So pain pills I won’t touch, I choose pain. As for every day necessities when ill these two can’t be more helpful.
Sure I cringe when I see Stevie Nicks say, “I’ll kill that doctor if I ever see him”, regarding her clonazepam addiction. Yes, I gulp wine when I read how your body can go into a seizure from withdrawal of clonazepam, but I feel safer when many a medical journal states the importance of a person with brain lesions and especially the black hole in ones brain is to benefit from clonazepam and the onset of dementia. I’d rather be safe than sorry, I’m no gambler.
My mom used to brainwash us kids on the dangers of drugs then call herself a junkie for relying on cigarettes, my upbringing makes me feel weak to count on these two medications but without them, questionable to the quality of life.
This survivor don’t mind these couple monkeys hanging around.
Great news! Sloan Kettering gave me 3 months off until I have to check in! (And they agreed, no need to panic). Sweet relief!
I have a piece of advice if you’re interested, stick with your cancer center when surviving such a monster.
Once put into a survivorship program some of us have to continue seeing other doctors due to location practicality but stick to your cancer center.
I did the right thing moving to where we are happy, healthy and comfortable, then checked in for my doctor red flagging my name. To the doctor it was an immediate alert with something suspicious at my carotid artery. I trust this man obviously since he found my cancer, but Sloan Kettering were who did my treatments and surgery. I’m notoriously loyal to who does me right.
As I await Sloan Kettering getting my cat scan video and blood work, I broke my hand simply dancing backwards while walking on uneven concrete to give my daughter a giggle.
Perfectly practical, right?
Growing up on a farm should usually guarantee you to know not to fly midair and land on your dominant hand but as my mom and Bobby always said “you take it to the limit every time”.
I’m seriously drugged up, and I’m told I’ll beg for my pills tomorrow. I’m one of those paranoid pill poppers, I’ll pass every chance I get. Haven’t take one yet.
Although I’m such a professional patient with being misdiagnosed for years then surviving cancer and Lyme disease, I do everything they say with a smile on my face, I’m genuinely annoyed my health is a constant. I’m ready for one sonofabitchin’ year without a hospital check in.
Constants – the things in life you know will always be there, no doubts.
The exceptional medical care when the scariest person to me (the anesthesiologist) turns out to be a new friend. I know instantly when I connect with a person. After a long talk she teased me for being a lightweight, I replied “not for long”.
The best of the best is in my daughter, as she will not let the house go a day without fixing it as I would and my medications are picked up, I always see my mom in her. Reliable, charitable and compassionate all rolled into one strong one.
I feel luckiest Bobby was home for this event. As soon as we finished unpacking from the move they lost the person that does literally everything. Bobby and paperwork are not friends for one but a comical one. I’m feeling thankful.
My fingers are straight again! I’m feeling thankful my surgery was so enjoyable for a pain in the ass klutzy accident and that my family and friends were 100% there and cared.Now you just saw what’s in my gratitude journal tonight. 😉
There wasn’t a night, except disco dancing, that Bobby didn’t have this played for me.
Every time it comes on we turn to each other, just as we always have, my right arm.
Being blessed with two seasoned doctors to continue watching me after our move following some recent blood work, I’ve discovered my name is ‘red flagged’ to my genius doctor that originally found my cancer in my trachea.
I’ll tell ya, I can get orderly and obsessive compulsive about cleaning, writing and music but after far too many years of misdiagnoses the last thing this cancer and Lyme survivor wanted to believe is, I have to get on it with enduring exhausting cancer testing and a day of blood panels all over again.
And here I swore I’d never walk into a hospital again.
It’s during my birthday week after Christmas as well, and that seems like my mom is still making sure I get a birthday present.
My entire life I’ve lived with an anxiety disorder and OCD. My family will tell you I only have anxiety and I’m just one of those cleanaholics, but I assure you what you could witness all to prove my consistent need with order most certainly entails OCD. Thankfully I’m not the type that needs to turn the doorknob ten times before I walk out but I do match the medical criteria…
Anyway, as dear friends and family were immediately concerned, inquiring me with questions about my upcoming cancer testing I felt grateful for all the love and emotional intelligence that surrounds me as I floated into the realization my medical team is not in my music city, my childhood goal. Now being a flight or 8 hour drive away, it may be time to force myself to keep still, and make where almost took my life the location that takes precedence. NYC did the treatments to repair me but this particular doctor in the south saved my life, and he is still watching out for me.
Ever since my misdiagnosis to MS my daily regimen has been a different kind of survival. I don’t bore people with it, I keep it to myself, but as we all do I actually see my living the health fight of survival from the moment my eyes open until my chores are finished, til closing my eyes every night.
As Bobby talks about his passion for the ocean again, and our daughter longs for the town she’s known from age 3 my compulsion lingers to what makes sense.
I don’t make resolutions but maybe it’s time this gypsy does just that. #noregrets
IF I GET GOOD NEWS~ AN UPCOMING BLOG WILL TELL A TROPICAL VACATION ACCOUNT TO APPRECIATION. MERRY CHRISTMAS TO ALL WHO TAKES THEIR TIME TO READ MY BLOG, I’M HONORED. HERE’S TO A HEALTHY 2019~
All of us have a story where we planned to go when we were children. What we wanted to be, where we wanted to live. Then as we grew up we may have woke up elsewhere. I remember every time I impressed my mom, she meant so much to me and was always my idol so to enlighten someone of her caliber at any time, was a reward in itself. During one of our many long talks on life, I recall making her feel deeply moved, and impressed with my comment, “I believe we can also miss our destiny with choices”.
My husband has worried about my choices through our entire 32 year old marriage. Yes, even up until this day.
The fact is from the time I could walk I swore I would become a musical artist. Then realizing not soon after, my ultimate goal as a music producer, the ideal part of the music spectrum to me. I worked at it from a very young age. I did many talent shows, leads in chorus concerts every school year, I sang in my dads popular band, wrote songs along with my harmonica, was chosen most talented in jr. high, and was even listed in Tiger Beat Magazine.
Anyone who knew me, knew of my pursuit, and where I planned to live since my dad had names / connections in Nashville. All the while and still do, creating my own compilation of music on cassette tapes/cd’s with hours of original research preceding the development. Music was all I thought about from the time I could walk. Literally.
My mom thought I was musically talented but also thought it was a sad, lonely life to become a musician, so she consistently thought of other things to deter me from the music world. Many times mentioning I was comical enough and such a good impersonator, she encouraged me to audition for SNL, while getting serious a couple times to suggest I join her beloved NAVY, since she always said I was, “tough and strong”. To me, nothing felt right except for music.
All the while I was taking my latest song I wrote to my talented dad who could play any instrument in which he was self taught, and had a long resume of performing with well known big names, to help me put layouts to my words and my music ideas. This went on until I met my future husband just by following a request by a friend to help her on a blind double date. I’ve never regretted going to that blind date meeting but I’ll never forget my dad saying, “I thought you were going to Nashville, kid?”, when he was told of my desire to marry Bobby. It was one of those times where the words left me as disappointed as he was, all the while I was feeling madly in love.
As my dad believed in my plan, it was a thought that was on my mind consistently, until I held my baby for the first time. As I asked to hold her on the night on the Thanksgiving I gave birth, her eyes and innocent fragility was the first time I didn’t see myself as a music producer anymore.
As much as Bobby and I have enjoyed living in the north and the south both, it never once entered our thoughts to end up where I always swore I would from the beginning stages of my life. I affiliated it with a different world of work. From the beginning, for rich or in poor, we stuck together.
Living as a cancer and Lyme survivor, while others may joke I am a gypsy (and I laugh along), what really matters is what I know. Which is; I have made the right choices by living near my mom until the end, raising our daughter in one beautiful area for 16 years of her life for her to have her own roots, and now at this stage of my journey this survivor may not chase the music scene but bestowed upon the rest of my days at my original destination, with the love of my life beside me.
Lukas Nelson (Willies son) with Stefani Germanotta (Lady Gaga)
When a friend asked about Thyroid disease I was once again put in the position to remind a loved one I never had thyroid cancer or a thyroid disease.
Although I wanted to help her I just read random surgery details for a thyroidectomy, and it was EVERYTHING that DID NOT happen to me.
I felt annoyed but it only lasted a minute.
It only annoys me to look back, and remember that people are on the lookout for help online. Not fables.
I’m sure it was different because my cancer started at my trachea but if people assume cancer in your neck causes the result of a needle to be stuck in ones arm and it ‘burns a little’, they’re dumber than I thought.
It’s not that easy.
*First thing to remember, ONLY READ MEDICAL JOURNALS and doctors notes. Never Google. Hit the Library.
*Second lesson: blood work does not find cancer. I have scars on my arms to this day from blood work to years of misdiagnoses. The repetitive blood work never picked up on tumors in my neck. Following my gut instinct, a skilled doctor, and a biopsy found the cancer.
Sloan Kettering confirmed to me, blood work does not locate cancer.
If you find you have cancer in your neck naturally you will want to know your stage of cancer, but it won’t be read until the surgeon opens you up.
The oncologist can estimate your stage or if it has spread, through tests beforehand, but nothing is final until you go through with the surgery, when it comes to neck cancer.
I was blessed to have gone to a cancer hospital that does not believe in over treatment. After watching my parents and husbands’ parents suffer, I walked in prepared to turn down the poisonous chemo or radiation.
I did inevitably have to endure radiation treatments, since they have advanced.
Your mind will want to overthink, the internet will blatantly lie to you, and yet the 4-5 hour surgery will be the guru to answer your questions.
So I can’t help you if you have a thyroid disorder or disease but I can promise you this, when it comes to cancer, I never thought I would get to where I am today. I did, and with whatever you may face you can too.
Positivity is the key to any obstacle.
“WE ALL OWE HIM FOR GOING FIRST INTO BATTLE. HE HAD NO ROAD MAP AND FORGED A PATH ON WHAT TO DO AND WHAT NOT TO DO. WE SHOULD DWELL ON WHAT HE DID WHICH WAS BEAUTIFUL AND EVERLASTING”.~Tom Petty about Elvis Presley🎼
Since I could walk he was and is my source when I need a smile.
Another first Elvis did — first satellite concert ever played across the globe. Aloha From Hawaii concert..
I meet people every day that I like, then I come across a kindred spirit where we are supposed to meet and I am fortunate to like.
One of the signs to how I genuinely appreciate a huge tumor being found and removed from my neck, I stay consistently open to meeting the unique and interesting which roam around me. Recently as I gazed at my long nails in amazement and delight that I finally have my own long nails, I watched my old favorite sport in which I played every Saturday with my best friend from my youth, Tennis.
An endearing woman, with kindness radiating from her soul and a thirst for a comrade, asked if I played. As our conversation continued, within minutes I was listening about her loss of husband to cancer. Even though I have experienced life stories being shared with me on the first meeting since a small child with strangers, this circumstance was as if a higher power wanted me to value a little more the second chance I was granted, and bring this person into my life.
My husband and daughter tell me I never want too much attention and work to avoid it, but I would not only never avoid someone needing a shoulder to lean on, it’s in my nature, I am also drawn to the needy and rare in life.
It could be the writer in me, the empath or the magnet I feel to help and heal. My mom always begged me to not let the world harden me, so I don’t dare allow it.
Cancer has changed me in many ways; my wild ways have tamed, my boundaries are built higher to avoid stress, I guide my body daily with as many healthy tactics I can discover, all the while using less of my mouth and more of my ears, for others.
This woman was full of fun loving antidotes, as she did so well with bravery and the loss of her first child at the tender age of 4. Meanwhile, we spoke to the other we discovered all of the things she felt she needed to share with me. While she hired me for a writing job, I wanted to do something in kind in return for her.
As the world grows more violent and volatile, I am on an enjoyable yet tedious exploration for souls who live for human kindness and peace. Not the type that can take from you, but the ones that make yours and their day brighter by existing in their very own shell.
That is what being here is all about.
Thank you Ms. America. 🙂
Narcissists need people and yet at the same time they hate that they need them.
*Only if an intimate, close, one on one relationship had transpired, be prepared for the smear campaign, (lies about you from them to others) your punishment, to follow your standing up to them. Also they live in fear of losing the fake facade they portray. * This is their problem not yours, nothing can be done. Best to simply ignore it.
My mom always said, “In your 20’s you’ll be stupid and take chances, your 30’s will be your most gorgeous, and your 40’s you’ll find out who you are”.
Once again she proved me right, without even being here to remind me of these life lessons. Her words and spirit gravitate through myself and my daughter while I awake to a new reminder every morning that floats throughout the course of my day. Yes, they’re that often. I was blessed with an amazing woman that was not only my mother but the best friend I ever had.
My daughter is beginning to save my compassionate strong empath doubts just as my mom always did for me, and just as my daughter did when she was born. She recently said, “Mama, your cancer started at your trachea, wrapped around your vocal cords, and ran all the way up your thyroid and parathyroid glands. If it weren’t for your loyalty to nana you would walk away”. She’s right and actually very rarely not right.
I’ve always been honest to a fault but also highly empathetic with being an empath. I always followed my moms golden advice, ‘be the bigger person’.
My 40’s was my wake up call that literally saved my life. The lesson stood beside my oncologist as if I was being dragged to a new path, a new beginning, a fresh start. I had discovered I was surrounded by narcissists since childhood. I’m no doctor, although well read. I’ll be the first to say even this particular group isn’t all narcissists per se but they most certainly fall in the cluster category. I was in this huddle as I thought a mutual love was taking place. That’s the secret on narcissists though, they love no one but themselves, rather, consumed with themselves. They’re born to become actors because you will bet your own short life they genuinely love you. While a common person makes excuses for ‘loved ones’, they take the target as seriously as a high paying career. The pay? For them to have as much attention they can manipulate out of you; self love through your admiring eyes, self positivity, affirmations, a busy schedule to place you in awe, a heartbreaking story to set them high of importance, all to fill that eternal emptiness that they keep buried deep inside. Believe me, that part made me feel empathy and compassion as well. If you are feeling sadness from reading that emptiness sentence, I’d love to hear from you. We are a dying breed. Although it’s nothing to have sympathy for, it’s something to run from.
Narcissistic abuse is on the same shelf as cancer. If you haven’t lived it, you won’t get it, but you can educate yourself. Some of what I share may however ring a bell and you can go back to loving yourself again.
Since early childhood I was subjected to abuse. My parents were wonderful but worked long hours for six children, I never blamed them. They did their best to keep us happy and healthy. However, I was abused from an early age by a family member that inevitably programmed me to believe I deserved this special abusive treatment. As all people know who have been in my shoes, the goal is for the abuser to gain a reaction in which would make the abuser feel better while they can be placed on a pedestal to look around for vindication, “See? the stupid doormat is crazy, I’m the normal one”. They want to believe, so someone has to be the stool pigeon to make that happen. Any type of reaction is what matters to them. Control freak is an understatement.
My work and careful steps to walking around my abusers eggshells would inflate the abusers self esteem while mine would be beat down. They are referred to energy vampires for a reason. Leaving early in my life for marriage blessed me with finding my soul mate, while also gave me the freedom I yearned for. As much as I hated being away from my mom, I was ready early to be on my own in the world. All to put me for sale to the long list of cluster B’s searching for a kind forgiving doormat, punching bag that already knew the protocol. Adore your abuser, praise your abuser, only allow your abuser to be validated, and if none of these things are accomplished you would be devalued, excluded, and punished to teach you a lesson. While the innocent develops fear, obligation and guilt. If any type of disagreement would occur or you forget to ask how high to jump, the abuser would run to all who would listen to offer favors, praise, or concern for you in which was where their talent resides, with acting and blatant lying. This is all to fulfill the proud high of walking away adored and their target walks away quietly to lick the freshly gutted wounds.
The tough realization is once you experience one in youth, you will be a magnet to them in your adult years. SELF LOVE is the key to escape. Don’t be so forgiving and kind, make yourself a priority more often than not.
The old saying is all too true, confidence is quiet while the toxic insecurities are loud. Their abuse tactics are obviously obtrusive to the level of their true self esteem.
This condition isn’t about admiring their reflection. Yet it is also a myth that it is a personality disorder or mental illness. They are not born with this, it is an attribute. (Ramani Durvasula PhD).
All one has to do to discover any of this toxicity in your life is pay attention to detail. Are you particularly exhausted after spending time with someone? Do you feel yourself losing energy? Does your loved one have to have what you have? Steal your ideas while making them their own, even to your face? Must live and go through what you do? Sure to let you know they make that run a second quicker than you? Construct unnecessary drama? Highly judgmental? Talk incessantly about a minor annoyance while brushing off your life and death obstacle? Turn truths around in their favor while screaming they are remembering it correctly, in fact it can be quite different from what actually happened. All of a sudden become close to your arch enemy? Mirror your personality? Making the effort to be intentionally invalidating? Icy cold smirk when you are going through something difficult? Inability to show empathy and if so, only done so for an audience? Always finding fault in others? Inability to take genuine responsibility? Making a new relationship perfection while finding so much fault not soon after? Any and all negative thoughts and feelings are someone else to blame? Must they have perfection and control when dealing with people? Treated like gold at a time all to discover later they needed something? An absence of real compassion? If you know someone who is constantly passing judgment or criticizing others, this is also a sign of poor self-image and possibly narcissism.
You are driving them out of their minds. If you have nothing to offer you won’t suffer, you won’t be targeted. To wrap up all the long winded advice that is out there, your genuine confidence, calm demeanor and the natural desire to rebel against their wishes to do your own thing is making yourself one big bullseye. You will be accused of the worst thing imaginable while they will try to hurt you with what they learned will hurt you the most. Deep down these people are living in a constant state of fear of rejection, repression, or ridicule. They are the biggest cowards you will ever know as they stick with a lifetime of tactics that used to work and stare you down. As you feel worse and worse, the narcissist feels better. In fact he or she feels stronger and more superior as you feel your anxiety and depression grow. It makes them feel as though the mask they wear is real. All from being dysfunctional and disordered.
Experts say the trick is to become boring around them, or disappear. No contact whatsoever. Speak the truth. Shut out who you have always spoke to that is affiliated with your abuser, start a new life and share it with only the ones who have been consistently trustworthy. I started with reading the book Playing Dead. I took it as a noble beginning with satire. I won’t fake my death, but after an eye opening life time of the attempted beat downs and realizing I like myself more than I ever have, I’m ready to face my reality and be the bigger person for myself.
INTERESTING NARCISSISTIC ABUSE SURVIVOR SHARES–
From this doctor, and when your personality is ‘mirrored’…
The mimicry is very irritating. They usually have no idea that they’re doing it. It’s like a child with an adult they admire such as a mother or father. It’s best to ignore it, especially as it’s quite a good sign where narcissists are concerned. It means they have a crush on you and that means you’re in a position of power as they’re in awe of you.
Don’t agree~ experiencing is believing. If it looks like a duck, walks like a duck, quacks like a duck, its a duck.
The phone rang on that day of August 16, 1977. It was my beloved mom “pumpkin?” She knew I was probably doing what I really was doing which was crying my eyes out that my other idol, Elvis was announced to be dead.
As I held the phone to my ear I dragged the 120 foot long telephone cord from the kitchen to my bedroom to tear off my posters in anger that they were implying him of dying from drugs. I was angry he left us.
It really is a shame the man never met me. I know many fans think the same way, but it really is a shame. I am positive he would have seen the true love I have for him not only as an entertainer, but as a person. Wishful thinking maybe?
All who know me say I would have passed out and missed it. Possibly.
I do know this.. True music fans will tell you they know what he did for music in 1954. In fact, it’s a big sign to me if someone disagrees. You don’t have to love him, like him or even listen to him. However if you don’t know what he did for music, the brunt of angst he endured for blues, rock n roll and country, along with the doors he pushed open for black musicians, then you don’t know music like you think you do.
To again celebrate living through my illness, and the legacy of Elvis Presley, he will be on my mind as I take an upcoming trip to Nashville and the Tennessee mountains. Those hills sure can sing a story that will forever live in each and every one of us.
1957-the first moonwalk in dance…
Every time I enjoy a new creation in blues or rock n roll, I think of him. I think of how my parents consistently made the comment, “We would never see something like him again.” What he did for all of us, others can attempt to emulate but all know, the originals can never be replaced.
Just as the first with everything else in rock, Elvis did the first UNPLUGGED.
ONE ARTIST HAS BEEN PUT IN ALL FOUR GENRES OF HALL OF FAMES. (ROCK N ROLL – GOSPEL – BLUES – COUNTRY) ONE ARTIST HAS SOLD OVER A BILLION RECORDS.. ELVIS.🎼
Just as my Genesis blog shared with you, I found inspiration once again. I don’t know where this desire came from. It could be my dads creative artistic genes in me, my personality that screams aquarian, or the fact that I have been a writer for as long as I can recall. I always have lived for inspiration, originality, and unique deliveries to thoughts and learning, but I’m also a criminal justice junkie. I’m not the type to watch tv, although I do follow certain cases that leave us all with questions. I found myself at that moment once again as I cried my compassionate heart out.
I was watching the Dateline case of Laci Peterson. The story we all know. One of those in which we all witnessed cruelty, loss, and of those rare types where you can’t find an enemy. The kindest of kind being unfairly and selfishly taken too soon.
Now, I know every time I take part in reading or watching details on the case I am going to genuinely suffer with listening to Laci’s mom, Sharon Rocha. I can relate to how she feels; her devotion, and her love. I am a mother as well.
Like a solider walking off a battlefield without limbs telling of the details, Sharon is a warrior. Mrs. Rocha is that beaten lamb. I watched her nervous hands rub together, and her eyes dart around in fear to trust not even her own, she has endured, survived what all mothers fear the most.
My intuition was telling me for years since my surgery and recovery, I am meant to take part in some sort of selflessness. I had to have survived what I did for a reason. No, I don’t think everything happens for a reason but when it comes to life and death, there is usually a pivotal moment for why it transpired. My dads exact words on his death bed in the hospital besides, “Please get me a weed Dondu” (a cigarette), was “People are supposed to become better from watching death and suffering”.
Anyway, it could not be writing I told myself, even with all the compliments I am truly touched to receive, I am my own worst critic. We all carry some scar buried deep from childhood to form us into the adult we turn out to be. Even though my mom praised every one of us, I do carry a beaten bat that questions every piece of art I attempt.
I pondered the incontrovertible doubt with finishing my book or any book, I continued to make money writing in the most simple way I knew. Real estate, and tourism. The work provided some light to that literal black hole in my brain while my soul still filled with the desire to perpetuate, save, or assist someone who is in need. Sharon Rocha has done that for me. She woke me up so to speak, and I understood every single word as if I was inside her as a Siamese twin. Sharon was speaking of the hope she always carried in finding her Laci, “I brought her into this world, I should be able to feel when she left it” she shared. The day that beautiful young girl washed up with her son, Sharon said she was hiding in her house because she could feel it. That day was the day.
Motherhood is the most powerful I have personally ever witnessed in my lifetime thus far. I remember once when my younger sister was in California as a teenager, my mom fell to her knees knowing with every fiber of her being something was happening to her. An hour later, she said “It’s okay, she’s safe”. I was bewildered beyond comprehension. My mom always said “Someday when you are mature you will have that ability with your child too”, yet I still believed her witch blood line was where it originated. Now when I question my daughters safety, I listen to myself. If I don’t feel that panic, I know she is safe. No, I’m not a witch and neither was my mom. I am now mindful as that adult she once couldn’t wait to see but missed out on, that my mom was an empath and a mother. As am I.
My daily wish until the day I pass will be to look in my moms eyes, talk with her. Now as I still travel this earth I will continue to cherish every moment I can hold my daughters hand and pray it will end the way it is supposed to end, with myself passing on to the next life first.
Even though I have always been a children’s rights advocate in marches and writing senators, I am now a proud volunteer and writer for Missing & Exploited Children Organization hoping to be of some help, all the while embracing allegiance in print and spirit Sharon Rocha and every mother who continues to find the strength to walk in her shoes.
“Blessed are those who mourn, for they shall be comforted.” – Matthew 5:4
Today is a new day for me, in more ways than one.
After we had a stop in our hometown for a handful of months, we restarted our lives back in the area where we feel our best. Going back to our work, our lifestyle and health regime. It wasn’t easy since I had such a good time with a couple friends and reigniting the closeness with a couple siblings. All rewarding, along with the additional feeling of experiencing what can’t be replaced, family. As well as having family in a dear friends world.
After a 32 year marriage, we bought a home for the first time. At first thinking we were building a future of real estate and family nearby for our daughter in the event of our impending deaths, which had then spiraled into an investment. One that was way too extravagant and everything we found the expensive, vagabond way to be what we did not want. The most stressful part of living in the north was approaching getting rid of a highly competitive piece of property, as my younger sister prepared to get married.
There truly is a torturous tug of war to deal with a family of your own and moving very far, all the while wanting to be there for someone you have grown up with and is important to you. It gave an all new imperative meaning to the term ‘there’s a difference between wanting to and being able to’. Even though I warned her if her wedding date was changed, I wouldn’t be able to go, that is indeed what happened. It literally broke my heart.
I haven’t seen my youngest sister since my dad’s funeral in 2001, as we each traveled our own beaten path, but I love her the same as I did when we ran by each others side as children. It was one of the hardest things I had to endure to not attend. I imagined my mom telling me on her death bed that I was to always be there for my sister since I never judged her decisions. My mom’s words are to this day my bible. As I reached out to her on the morning of her big day I was standing at my mom’s deathbed listening to those words while feeling joy for my sister’s excitement. While I floated in a dark cloud for days over the impossible chance to arrive, as she was understanding and loving about my not being able to make it, a dark monster from my past that blatantly admits to living in severe jealousy regarding my life, poked at this hurt bear. My sister was the only one who mattered and yet the toxicity of my past reared it’s ugly head all to achieve some sort of sick fulfillment since she lives an empty demented hole of a facade.
I have discovered with age, cancer at my trachea, wrapped around my vocal cords all the way to my thyroid, while enduring menopause we all find out who truly counts, what sincerely matters. Unfortunately for me, I have had a heavy load of outsiders that know nothing about me continually follow my trail. Don’t get me wrong, many from my past I welcome. The ones who beat me up to feel better about themselves or make assumptions about me without asking questions to get the truth are the ones I am fighting to rid myself free from. What some of these old friends don’t realize is I was still speaking to them due to my loyalty from our past, my compassion for the unhappiness they lived. Nothing more. A couple of them came to me only because I was there for them. It wasn’t because they felt any loyalty, devotion, or respect. It was because I listened, I gave feedback. They had that one person to take their dysfunctional side.
I have finally approached a side of myself my mom never wanted me to divulge. Bitterness for the selfish.
I actually asked a close friend recently “is it me that these people from my past are being extracted?”, She eloquently yet firmly shared with me that what was happening should have happened long ago. I am not accustomed to such treatment since I have grown past this group. It was an eye opening moment for me. I am not without friendships, I am without judgmental burden.
My sister and I will always love each other and be in touch. Growing into adulthood, and approaching ones 50’s has been a series of adventures and celebrations while a rocky road of epiphanies. While also proudly walking away.
(Thank you, cancer.)
The moment you feel like you have to prove your worth to someone is the moment to absolutely and utterly walk away.
We are stars wrapped in skin. The light you are looking for has always been within.
As we all tend to do with forgetting our blessings, while I made a grumble about the things I deal with since the surgery from cancer my sweet daughter that is now becoming quite the replica of my mom, sternly told me, “Mama, the doctor said you were six months away from suffocating in your sleep from that tumor. I remember! I just don’t like to remember. That’s why you should be glad you did the surgery.”
It immediately shut me up, woke me up, slapped me while calling me silly.
Just like my mom, she made me think. I honestly had apparently blocked out of my mind that I was told of that close call, and it took me back where I should have never left.
Ever since I walked around sick for ten long years traveling to that first visit into Sloan Kettering, and especially after the surgery and recovery, I have worked hard daily to be healthy, positive, and happy for the small things. I’m right on schedule. Those two years they told me it would take to become accustomed did in fact take two years.
Doctors have told me I would most likely be overweight, and yet I lost 20 pounds, the right way in the last few months. I’m told I have lost the one thing a woman needs to control her moods, I feel content pretty much every day. My cancer team tells me I have only three years in before I’m considered a cancer survivor but I have the faith and hope to get me to the end. Even if it takes five more years.
So let me complain a little, will ya kid?
In all seriousness, while you may not hear me refer to my sickness as a gift, it did definitely reiterate what my mom taught me in how I would know myself better than ever in my 40’s.
We all can make a list on where we fall short when such tragedies drop into our laps since every single human being that have a conscience anyway, will inevitably dissect themselves. Mine was evidently the lack of memory from early menopause that the surgery put me into, (whoops!) Or it’s all the enlightenment I have gained in which made me a better person.
Luckily, I am here to have discovered each year should make us better, not bitter. That is the end result goal. It was most certainly what I was taught anyway.
The entire experience woke me up to the damage I used to permit into my life, thinking I was being loyal and loving, while in actuality sacrificing myself all to have the company I was accustomed to, or to avoid rocking the boat. Those last four words are exactly where my charming political side comes from, not because I am being someone I am not. I don’t fear discord or confrontation, I just have enough of a mixture of both of my parents in me where to me, life is more enjoyable with simply laughing, creating, exploring, being honest. I have no interest to repair a person’s conflict resolution skills. If someone in my life cannot bring themselves to accept responsibility for their end, I would rather let them go rather then convince them. It’s not my place.
The entire experience woke me to stop being religiously appropriate withholding my love and belief for God. I’ve always believed. I’ve always prayed. Ever since I was a child, many prayers have been answered, when I was begging for answers to the need the answer always arrived. I’m a true Christian in which empowers me; I won’t judge your beliefs, race, sexuality, while shoving my own beliefs down your throat. I was not brainwashed. I don’t believe it’s a lack of intellect. I don’t consider being a Christian joining a cult. It’s my personal belief in that particular higher power that some others have, while some others don’t. The latter is one of the many reasons why I can appreciate diversity.
The entire experience awakened me to the act of over indulgence. Unfortunately, a fact my mom told me many years ago was once again proven to me to be true.
“Regardless of how many good things you do in life, people will never forget you for your mistakes.” Or as a good friend added, “regardless of how many good things you do, you will be remembered for that one mistake.”
Another favorite true quote of my moms; “You can be the most beautiful person in the world, but you will look ugly while drunk.”
Got the t-shirt to all of the above, many a dresser full, actually.
So this isn’t about my not letting go or looking for pity. Anyone who truly knows me can tell you I despise both. However, if I can be a friendly reminder to the ones who read this or the ones who ask questions, believe this about my journey:
I plant and care for beautiful flowers daily now where before I forgot to keep them alive. Approaching ones mortality will give you an innate sense in a need to keep all other living things in a thriving mode.
Regardless of my events in a day, I care about my bird houses being full of seed so they can eat.
I live being busy and productive, as opposed to only busy.
I won’t buy cigarettes, even though I did for 24 years.
I won’t eat anything with hydrogenated oils or aspartame.
I’m choosey with meats. (Grass fed only).
I won’t touch liquor where before, it was all I socialized with.
After withholding tears most of my life, I learned crying and mourning over any loss, would cleanse me. When I needed to let go, I did.
I found the answer to my 20’s, the gratitude in the quick era of my 30’s, while finding myself in my 40’s.
I now know who took advantage of me and whom truly care about me, while the same goes for my end of relationships.
I refuse to go backwards in life. I will not tolerate repeats of any kind.
I still suffer with Lyme symptoms, aftermath of having deadly cancer at my trachea, brutal insomnia, chronic pain, as I continue to walk, work, and thinking positive.
As I worked my writing job, took care of my family and my health, I happily tucked myself in to a recluse of desired quiet privacy, and studied everything and anything I ever questioned in my life.
I exercise, smile, and sing more than ever before.
I discovered your child can have more wisdom, and listening skills than yourself, and I am confident enough to admit to it.
AND EVERY SINGLE ONE WAS DUE TO SURVIVING CANCER, WHILE ACCEPTING THE PEACE WITH THE UNKNOWN ANSWERS THAT WILL ALWAYS HANG OVER ME.
Simplicity. I’ve finally arrived to where I live what I have always craved. No, cancer wasn’t a gift, it was soul searching therapy that brought me to the other side of light.
Writing while listening to music works the logical side of your brain, to give your emotional side a break.
What I would write to my mom if she were here to read it since I know it would make her laugh and smile…
Mom.. I forgive you for always picking me up at the many Elks, and other Jamborees when I was relishing in my Urban Cowboy moment with Dad and Uncle Mike playing music, all because you said “it was dusk and I was too young.”
Mom.. I forgive you that you reminded me how you’d happily take Drew off my hands if I didn’t stop college and stop my car salesman job after giving birth to her because we were ‘blessed enough for me to be home with her.’
Mom.. I forgive you for telling dad he “should’ve killed the spider with his purse.”
Mom.. I forgive you for making me the first girl in shop class with the boys because you demanded it to the principal, after putting Ms. Goslin in her place for how she spoke to me.
Mom.. I forgive you for being appalled I didn’t have earrings and lipstick on when I checked into the hospital to give birth, as you held my hand.
Mom.. I forgive you that you didn’t want me in music because of the lonely lifestyle, so you suggested auditioning for SNL instead.
Mom.. I forgive you for calling me ‘your pumpkin’ my entire life because you pushed out this 10 pound baby naturally.
Mom.. I forgive you for being supportive, paying for a huge wedding, and giving me the option to marry the love of my life, even up to the point when I panicked in my wedding gown.
Mom.. I forgive you that as I relished in holding my newborn Drewbabe in the hospital you said “She’s absolutely beautiful, well..this is the first day. You’ll live in fear from this day on until the day you’re gone.”
Mom.. I forgive you that I have yet to find you wrong on anything and everything you taught me.
Mom .. thank you for always forgiving me.
Mom, thank you for allowing me to mimic you on how to be a wonderful mother, always speaking and living 100% honest. Most of all, for loving me unconditionally.
mom’s favorites, for mom❤️
As another year hits, I see many gifts I would love to take to my mom for Mothers Day. More importantly, how hugging her and talking with her would make me feel and fix any problem I have.
I miss my mom and my dad every day, always talk about funny stories of them, and say a prayer in a moment of silence. Although none of those things will ever change the fact I lost my best friend, my idol, my therapist, my mother. She will forever live in me.
Listening to Willie Nelson I think of how much mom admired him. The only country artist she enjoyed country music from. One year she was looking for a genuine Willie concert t-shirt of a particular year. The loopholes I jumped through, the bids I placed to find it was all worth the look on her face.
I wish I could have another chance to find something she wanted.
The inevitable loss of my mom was a dreaded lingering spirit hanging over my shoulder my entire life, and now I am living it. Any and all who know and love me always knew it was my greatest fear. I am here.
Time makes no difference when the person was that important.
I know her well enough that she would tell me I’m doing a good job. I am a good mother, and not a ball of depression for others. I relive the happy times, and when I need to cry or mourn I keep it to myself. Just the way she taught me how she did it.
At the end of her life I asked her, as I was overwhelmed with weakness, “Mom how will I get through you not being here?” I was sincere in needing to know what to do. Her green eyes looked into my green eyes to matter of factly state, “It’s a part of life. You lose me, Drew loses you. You have to get through it, pumpkin.” That was just like her thinking of others. I feel selfish now to think of that question, her being on her death bed, giving me coping advice. I’d give anything for her to know me as the adult woman I am now. Closer to 50, unselfish, private, just as she so eloquently lived and taught me to turn into someday.
If you are one of the blessed to be my age and still have your mom; get up early, let the sunshine hit your face, fill your car with whatever she would love, and go look into her eyes. I promise you, the day will come where the latter will be what you miss the most.
What’ll I do
With just a photograph
To tell my troubles to?
When I’m alone
With only dreams of you
That won’t come true
What’ll I do?
I hit my fifth year this month.
If you have read this blog from THE BEGINNING then you know, this an important time. From what I feared the most, the devastating effects from Multiple Sclerosis.
Odd, isn’t it? I feared MS more than any other health crisis. I had fear for my family more than myself when the jeopardy came to cancer forming as close as a third of an inch away from shutting off my trachea. I know that sounds ridiculous, but no two people are the same with MS. One can live with sensory symptoms only, the other can literally fall apart the first year.
In my personal story, it was guessed to be brain cancer, then I was originally diagnosed as probable Relapsing Remitting Multiple Sclerosis. Yes, the following doctor stated I was a classic case of Lyme disease. Then Sloan Kettering stated the brain lesions could be from misdiagnosed cancer. My common sense knew what two neurologists endured with studying the brain, so I held on to the original neurologist’s quote, “If you don’t have any disability in the next five years, you never will.” I researched that fact and the Mayo Clinic confirmed.
It’s felt that most people experience the severest disabilities of MS within five years of diagnosis. After that point, their disabilities don’t continue to worsen significantly. Therefore, if no additional disabilities appear within the first five years, then they are unlikely to occur in the future. But nobody can predict what will happen to any one person and so many things can have an influence on that. It’s been proven over these short years that doing all of the “right things” will increase your odds of a better outcome. http://my-ms.org/ms_prognosis.htm
Just as life famously throws roadblocks at us, I never did get a concrete answer. Although, I did have that cancer which was blocking my trachea and wrapped up around my thyroid, removed. I went on with life while everyone thought I lucked out, and in the back of my mind I counted the months to hit my fifth year mark for the parole board and probable RRMS.
I was lucky enough to meet people with MS. They were walking, talking, laughing, with eyesight, and that monkey hanging on their back, just like me.
To this day when I look in the mirror I know how destructive I have been with my body in my short life. I marked those days off to five years as though I was on a maximum penalty prison sentence.
As my husband lived in denial, my very mature daughter is the only one who knew I lived with an inner countdown. While she doesn’t believe I carry MS, she is beyond compassionate, empathetic and positive as always.
During this time two publishers and an internist doctor have pushed me to finish my manuscript to tell my story, along with the vital things I have never even shared on this blog. I didn’t feel ready. I didn’t feel as though I would be fair to the many people who live with MS, cancer, and lyme without an ending. I want to help, not hurt.
What I have never shared with anyone is the fact I live with many symptoms of MS. Yes, MS and Lyme are almost identical. The symptoms I still carry could be the positive blood test from Lyme as well, but just as most in the medical struggles have learnt as they were cheated at this card game, you can be bitten by a lyme infected tick and it will ALWAYS show up in your blood. I grew up on a farm. There are a great deal of debates with Lyme in the medical community due to insurance regulations, as well as a lack of knowledge on how to treat chronic Lyme.
I have always listened to my instinct, and when I do, I am never steered wrong. I’ve paid close attention to my body this past five years. To be blunt, and more importantly with myself, I have some form of something. Whether that’s benign, sensory only, around the corner from destruction, or the aftereffects of cancer, I have something. And that’s exactly why I play it safe and continue taking LDN. Only people who live with me know I take that pill religiously. LDN – the low dose naltrexone I detailed in this blog. Not FDA approved but a common, effective tool in the fight against this mysterious disease. It’s a proven fight against Lyme as well. Some doctors believe in it’s ability, while some demand to know how I obtained it. I also know the LDN makes a difference since I have experienced what it feels like to run out of the pill.
Even though myself and my family enjoyed living in the south for many reasons; The school our daughter wanted, the beach, the consistent sunshine, (sun, a factor in fighting MS), and the doctor that found my cancer right away, my job, away from the stress, gossip, and falsehoods we were accustomed to from our hometown. I had one more personal reason; fall apart in private. I expected it to happen. I wasn’t so sure I would hit the five year mark free from disability. Due to that blessing, I have taken my gift seriously and taken care of myself.
This blog is about my acceptance and to not discourage the reader to not listen to your doctor. There are misdiagnoses in this world, my cancer was missed repeatedly, but not all doctors have to be discredited. The sensory symptoms, fatigue, double vision, memory issues, migraines among other things, that I may not have every day, but still carry, aren’t from the cancer they removed. Not from the early menopause my surgery put me into, just my luck of the draw in life, or due to having 7 inactive brain lesions. The symptom list is the same as listed on having brain lesions in ones brain. Then again, possibly, I carry all three?
I may never know and I quit caring to know.
I will continue making plans with my family. Laughing so hard it hurts my ribs. Exercising to stay in shape. Relish in my hired writing assignments. Eating as mimimal as possible. Feel gratitude towards real relationships and those who are astonished by how healthy I’m told I look.
Even though I live with continued trips to NYC for tests until I ironically hit my five years to be considered a cancer survivor, and my dear friends have empathy for the fact that I can’t ever be insured since I had cancer. As they say to me, “That’s awful, I am so sorry. It’s as though they know how you will die.” It’s ok, I still have no idea. There’s two other high possibilities.
I lost my mom on December 22nd. I think of her as I type this with my sensory symptoms, knowing she was never wrong. She repeatedly warned me, begged me to be good to my body, to treat it like a growing plant. Now I not only know I screwed up in more ways than ten by not listening to her, I also know at one time I walked around with lyme, had the close call of life and death cancer ripped out, as I continue to wish the RRMS the best. Isn’t that what every obstacle in life boils down to anyway?
**UPDATE: I STILL TEST POSITIVE FOR LYME, BUT I’M TOLD BY TAKING IT UPON MY OWN EFFORTS, I KILLED THREE STRAINS WITH COLLOIDAL SILVER, MEAT FREE DIET, DETOX AND HYDROGEN PEROXIDE BATHS. THE PHOTOSYNTHESIS MACHINE IS NEXT FOR THE LAST TWO STRAINS. TRUTHFULLY, I CARE MORE ABOUT MY CANCER STAYING AWAY. THE LAST TWO LYME STRAINS DOESN’T AFFECT ME. TWO MORE PHYSICIANS I HAVE DEALT WITH BELIEVE I WAS IN FACT, MISDIAGNOSED WITH MS.**
Okay, I am completely aware that the people who follow this blog and especially the ones who personally know me will spit on their computer screen with laughter when they read this, but you may just reconsider the possibility of what I am about to share.
The common person may not know this, but in the Rock n’ Roll world, it is an inside passing comment on how to escape the industry and make yourself more money is ‘to do what Elvis did; fake your death.’ Yeah, yeah you’re thinking, ‘Oh my god she is so obsessed with that man she thinks he’s alive!’ I wouldn’t go that far. I don’t necessarily think Elvis is living, but I do question, when up late at night and tired of writing jobs, to delve deeper into the research that he more than likely finally escaped, and since I’m an Elvis connoisseur I pray to god he had done just that.
Let’s be honest. People from the 1950’s will tell you there was an enormous amount of pressure on Elvis Presley, which was expected from him until his ah hem, cough, death.
When he first came out, Perry Como and Frank Sinatra ruled the charts. Yes, black musicians were doing the blues, and Elvis loved the blues along with choir music, but actual rock didn’t get started until the ‘white guy that sounded black’ hit the scene. Elvis was never a songwriter, but all of his songs were chosen and performed in the way they were by his suggestion.
Eventually the Elvis hysteria was so out of hand, he was banned, accused of being satanic, beating his mother, a sexual deviant, a bad influence to the rise in juvenile delinquency. In those clean years one can imagine how shocking his performing, and sexual suggestions portrayed him to others. Of course, all lies about this spiritual man.
The controversy then grew to where his records were being smashed, the parents wanted him away from the eyes of the youth. He was being filmed from the waist up, his concerts were lined with police officers, ready to arrest him for simply dancing. All the while, his influence caused John Lennon to start a band with his buddies so “they could meet Elvis someday.” One influential example of far too many to list.
Finally in 1977, times were bad for him. This is all verified by close friends, his nurse, and family. Don’t worry, I don’t give a shit what the Memphis Mafia has to say since they sold him out for a book deal back then, and one of the things that inevitably led to his depression. Elvis was addicted to uppers and downers to meet his 350 day year concert schedule, his loser manager had a gambling problem, and took 50% of Elvis’ earnings for his addiction. Elvis kept him from his legacy of old school loyalty. Same goes for his bodyguards, staff of men Elvis ran with, known as Memphis Mafia. Elvis saw them as family, best friends, karate comrades. After Elvis gave them not only a job, a house, many cars and security for themselves and their families, once the so called friends were offered a book deal to sell Elvis out, they took it.
The book was released after Priscilla left Elvis for his karate companion, Mike Stone. It was a crushing, life changing time for him.
As for Priscilla, I won’t defend Elvis because I have immense respect for her. That woman has always shown the highest form of love, respect and class regarding Elvis, even though he publicly cheated on her through their entire marriage. Nevertheless, Elvis grew into a deep depression.
As Elvis grew more quiet, it is reported he repeatedly made the comment, “I am so sick of being Elvis Presley”, as he became more fascinated with his love of Numerology. The compulsion with numerology can in fact make one become reliant on it. I have done it myself. I wouldn’t say I am at the level he was with it, but I do take to heart what my numbers tell me. Numerology will in fact teach you a great deal about yourself. Everything will ring eerily true. It’s not hocus pocus, it’s not a cult. It’s a science with numbers of your life. Here’s the spooky part, when I learned Elvis’ numbers had his numerology advising him to give up selfish possessions and live his life for another in August of ’77 some of the compelling evidence made much more sense.
*Elvis lived in torment with survivors guilt from losing his twin brother, Jesse Garon. It was a lifetime spiritual quest for him to understand why his twin died, and he was given such an extreme life to uphold.
*Elvis had a grueling time with surviving the loss of his mother. All who knew him said he never recovered or came to any peace with it.
*Elvis canceled a tour, for the first time in his career, a week before his ‘death’.
*Elvis Presley is the only known autopsy with missing pictures, tissue, and organs. (The recent AUTOPSY program regarding Elvis used medical records from his history.)
*The blood type listed on the short two page autopsy papers is different from the blood type Baptist Memorial listed as Elvis’ blood type for a liver test from 1974.
*Elvis’ favorite books, jewelry, and pictures of his mother disappeared.
*Life insurance policies on Elvis were never cashed.
*Elvis Aron Presley, his middle name is misspelled on his gravestone. (AARON is not how it was spelled on his birth certificate, marriage certificate, RCA contract, ARMY records, drivers license.) Legally, that’s not his gravestone.
*The picture of Elvis in his casket was a replica of him at the age of 25, while his death certificate read 170 pounds. Elvis was an obese 250 pounds in the end from depression, and 42 years old, not his youthful 170 pound 25 year old self, as displayed in that casket.
*Every passing person in his quickly handled funeral made the comment his corpse looked like a wax dummy of him with a pudge nose, arched brows and smooth hands, which he had none of the latter.
*Fifteen men struggled to carry this supposed 170 pound shell while there was mention of the cool air coming from the coffin. (Air conditioning keeps wax in place.) Linda Thompson, one of only three women he lived with even made the quote, “It’s amazing what they can do with wax nowadays.”
It is well known that Elvis left everything, including Graceland, to his divorced wife Priscilla, in his will. His pig greedy manager Tom Parker and best friend, Joe Esposito, and Priscilla who would have her daughters security in place, helped him escape the curse of fame. The disloyalty of who traveled with him, depression, drug addiction, and being imprisoned in his own home.
Think about it? Colonel Parker, his manager, continued raking in the money off of Elvis until that trash carnie croaked. He was all for it. RCA recently made the statement, “Elvis has yet to be beat in record sales”. The man stopped recording in 1977! Priscilla never said a bad word about him while she and Lisa Marie prepared Graceland for the fans. It is the number one visited rock n roll destination while Elvis Presley Enterprises make a mint to this day. (One of the reasons I’m against buying all of the Elvis junk. I admire you Priscilla, but you’re rich enough.) Joe loved Elvis for who Elvis was, not what he could do for him.
SO… there’s one picture that is supposed to be Elvis from 2001. It came from a doctor that prescribed him pain meds for arthritis. This working physician, wants no interviews or money, and doesn’t want to sue anyone. However, he owns jewelry that the log listed as missing in 1977. And in a book he wrote, supposedly with Elvis’ blessing, which took me very long to obtain, holds letters “Elvis” wrote the doctor about living with guilt to leave his fans or anyone who loved him for him, heartbroken. As insane as all of this was to me, I have studied Elvis’ handwriting since I was a little girl. The letters are identical to his handwriting, and when tested by three handwriting specialists, one formerly with the FBI, all three agree they consider it an identical match. I also know Elvis had a peculiar collar bone that stood out, a broken pinky finger, many details that match this elderly gentleman WHO IS HOLDING LISA MARIE PRESLEY’S SON??!!!
Come on, does this add up?
If this were a scam wouldn’t there be pictures of the elderly man looking at a guitar, staring off into the sunset pondering life, sitting by a lit fire with a numerology novel? Nope. Just this one picture. Now the doctor won’t talk about it. The book is off the shelves, (I found mine in a Goodwill in Colorado Springs.) And the only person who can prove us wrong with her DNA? Lisa Marie. She tells every asking person to ‘fuck off.’
If it’s a facade, I agree with her. My apologies, Lisa. If she and Priscilla don’t want to mess up the payroll, I say alive or dead, he earned the right to rest in peace.
Long live Rock n’ Roll.
“ELVIS KNOCKED THE DOORS DOWN FOR ME, I HAVE NOTHING BUT RESPECT AND LOVE FOR THAT MAN.” ~ JAMES BROWN
“BEFORE ELVIS THERE WAS NOTHING.” ~ JOHN LENNON
“Elvis is the best ever, the most original. He started the ball rolling for us all. He
deserves the recognition.”~ Jim Morrison
“Describe Elvis Presley? He was the greatest who ever was, is or ever will be.”
~ Chuck Berry
“Without Elvis none of us could have made it.” ~Buddy Holly
As promised here’s a recent bandage free shot of the incision. I was sickened to learn of other trachea, thyroid cancer patients to not be told of any facts.
So here’s the info I was given.
The initial bandage, after stitches are removed, should be kept on for ten days until it falls off on its own or is dirty and needs replaced. Do not let your neck be saturated in water or let a shower head hit the incision.
Since you can’t look straight up for two weeks after the surgery, I bent my head over under the water in the shower to wash my hair. During recovery be sure to have heat packs for your neck and shoulder pain.
After the bandage is off, apply bacitracin for one week. The doctor told me to wear a scarf to protect it from the sun until it’s only a scar. Then start using Vaseline on it to help it heal and fade.
No surprise there. My feminine genius mom had me put Vaseline on and around my eyes since my teen years (& I have ever since).
It was her daily ritual taught to me, and I taught to my daughter. The goal is to keep your eyes youthful and refreshed. It supposedly keeps wrinkles to a minimum as a person ages. It’s also the ideal replacement to mascara, since mascara eventually makes ones eyelashes fall out with age. Vaseline keeps them lengthy if done consistently.
Now, it’s the suggestion from Sloan-Kettering for a slit throat.
What the.. Will she ever be wrong?!
~Recover, Renew, Reflect, Regain, Regrow, Reconnect, Relax.~
My pathology report is back. Dr. Morris said there were no surprises. All of the cancer was on my thyroid and the small spots near it have been removed and we were lucky because usually cancer nodules fall apart during surgery (coincides with my theory of “air hitting cancer” hmmm…) but mine was protruding from the thyroid while attached to my trachea, so it all came out together.
Thank The Lord above.
The report also showed my ole beloved doctor was mistaken. I never had Hashimotos. Dr. Morris said, “Your thyroid was not functioning at all. You were sick or symptomatic because you had a cancerous tumor on your trachea while the cancer had spread to your vocal cords, while wrapped around my thyroid.. and it’s the only cancer that is slow growing, had it not been found it would’ve closed off your windpipe.”
Well. I’ll always be thankful for meeting my former beloved doctor. Not only was he the first doctor to act on my neck lumps, he gave me Cytomel. I’ve said it before and I’ll say it again, Cytomel in 5 mg (3 times a day) and Low Dose Naltrexone 4.5 mg, is what kept me physically going this past year.
Due to there not being any cancer in my lymph nodes, therefore not able to spread elsewhere, I do not need much of the radiation treatment. Can you imagine the state of happiness I’m in? 🙂
I can’t say or write enough how sublime it is to awake to no symptoms after wondering where they were coming from for years.
I do have to head back to NYC in June for a check up on my neck incision. Convenient timing since I’ll be headed to Pennsylvania at that time. I also have to check in Sloan-Kettering once a year to be sure no more cancer pops up. After 5 years of those visits to NY, I’m finished.
So, for anyone searching for some positive feedback on Trachea tumor wrapped up into Thyroid Cancer, I’m your example. Don’t panic if you find lumps or if your biopsy comes back positive. There really can be a happy ending! They just can’t tell you the entirety of your situation until after the surgery. They can’t give you a proper stage until they’re in there as well. Whatever you do, no matter how tempted you are, don’t google Cancer!
*Remember: your body will react to what your brain tells it.
Health is the goal. Not feeling worse.*
The people posting those nightmares are reaching out for help. What happens to them does NOT mean it will happen to you.
One last thing, I may not have understood much the Endriconolgist said to me but he found my cancer. The thank you card I sent him is a joke to what he and the surgeon deserves.
In end of this seven year ordeal, I’ve regained my belief in doctors. They’re just like getting to know people. One may be selfish, one may use and abuse you, another may be a pompous ass but the last may be the ying to your yang.
Keep the Faith. Be Well.~
Well, I discovered why a person should never do basic research. Google or Bing the topic in question, hit Joe or Janet Schmo opinions. If you do, you’ll feel like Debbie Downer.
I know it’s hard to believe but all of my research have always consisted of medical journals and a library. As well as always joining support groups. I have faced such serious assumptions the last seven years, I have never felt safe with wasting time reading anything basic. Plus, I’ve never been a parrot. What happens to one person doesn’t mean it will happen to me.
In fact, my beloved doctor and I had a discussion on this topic last year. I mentioned how I can be irritated with the comment, “don’t read so much”. (I mean..is there such a thing?) He said the reason why was so that I would not do just what I did, read blogs by people who are having a tough time he added, “People who are fine don’t care enough for others to blog, so you don’t really read about the success stories”.
Boy is that the truth.
I plan to change that customary situation. Just as the misdiagnosis of a neurologist writing in my file, ‘POSSIBLE RRMS’, while he put me on Copaxone. A misdiagnosis that is common in the Lyme world. The same with my sharing the dreaded colloidal silver and hydrogen peroxide baths to cure Lyme. An LLMD would find insane. Although, as I stated before what worked for myself may not work for you. However, why not pass it on? What if it does work for you? You’ll save yourself years of pain, doctor appointments, emotional anguish with the brain lesions, money, and abusing your organs with over usage on ineffective antibiotics. That’s why.
I don’t have to know you if I can help.
Therefore with the intimidating trachea tumor with Cancer spiraled my ole thyroid, I plan to recover, adjust to my thyroid replacement Levothyroxine, while going back to my organic diet and exercise so I can report a positive experience. I have full intention of giving others the hope I was given back after hearing that dreaded word. Lets be honest, there’s no scarier situation to hear ‘you have cancer’, other than a child crime.
Everything about the word can be daunting.
As Bobby and I sat in Sloan-Kettering for my first appointment waiting, we witnessed an elderly lady in a wheelchair attempting to fill out her own paperwork as her cold assistant did nothing and looked like she couldn’t care less. We also watched a 22 year old girl walking out bald. Too many young people coming out coughing up blood in a handkerchief.
Bobby and I were both feeling more uneasy with what we have already been affected with watching that in our personal lives. I abruptly asked where the bathroom was, since he had already gone. I jumped up and evidently ended up in a different one than the one he instructed me to. My sweet man came looking for me and assumed my commitment phobia had kicked in and I took off.
In reality, I wanted to avoid knocking out the inconsiderate ass who was ‘assisting’ the sick elderly lady and I wanted to pee before the meeting.
As much as I hate commitments and yes, I have opinions and beliefs on cancer just as everyone else does, I would never walk away from a situation that I care about and that I can fix. There’s nothing to fear but fear itself.
The good news is you can have a life after being told you have cancer. You absolutely can recover if your thyroid cancer is found early. This really can be a thing of your past in which makes you all the more stronger.
I intend to be one of them.
Keep in mind if you’re active and yet experiencing shortness of breath while doing something so simple as talking on the telephone, check your neck. Just as women check their breasts for lumps.
I assumed I was drained when that happened while speaking on the phone. It was odd. Long walks, biking, and working out didn’t leave me winded but climbing stairs and speaking on the phone gave me shortness of breath.
Dr. Morris’ assistant told me those are symptoms, since my tumor shows to be so close to my windpipe.
The other symptom is added fatigue. Conversations with others who fought cancer reiterated that fact.
If you happen to have those symptoms don’t panic. Something as small as a lack of a needed supplement to your body can give a person those symptoms. Just be diligent with any and all lumps. Pay attention to any lingering pain in or behind your ears. Even if you have or had Lyme Disease. I know how common swollen lymph nodes are with Lyme. Even though nodules in the neck are 95% benign, have an Endocrinologist only check your nodules. When I suggested to my family doctor last year that maybe I had a hormone issue she blew it off since she said, “You still have a regular menstrual cycle”. She assumed the lumps were swollen lymph nodes from Lyme as well.
This Endocrinologist knew immediately. (Refer to my blog: Most Important Road Trip of All.)
I feel so fortunate for my support system of family and friends, and the fact that I have health insurance. I plan to be a part of that fight for others just as I have and continue to for children’s rights.
I have officially prepared for this. Time with my family. Plentiful of prayers through myself and my loved ones. A weekend of gorging on every type of fattening food I have ignored for a long time (except red meat). My usual therapy session of soaking up the ocean ambiance and saltwater. A night of delicious champagne and cocktails in New York.
I feel 100% confident about this surgery and am more than ready for the next chapter of my life.
“Time And health are two precious assets that we don’t recognize and appreciate until they have been depleted.” ~Denis Waitley
As we pack to head to NYC, I’ve decided to take on the treatment. I won’t know if the surgery will be radical or modified until the doctor calls. Modified is one side of the neck to back behind the ear. Radical being opened up ear to ear. The latter being due to both sides of the neck with cancer. Last year the left side was considered suspicious. The verdict to the rest of it is in. I’ll find out soon enough. Truthfully, I’m dreading the Pet scan the most because I don’t want to know if its anywhere else in my body.
Just to be blunt here, I’m counting the minutes until I can never walk into a medical facility again.
I’ve had many people who have known me my entire life tell me they’ve never known me to not be a fighter. They’re right. I can’t walk away from this, and the lumps have been overlooked for too long from negligence on many doctors part and my assuming them to be from Lyme Disease, to take on with holistic avenues only. I’d bet cold hard cash its in my lymph nodes in which they will need to cut out. I’m afraid for Bobby and Drew but I myself am not afraid to fight back. A month after this thyroidectomy the patient is then put in isolation at the hospital for the taking of radiation pills or liquid treatment. Bobby is refusing to not be in the room with me. It’s okay to put radiation in me but he’s not allowed near it. Wish me luck on enforcing that. All I want to do is to protect them both but sadly a person can’t after you all face such news.
My focus this past week has not only been relishing in the deep love my husband and I share, rediscovering my lifelong spirituality, and also staying positive and busy with my girl.
Many discussions were necessary, this being a vital one.
I rarely saw my mom let herself fall apart. Having six children, working a full time job, being against alcoholism while my dad was a consistent beer drinker, you can imagine the hardships she faced at times. Although, she always held herself strong, tried and true.
This is one of the handful of times I saw her fall apart. Although my mom was a rock, she was also very compassionate, unselfish, loving and kind. She cared so deeply for flowers, music, poetry, children-especially her own. She also idolized her sister, Lois. She always said she saw Lois more as her mother than her sister. Going back and forth living with my grandma Belford in Pennsylvania and Aunt Lois in West Virginia.
You would wonder why, but that’s another long heartbreaking story in itself. I’ll say this, I learned loyalty from my mom. After much abuse as a child, abuse that would stay with a person for life to learn about and it being the main reason I’ve always fought for children’s rights. When my grandma (my moms biological mother, as she put it) was in the Curry Home for years after a stroke, this particular unconditional loyalty was taught to me. Every single Sunday, as soon as mom got off work she ran home to blow the horn and take me to visit grandma. Our ritual, twice a week was always picking up two cheeseburgers at McDonalds and two Reese’s cup candy bars to sneak in to grandma. After leaving one day I asked, “Mom how can you do this every week after what happened to you in her care?” As her sharp green eyes focused on my same green eyes she answered, “Because regardless of how terrible she was with her children, I wouldn’t be here, you wouldn’t be here without her”.
The loyalty showed in mom’s favorite person as well. Aunt Lois was a marvelous person. The type where you would walk away thinking, “She’s amazing, is she for real?!” Just like my mom, you would have to have met them both to get what I am trying to convey. Aunt Lois was Godlike, but not preachy. She was loyal and in love with her home state of West Virginia, just as my mom. Mainly because of the nature, animals, mountains, beauty, and living there on her horse farm. Even though my mom and aunt grew up in an abusive environment, she was the best mother one could be to her children. Just as my mom, with her biggest and only fear; losing one of her children.
Thankfully, I remember Aunt Lois clearly, and mom talked about her from as long as I can remember. When the song, “I Was Country Before Country Was Cool” – by Barbara Mandrell came on, the emotion would show in Moms face every single time.
“That song was written for your Aunt Lois”, she’d always say.
I never felt as though I could live up to the fact I looked so much like my mom. My mom and my parent’s friends told me I looked just like her every day. I see it in the mirror and hear it all the time to this day and I still don’t think I can live up to it and that’s okay, but I won’t.
She was so stunning to me. The epitome of femininity.
The icing on the cake was hearing my mom tell me, “You are a lot like your Aunt Lois”. I thought, “As if looking like mom isn’t enough, I could never be the saint Aunt Lois was to her”.
After a shocking, grueling, and out of nowhere death of my Aunt Lois from Brain Cancer, my moms sister and mother in her eyes, I watched a great deal of pain I didn’t understand at the time. My dad was crushed as well. I was very young and death put me in the state of confusion. A kid doesn’t understand death, I remember when dad would get new cattle mom would bellow out, “Don’t name them!” . Now I know what that meant of course. As a kid, all I knew was I’d never see that person again and my mom was extremely sad. I remember missing my mom’s smile and laugh. My dad playing heartfelt songs on the piano.
It broke my heart for mom because I loved her so much. My mom mourned her dad’s death from the time she was six. You could tell by the way she talked about him. Now she had to suffer with this as well. I recall many times asking God to help her feel better, when praying at church or bible school. I always prayed for my mom, especially for me to die before her. That was a constant prayer. Depressing thought for a kid but true memory.
Some time later after Aunt Lois died, one particular day my mom answered the phone all to drop the receiver and break into tears from obvious pain. We were all baffled. Our cousin, my mom’s niece, Aunt Lois’ dear daughter Beth who Aunt Lois was very close to, had escaped her abusive husband to then walk off the plane and find him standing there in public, with a gun and he shot and killed Beth.
After my mom grieved for some time, in her quiet, reflective, strong way as she normally did. One of our many nights staying up late talking together she told me something powerful I will never as long as I live forget; a story I shared with my girl before this trip, since she loves me so much and adored her nana.
My mom said, “I want you to always remember, there’s a reason for everything. Whether that’s from God or some sort of energy, there’s always a reason. I’m finally at peace with the loss of Lois”. I was in awe and in relief. “Why mom? How?” She replied, “Because your Aunt Lois never would have survived the death of Beth and she believed in God so much, she would’ve felt complete shame to kill herself but she would have gone through with it. She never could have survived the death of one of her children. Lois was meant to go before that happened. Now I have my answer to her being taken. No matter what happens remember there really is a reason for everything”.
Now don’t get me wrong, I don’t plan to leave this earth yet. I have full intention of fighting this cancer every step of the way. It can happen. This diagnosis is not an automatic death sentence. Although, I only have the power to fight back and even though I would rather eat a live rattlesnake then to see Drew and Bobby suffer, I would take any pain for them to be spared. The word cancer, not knowing if time has caused it to spread elsewhere, and the impending battle one awaits to face, gives a person the ability to reflect and use the pivotal information the important generation before you shared. My girl found this story to be positive. This being one of her favorite things I have shared. I am not surprised my mom is still here to protect myself and Drew. I am more grateful to the ease of mind in any way for my daughter, than anything else.
I know in my case, I have experienced signs. I’m a believer in signs. For one, when Bobby asked Sloan-Kettering to give me the best for my situation, they called back to let us know my doctor will be ‘Dr. Morris’. Also when my biopsy packet was sent overnight to NYC as I checked the status of delivery, I was floored and yet comforted to see the signature for the package. ‘H. Morris’. My dad’s middle name is Donovan, he signed everything H. Morris. My pap was ‘H. Morris’ as well.
This news has enlightened me to another plateau. Maybe this was supposed to happen to me so I could be drawn closer to God, a higher power that I believed in all my life. Possibly this was the road that I had to follow so I would wholeheartedly, encourage Drew to live at college and not at home so she could develop her own independence and free will. Maybe it was so I could let go of the anger and bitter remorse I live with every day of losing my parents so close together. Perhaps it was so I was forced to face my fear.
Even though I made it a rule to only laugh and talk about the good memories of my mom after her death. This diagnosis and trip this week has opened my eyes to do something I never thought I could, to finally let go.
To not let being bitter override the beauty of her being here. I should have known better, my mom always gave me plenty of talks on what being bitter can do to a person. I will never forget or stop missing her of course, but I’ll stop giving myself ulcers or added cancer with discussing what happened to her. Just as she accepted with Aunt Lois, I’ve finally accepted it was simply her time.
It’s something how your family can save your mental state. Even though my mom was a fan of Sinatra, old classic Hollywood, and gowns. Mom and Aunt Lois had the mutual love of West Virginia, they also had the colossal desire to be maternal even though they weren’t given any idea how, the devotion for what’s good decent and right, in common. For my life, they were also the best I’d ever witnessed in sisterhood. Along with two lifetimes of an excellent example in humanity and comforting two more lives even without their presence.
For those who live with two diagnoses. Worth checking out, especially if the MS shots make you worse.
How Identical Lesions Compare:
While at work today, I thought of how I will find the perfect song and tell the ideal distracting story for all who care to watch this blog. I’d rather take your mind off this hell as opposed to reminding you of it. First, since I value the letters of others reaching out, I would like to remind anyone with the doubt they will ever feel normal again. You can. You will. IF you never stop trying.
Raven, for one-of many, knows of how MINISCULE most literature, FDA, government, and insurance companies make Lyme Disease appear to the ones who don’t know any better. The cretinous don’t realize this condition can overtake your life, as well as kill you. However, we all know that doesn’t mean we have to give up. There is hope that things can change.
While you are baffled and fighting the fact that a Lyme patient is only treated for six weeks, STOP and know each one of us can study, research, be our very own doctor-to find what puts us in the much needed necessity of herxing. (*ALWAYS remember you do NOT want to overdo the herxing. When the blessed yet painful day arrives, suffer it out. Then, stop for three days before you continue to avoid shutting down organs.*) Drinking freshly squeezed lemons will help ease the herxing as well. I would list the natural methods (over hundred..) I attempted to treat myself with for my Lyme. Although you MUST remember each Lyme victim is different. I can only tell you what changed things for me. I don’t want to encourage / discourage you into becoming desperate to go out and purchase the entire list I worked at. If you can have the IV treatment, and not in late stage Lyme, you are on the right track.
I never had the luxury of having a decent LLMD that took aggressive treatment on me. My LLMD wanted to but he wanted to take years to boot. So as usual, I went my own route.
For six straight months, I took Argentyn 23 colloidal silver-three tablespoons a day, held under my tongue for thirty seconds- on an empty stomach. I drank a half gallon of purified water after each dose. Along with; I never consumed red meat during these six months, I took the much needed supplements, and I made sure to do the dry brushing with food grade peroxide hot baths. Detox is VITAL. (..natural detoxing is the only method that works in this case.) Some research will tell you that your skin will turn blue from taking the silver. I looked at it like this; Argentyn 23 has a protective ingredient from this happening, medical journals told me that is only the case if you are making it homemade and drinking it daily for over a year, I would rather be blue than dying from Lyme Disease. It’s your choice.
I know what it feels like to be tired of fighting. BUT YOU HAVE EVERY RIGHT TO TAKE IT BACK. In the end, you will be a better version of yourself than before the vampire bit you. That little histrionic tick has had enough attention. THIS IS ALL ABOUT YOU NOW. Yes, if you were misdiagnosed and untreated as I was-you will most likely have damage or another situation to deal with from the aftermath. I am now in remission from the Lyme. Treated for cancer and I have lost all my Lyme symptoms. I am working, active, clear headed, alert, & myself once again. I am anxiously awaiting your recovery story as well. Until then, kick back-drown yourself in some more blues-while you take your protocol-and researching — as well as keeping the mindset to REMEMBER the day will come where you won’t want to read about Lyme any longer. BE WELL.
“Nobody can go back and start a new beginning, but anyone can start today and make a new ending.” ~Maria Robinson
I could not be more tired of this.
I have grown numb to the repetitive – constant – work – at getting properly diagnosed.
But I go. I honestly don’t have it in me to not fight back.
After I was on ‘the road to recovery’ from battling Lyme with low dose naltrexone and colloidal sliver along with many other rules. Hydrogen Peroxide baths/dry brushing, the tediously studied supplements, exercise, sleep, a great deal of holistic methods. I also still knew, I could feel better. And feeling so fatigued – any sane person would know they are still ill.
I fought it. As much as I don’t understand lying to oneself-I tried denial out. I still was social, like I have always been. Well, not the real me level-but I was still social. I had plans for myself with the move and finding my family a home. I made sure my daughters senior year went as she hoped, I was trying – thinking I would focus on my problems later… while a new intimidating, troublesome symptom came upon me to be sure it will never let me forget…………
Last I seen my Lyme doctor was months ago and after my almost giving him a black eye from his disrespect he so blatantly and proudly barks out to women.. I couldn’t take it another day to permit him to cash in on me.
*Although, had he actually made progress with me – I would have put up with it till I was better,* but as he prolonged everything, I was feeling symptomatic and had now developed neuropathy down the entire right side of my body.. and it scared the living hell out of me.
That’s a moment you will never forget.
Innocently, sitting and reading as you feel as though your dentist just jabbed you in the side with their novocain…as it slowly runs down from your stomach to your foot .. to never wear off.
I think I got it from my mom but I don’t panic. I’ll holler out a little if I stub my toe. A serious infliction? I’m a professional card player.. and yet inside I was feeling a bit more unnerved.
We were also approaching moving out of state. As Bobby worked, I packed the entire house and made all the preparations. All the while, mindfully alert to the fact I had been through a lot of negligence, malpractice, and guesswork from others.
I immediately got to work on finding either a Lyme hospital somewhere to check myself into, or a better doctor. Something. I made myself better from years ago but my body was now telling me something else was being ignored. Obviously.
Again, to look at me-you would never know. Thankfully, I could and can, walk fine.. But neuropathy was an eye opener for me to give one more doctor a chance. Even though Lyme can cause neuropathy, I didn’t care if I had to have ten more spinal taps, five more emergency trips for a brain bleed, ten full body MRI’s with/without contrast or eighty more tubes of my blood – JUST TELL ME WHAT THE HELL TO DO!!!???
I didn’t want to fight it alone anymore. I’m always confident enough to fight for something on my own and I had always done just that in my life. With the neuropathy, sadly, I had hit my limit.
After much research, phone calls, discussions on Lyme support groups – I found a clinic that had a doctor as the former lead of a California Lyme Hospital. The only catch-pay up front. They happily help you get it back from your insurance but to simply walk in the door-you pay your bill. I have lived here since June and have already been diagnosed with Hypothyroidism (a VERY COMMON condition linked to develop with Lyme..) My doctor said since my mom had it I was in an even higher risk and that my thyroid is functioning at a one third of the level it should be so he was surprised I ever get up at all.. he put it in car terms, “you are mentally in first gear but your body has the emergency brake on..” This man, who I immediately liked, as he immediately listened, believes my Lyme is over and once my thyroid is treated he said he will be my best friend in the world in about six months. 🙂
It’s a new world for me. They have called weekly to check on me when they don’t see me, I have had nuclear cells or s’mthin’ scary cells testing-(I’m tired of studying..), I was assigned a medical assistant when I have a question/need anything, hair testing for metals in my body, an ultrasound on my thyroid, a complete thyroid blood panel, supplement level blood work, and this morning I had the first of two days doing the iodine radiation testing.
I hope I don’t wake up to find all this medical help a dream.
Anyone who has been through the ringer like I have can tell you, It can all certainly put a chip on your shoulder. Am I naive to believe medicine is a straight line? Or has it become a matter of opinion? I’m still the same guinea pig. I don’t get it. They are all taught the same thing, right?
Nevertheless, tonight as I write this.. and my family lie sleeping.. we know today’s testing was also about a mass in my neck. With the way I mourn my parents deaths and how they died, you would think ‘cancer’ is the go to, in my mind.. But it’s not.
I honestly have no idea what it is. It could be tissue just like the benign lump I had in my breast years ago, it could be a mass of nothing, it could be serious. All I know is I finally found help, we are all active and happy with our surroundings, I was hired for some interesting freelance work, I still plan to have an ending to my book, aggressive progress is going on by this doctor, and more importantly, this doctor wants to help the person-not the patient.
If you have read this blog from the beginning then -you know- the latter is enough for me.
~”Strength does not come from physical capacity. It comes from an indomitable will.” ~Mahatma Gandhi
I was going to put all this behind me, not to write a final blog on the subject..but I feel I must. If anything I can enlighten others who have questions. And, I can write and read how I got my answer – again. 🙂
I hope I don’t sound disparaging, but explaining to others a misdiagnosis or the rational on why a neurologist chose the more severe diagnosis is the same as my trying to explain to a ten year old the gravity of giving childbirth and becoming a mother.
Unless you have lived this frustration, you will never know. And, I am finding out how all too common this epidemic of Lyme is. I have had three people come forward already with their story of how they were originally diagnosed with Multiple Sclerosis to be told they were in fact a Lyme disease victim.
Also, regarding my medical treatment, even with my Blue Cross / Blue Shield, I am being asked questions I am asking myself to this day.
Regardless, of my repeated findings of how neurologists receive kickbacks for meds, the many times I was told by a pharmaceutical scientist income determines the quality of care, I am still shocked I was treated like a number. A price tag. A MRI. Not a human being.
Since I wrote last, I was battling the adjustment of Low Dose Naltrexone–1 mg the first month, 3 mg the second month, to obtain my goal of 4.5 mg, which I am at now. (I am continuing since my LLMD told me LDN is beneficial to Lyme as well.) Lyme causes depressive episodes, anxiety, insomnia. All to which LDN has helped tremendously. So, I am living proof to stay on it.
As the LDN experiment went on..One day I would feel energetic and upbeat. All for the second day to feel as though I was viciously attacked by a wild animal. Just in complete muscular pain, extreme fatigue and my usual knee / feet pain, that I treated with massages, jacuzzi time, and Bio Freeze. I continued on the Swank diet, supplements, stress reduction, exercise when I could, and my LDN. While holding on to all hope I would put the MS, if I had it, in remission.. Or at least, prevent any attacks. Since I never recalled the first one, I didn’t want to find out what it was like.
Oddly enough, late at night when I couldn’t sleep, I would pick up my trusty laptop. Not to check Facebook or look for new music, not even read MS medical information. I knew all there was to read on the subject. But I would always gravitate towards Lyme Disease information. As hard to believe as it sounds, I am not a fiction writer-wish I was, I was simply overwhelmed with the gut feeling I had Lyme all along. I read all I could. Lyme support groups from people who lived it, how the MRI findings by Mayo Clinic read ‘small white matter lesions’ (my MRI’s exact description..) How if one has Lyme they will go through depressive states for no reason; anxiety, pins and needles, muscular pain, arthritic joints, burning in limbs, irregular heartbeats, insomnia, brain fog..and more.
I would come to a moment where I would think of the advice of others from MS groups. “You are in denial..you will come to terms with it..” — But I would dispute that for myself-knowing-how could I be in denial if I am fighting it everyday? Researching, reading, checking in daily on a MS suport group, taking 14,000 iu of liquid vitamin D3, many supplements, not letting my baths get too hot-even though I can withstand the heat. The list goes on and on of the discipline.
I remember one day talking to a friend on the phone, from the Swank group. She mentioned -in passing- how scary it was to at first experience the Lhermitte’s Syndrome .. I asked, “what’s that?” she was puzzled, “Donda, it’s where you bend over to blow dry your hair and it feels like theres a phone on your back on vibrate. You have never felt that?” I was nervous, “No. I haven’t.” She was baffled. “I don’t know if you have this, Donda..that’s one of the earliest signs..” A statement that was said to me over and over again through 2010.
While my gut screamed, “You don’t have this. Something is wrong.”
It’s funny how you can train yourself. I was now a warrior in this MS fight. I had to live with what I was told and plug through. Turning down every pastry at a party, choosing fish over meat at a barbecue, checking all oil intake, being sure my toothpaste, shampoo, everything was gluten free. (Can’t have gluten while on LDN-it affects the ability for it to work.)
As I still hit the library and looked up all the information I could find on .. Lyme Disease.
One night I was studying the LDN support group more extensively to find many threads on Lyme and LDN. All the Lyme patients were talking about how often they were misdiagnosed, led to believe they were hypochondriacs or mentally ill, the long suffering while waiting for treatment-as their symptoms sounded like mine, how their tests will read negative up to six tests, how hard it is to find a LLMD (Lyme Literate Doctor) .. And, a greek god, who saved me personally and others I’m sure, answered, “If you have Lyme, or even suspect it, you should see a well known LLMD in PA, he is amazing.” .. he told others. (but the name/number was blocked out from the privacy rules of the support group.) Thankfully, his email was showing. I immediately wrote him, asking for the information of this almighty LLMD. I had the information in hours.
I then went on my quest to determine why the original Lyme test I had done didn’t cut it. I was finding more and more how difficult it is to even find Lyme. Top it off with the news / fact that if they don’t do extensive testing on all bands for the disease markers. It won’t ever be found. But Igenex, from California, was a different story. Lyme can be so hidden, it can still show a false negative, the test I was given is 80% INaccurate. Igenex is 90% accurate.
I made my appt., with the LLMD..months ago. While all my paperwork & tests sat in his office. I was put on a cancellation list, just in case.
Before we left for vacation, as I stared off thinking, for some reason, I picked up the phone to see if his office still had me on that list. The secretary informed me I was indeed on the list, as it hit her. “Oh! as a matter of fact, I just got a cancellation. Would you like it?”
I went in 2 months sooner.
As I walked in the waiting room, on August 15th, it was exactly how the Lyme patients described it. In a medical professional building. Very quaint. Quiet. One secretary. My first thought, ‘another one bites the dust..’ I sat down. Feeling the stress overload from seeing yet another doctor, too soon. As I sunk myself into a chair and my tight neck tried to adjust to looking around and ‘feeling my surroundings.’ Bobby went to the front to let her know I was checking in.
Bobby handed me my paperwork and I read through them. Basic paperwork I filled out too many times, then the seventh page woke me up. It was a long explanation on how the Dr. takes time with each patient because Lyme is such a serious state. So we are to feel free to leave for dinner, shopping and return. I looked at the man across from me who seemed as though he waited so long, he was about to snap. I whispered to Bobby, “get ready..we are going to be here forever..”
As the time slowly ticked by, no pun intended, classical music played over and over, Bobby’s eyes were growing more red by the second.. he said, loudly, “this music is going to put me to sleep..” .. I had slipped over to the couch at this point, ready to nap. A woman walked in, had a seat and was all the more eager to talk. “Hi honey, these are long. But he’s worth it..” As we had a discussion, she told me how she was from NYC and traveled every six months for a check up, her appt., was hours earlier-she had just gone to dinner, how her knees had arthritis, how her children all had lyme. All from camping..& this LLMD saved their lives. Then as I could feel my newly growing nails from my super pill-LDN, being chewed off and dropping on my lap, she told me about her best friend’s husband who was diagnosed with MS, treated with MS meds and his autopsy showed he had Lyme all along.
When she went in, I looked at Bobby and said, “my god..we are on to something here.”
It was finally my turn.
As this short, clean, perfectly dressed man from india entered .. the doctor shuffled through my paperwork, he kept saying to himself… “beautiful. beautiful report.” — I was frozen. WHAT THE HELL IS SO BEAUTIFUL PAL?! Just kidding, but inside, I thought HUH? Wow, this guy loves his work.
I had three moving things said to me that I will never forget.~
When we finished the physical test, EKG-which was perfect he said, bloodwork, interview..hours later..he sat me and Bobby down again to straighten my many papers from three doctors. “Okay, Duunndaa, this is classic case of ..” — I was there for an answer. I would deal with the outcome of hearing it later. I stammered, “uh..err..MS?” .. he quickly grew with trained frustration by his plight with speaking English. “Uh, no, you have damage to small intestine, enlarged lymph nodes, and severe inflammation in your stomach and your brain, this is classic case of Lyme. I sorry, I not speak as quickly as I like..even if I not have tests, I would treat you. That’s how sure. Your MRI shows clearly Lyme, and blood test worked anyhow.”
When I asked how the neurologist in Pittsburgh could put me on copaxone and tell me such a serious diagnosis, he said.. “I not know. He work too fast. Pictures, blood, symptoms, show Lyme.”
I continued to question him. “What about my spinal tap having too much protein?” — He said, “So? Lyme show too much protein in spine as well. Identical diseases..”
**Dear god..can you imagine the fear for seventeen months, to be given a concrete answer.**
#2~During my physical exam, as he took my hands to study them, he asked about my rings. He spoke of how jewelry showed respect in his country. Giving jewels is a sign of power. After he advised Bobby on how to help me with fishing line, if my fingers become swollen, he looked at my right hand. “What is this?” he asked. “That’s my Mom’s dinner ring.” Ironically, he asked, “How is she?” I grew uncomfortable, as I tend to do with the thought, “She died..both my parents died of cancer.” His face grew serious, “you know, this is for the best they are not here for this. You understand?” — I teared up, nodded.. ” Yes.” I answered.
**My mom was there with me. I didn’t bring her up. And it wasn’t because I wore her ring, but she was there.**
When I questioned his testing and how sure he was, he pointed to a enormous medical book that I was salivating over. “Do you see that book?” I have been a doctor for 55 years and I can open that book and still learn something I do not know today. Lyme, I know. It is all I do everyday, treated, explored and studied. You are classic case of Lyme.”
When I questioned him again, “I have your blood. You have Lyme. Go home.” — As he looked at Bobby, “Oh my you give these women something and they want more.”
There is no money, only other than my insurance, for this doctor giving me antibiotics, IV treatment, and teaching me a holistic approach to healing, which he done when he battled Lyme himself. My neurologist in Pittsburgh, pushed a drug on me that costs $2200 dollars A MONTH. When I told the doctor of Johns Hopkins diagnosing me with Radiological Isolated Syndrome, he laughed and shook his head. I asked, “What is that?” He said, “I not know. I was going to ask you.”
Little did I know as we lived in Cheat Lake, a house nestled at the wood line, surrounded with railroad ties, a jungle to mow, trim, water every two days as Bobby worked away, while deer traveled daily through the woods and field behind us, as I left my garage door open every day to smoke my crappy cigarettes, as I experienced the first symptom of a lyme infested tic bite-and suffered through a two week flu, in which the flu meds gave no relief whatsoever, I was bit by a tiny little angry sonofabitch that turned my world upside down.
But thanks to the little bugger I found a stronger, new improved me.
And, once I accomplish treatment-hell hath no fury like a woman scorned. As in with how I treat myself in this short, combative life. 😉
*The many of articles on Lyme Disease Misdiagnosed as Multiple Sclerosis. http://www.lymeinfo.net/multiplesclerosis.html
*& One of the many reports in journalism. http://abcnews.go.com/GMA/story?id=5300584&page=1
And so life goes on …
~Dedicated to the friends who even with their own lives to run, took the time to be concerned, loving and supportive.. who praised my efforts and changes-without dwelling on questions, who never viewed me differently than who I have always been. Knowing without a doubt-that I would do the same for you, And-never seeing me as sick–because I’m not. :)~
And, to Sheri and Kerry–for continuous understanding for living what I have and your warmhearted support.
A fact that has been proven:
“Loving and living within a network of friends and family improves your health and your chances of recovering from illness.”
At the beginning of the last week of June, I decided to start the medication, Low Dose Naltrexone.
My second year of excluding myself from the 4th of July festivities, so I can work through my mad scientist work.
I felt very nervous to take on the med while Bobby was on the water, working. My reasons to go ahead with it were this:
1) I knew the more significant test was being on the 3 mg. but I had to begin with 1.5 mg for 3 weeks before I hit the higher dose, to become stabilized.
2) I read in a medical journal, that even without feeling symptoms, autoimmune diseases go on. Yet, LDN repairs myelin sheath. So, common sense and research told me, to get answers, & if necessary, help. Therefore, I had to get it in my system.
3) I’m not always patient. As much as chantix scarred me, I still knew it was time.
To date, I can report, it is mind blowing the energy this LDN gives me on some days, even on such a low dose.
Many days I can honestly say I feel as though I had in my 20’s. Unfortunately, since my body is adjusting to the med and it can be painful when the med clears up old infections, of any kind, some days are debilitating. Not with mobility but with simply feeling awake. Regardless of the daily supplements and exercise I enforce on myself, the tiredness can be overwhelming. Plus the insomnia the med gives you while your body is getting adjusted, is frustrating. The good thing is I’m easy going. At night, I just go with it, pick up a book, find something on TV, take a walk, &/or watch a sunrise.
(*Writing is impossible at those times since the drained head takes away that concentration to be creative.)
I am unable to ‘veg and eat’ — not only due to my diet rules but the LDN has taken away my appetite. I have to force eating. Not because it makes me sick, I just don’t desire food. Something I know will make Bobby very upset when he sees it for himself.
*I am told the LDN insomnia will end.*
Although with the obstacles, I never stop researching. N E V E R. I diligently work for more and more reading material that is written only by the medical community and individuals who have conquered to rid themselves of brain lesions, to find masterful ways at my search for answers.
And to think of the disappointments with doctors.. **insert sarcasm here..** What a shock, huh?
For one, when this all started, my jovial neurologist often checked on me. No, I don’t need to be babied by a busy physician. But, I took his word on the copaxone, as he reaped in the monetary benefits, so having his assistant call.. Yes..that seems only compassionate, right? Did he take my trusting his opinion as a form of respect or fear? Makes you wonder. What is the true reason a human being works in medicine? Can’t only be for the paycheck, could it? Or, am I that harmonious within?
Well, some time after stopping the copaxone, he called to push it once again on me, as I stated, “I was hoping to give the LDN an opportunity to get answers & help if needed..” — He grew cold over the phone, to tell me, “Then you can call your second opinion doctor. Goodbye.” *click. Thankfully, if I don’t care about a person, I really feel nothing when being rejected. So, no problem. But nevertheless, how childish can you be? A grown professional that was bugged I wanted further opinions. We aren’t discussing a head cold here?! Oh, wait a minute, he doesn’t get his copaxone kickback from me now. How frustrating for the poor doctor.
Copaxone is $2200 a month, for the patient. Yeah, he lost money. & I’ll get a third, fourth, fifth opinion if I wish–asshole.
Secondly, I have found out that LDN treats ALL autoimmune diseases, including Lyme. (the latter being what I still many days really believe I may have the late stages of..it’s a very close match, in which mimics MS, so who knows.)
LDN is so powerful it also helps addictions in much higher dose than mine.
I am now at the acceptance stage of my high possibility of never knowing what my brain lesions and the symptoms I can endure are from. I’ve hit all stages of grief-except one, with this health journey. I have had practice with losing my beloved parents..so I know them all too well.
1. Denial and Isolation. (*done denial with my dad’s death & isolation with my mom’s death.)
2. Anger. (actually, with the health, I felt more empowerment than I have anger.)
That’s a relief, I’m at acceptance. My favorite stage of a crossroads in life.
As for this LDN test, the energetic days-from the high rise in endorphins, which I am feeling are already happening more often, are very powerful. I can sleep only 3-4 hours, to arise to the alert feeling – with red eyes – to shower, do yoga, drink coffee, work on our flowers, take supplements, and head out to exercise. The energy even increases at night, where I find myself amazed with walking inclined roads for two miles. (I always exercised and walked, but I have a FULL, different energy and could easily walk more..) While my well being feeling of ‘quality of life’ radiates from me, and I drink my green shake with my low fat dinner. And, my red wine later in the evening..with witty repartee upshoot to boot. 😉
I sincerely believe there are many more days like this to come. Once again, and to this day, if you seen me in person, you would never think I struggle with anything. (Due to healthy living, not the LDN.)
I have not been on the LDN long enough to report much more. I may come back with little, even better, worse, or no news. However, even if the LDN stops working, or never continues to stick with my system, I will prevail. I will never forget my largest lesson of all: ~Your body will react to what your mind tells it.~ Again, I am unable to live in denial or fairy tale land-people who can do that blow my mind, I just wholeheartedly believe it.
Who would have thought going to the ER for head pain to end up with scary MRI results – that begun with brain cancer as the diagnosis assumption, could change ones life for the better? When I think of how I felt in Cheat Lake, in March of 2010-for example, she is a different person. I don’t even remember her until Bobby and Drew tell me of how amazed they are with who I am compared to the person of those times.
Yes, age causes aches and changes beyond our control, but if you can honestly say you are mentally and physically BETTER than you were the year before, you are healthy.
Due to being asked–as for the LDN, since it is only approved in high doses and because it is now out of patent, no one will spend the millions required for FDA approval. My advice to you would be to read/learn everything you can about LDN, or any health adversity you may face, be patient, have courage, and take an active role in your treatment. Make it happen for you.
If you are unable to find assistance from your doctor, there are resources who will help you. Including myself-with what I know. If the LDN does not benefit you, for anyone who asks-I can offer suggestions to improve your health without it as well. And, I won’t be bothered if you choose to take your own path. Nor, will I ask for a kickback. It’s decent human nature: kindness, to each it’s own, what you put in your body, how you work your brain, and education, makes for good medicine.
This week I will embark upon a new journey to possibly help me in my fight. Low Dose Naltrexone.
It is approved through the FDA, Naltrexone, at 50 mg to aid in drug addiction. But Dr. Dr. Bihari, who discovered the benefits of MS patients taking this med in a low dose, hence the name, did not have the tens of millions of dollars to get it approved for MS treatment. But then again, keep in mind of all the deadly drugs in which ARE FDA approved?! Money talks. You know this.
Naltrexone, short for Naltrexone Hydrochloride, is an opiate antagonist. At a therapeutic dose of 50 mg per day, Naltrexone blocks the part of the brain that “feel” pleasure when a person uses alcohol or narcotics. When these areas of the brain are blocked, a person feels less need for “one more drink” or “one more hit.” The FDA approved the treatment of alcohol and opiate abuse, Naltrexone has recently shown great promise in the treatment of other medical conditions.
The use of low doses of naltrexone for the treatment of multiple sclerosis (MS) enjoys a worldwide following amongst MS patients. There is overwhelming anecdotal evidence, that in low doses naltrexone not only prevents relapses in MS but also reduces the progression of the disease. It is proposed that naltrexone acts by reducing apoptosis of oligodendrocytes. It does this by reducing inducible nitric oxide synthase activity. This results in a decrease in the formation of peroxynitrites, which in turn prevent the inhibition of the glutamate transporters. Thus, the excitatory neurotoxicity of glutamate on neuronal cells and oligodendrocytes via activation of the alpha-amino-3-hydroxy-5-methyl-isoxazole-4-propionic acid class of glutamate receptor is prevented. It is considered “the cure”.
After extensive research and the help of fellow Swanker, Sheri, I had found two -of many- doctors who may prescribe it to me. One being in Pittsburgh. And, another in Mechanicsville, PA. Not all neuros and family doctors will prescribe it but many will..you just have to find the one who will. I was given that prescription today!
My closest friends are concerned, and I am truly grateful and moved to have a loyal circle who love me and worries for me, but I assure you, I have researched these doctors and this med. Just as I have everything in health, since May 2010. Bobby & Drew are witness to my mad scientist work, so they are hopeful the LDN is a positive experience for me and all for it.
Low Dose Naltrexone also known as “LDN” is a prescription drug that doctors are prescribing more and more to help many diseases go into remission. LDN is an inexpensive, low side effect, drug that has been in the news for its miraculous results in people with MS, fibromyalgia, many cancers, Lyme, psoriasis, children with autism, ALS, Alzheimer’s and many autoimmune diseases.
Dr. Bernard Bihari worked with LDN after it’s approval, but later then tried it in much smaller doses for his patients with MS and different types of cancer, which brought amazing results of complete remission.
Originally, Dr. Bihari gave the LDN to a friends daughter, who was diagnosed with MS, her progression and symptoms completely stopped. After some time of complete health, the girl even stopped taking the LDN, believing she never had MS and at that time, her symptoms returned. She went back on the LDN and her progression stopped once again. The dr then went on to prescribe to all his MS patients. Many others with MS, have had this med proven to them..through symptoms stopping and the positive, amazing change in their brains from MRI’s they returned for.
Dr. Bihari discovered that LDN has the ability to assist the immune system in fighting off disease and helping to build up the endorphins in the brain, among other important factors in helping the body heal.
As with anything in life, every person who may be dealt the same cards, makes the path they choose. Some stick with copaxone, some stick with the Swank or McDougal diet, some take the other meds the neuros push, and some take LDN. And then there are the ones who are not given definite answers yet try any and everything to get those answers.
Low Dose Naltrexone Has Helped Many People With MS.
CBS News did a full story on a woman named Ronnie Raymond who had lost her strength and balance 20 years before getting a prescription on LDN. She amazingly recovered her complete health after being on LDN. It is now recorded it has since helped many others with various diseases. You can find the story of Ronnie Raymond on CBS online.
More Than a Magic Bullet: Low Dose Naltrexone:
Less muscle spasms and pain
High sex drive
Less heat intolerance
Fatigue problems resolved
Healing of nerve damage
Repair in brain lesions
Restored immune system
Vivid dreams / disrupted sleep *can be used with benedryl or melatonin to aid this.*
High energy level
increased endorphin levels
Prevention and diminished expression of experimental autoimmune encephalomyelitis.
Halted progression of disease
Symptoms can return with levels of stress or high fat diet. & People on LDN must eat gluten free. In June 2010, gluten free was something I thought a part of Swank-finding to my relief I was mistaken. Believe me, eating gluten free is quite the feat. But, I will happily return to it.
LDN is proving stunningly positive results in repairing or reversing the damage with MS.
MS affects the areas of the brain and spinal cord known as the white matter. White matter cells carry signals between the grey matter areas, where the processing is done, and the rest of the body. More specifically, MS destroys oligodendrocytes which are the cells responsible for creating and maintaining a fatty layer, known as the myelin sheath, which helps the neurons carry electrical signals. MS results in a thinning or complete loss of myelin and, less frequently, the cutting (transection) of the neuron’s extensions or axons. When the myelin is lost, the neurons can no longer effectively conduct their electrical signals. The name multiple sclerosis refers to the scars (sclerosis – better known as plaques or lesions) in the white matter.
It’s been proposed that naltrexone acts by reducing the production of inducible nitric oxide synthase. This decreases the formation of peryoxynitrite molecules, which, in turn, prevents the inhibition of the glutamate transporters. No longer inhibited, the transporters move glutamate from the circulation preventing excess glutamate from accumulating. This prevents the excitatory neurotoxicity on neuronal cells and oligodendrocytes caused by excess glutamate. Reducing exitotoxicity reduces migroclial activation and it reduces apoptosis (programmed cell death) of the myelin-producing oligodendrocytes. This in turn, prevents destruction of the myelin sheath covering nerve fibers. Destruction of the myelin sheath is the underlying pathology in MS.
Most certainly, the closest thing to a ‘cure’ .. especially since there is no definitive test to determine if this person has MS.
Yes, my Radiological Isolated Syndrome diagnosis from Johns Hopkins can mean a handful of things, one being I may be in the early stages of MS, thankfully, I do have a list of things I ‘can’ deal with but I have not dealt with MANY of the symptoms that people with MS must face. I can sit in heat for hours for example. It does not affect me whatsoever.
I am doing great. Even though my MRI reads differently. Again, ‘treat the patient-not the MRI’ .. but, to see me, you would never guess I struggle with anything..let alone an incurable disease. And, so far, all I had struggled with in the past, has been repaired by my strict diet, attitude, exercise, yoga, massages, sleep, removal of mercury, and serious, disciplined supplements.
Granted, even though LDN is farily harmless, I am told LDN should send me to the hospital if I do not have this disease. When I used to take risks, my Mom would say, “I don’t know if you are the bravest person in the world or the dumbest..” — Her humor still comes into play for me. Thank god. & I wish, every day, I had her here to listen to her witty, witchy-poo wisdom about all of this..or anything for that matter. But I do not doubt she would be proud of me for my quest for answers. And, if you were living in limbo, without answers, and yet you feared you did in fact have this, would you not make the attempt to find answers or more importantly, try to halt any progression? I know I would.~Incurable means curable from within.~
If I had to name the most valuable things I have learned so far. They would be: Listen to what your body tells you. Your body will react to what your brain tells it. & Every single patient is not the same when it comes to the same diagnosis.
As I started my life in Pennsylvania again, the first time living in my home state – since I was 27 years old, I was lost in thought. A warrior wondering where to attack next. What next move I would make since I was faced with something that still had no answers..everything was up to me. I was fortunate enough to had found a home near my two closest friends..Jacqueline & Roxanne. To list what they each done for me is so paramount, my words would never do them justice. Jacqueline continued what she always had done; making me a part of her family. Including us in family events, holiday dinners, constant calls to check on me, driving me for fun nights out, and laying out all the foods this Swanker could only eat-every time I went to her house. Rox, checked on me every morning wanting to know how I was feeling. And, then encouraging me to join her local gym with her. Both made a world of positive change for me.
Some mornings I did not want to go and she never gave up on me. Many times I was too overly stressed to take a call from Jacqueline or to visit, and she never gave up on me.
If you have lost your parents-who you were close to all your life, your grandparents were also deceased, your husband worked away six months of the year, your only child was old enough and mature enough to handle herself, and you faced such a nightmare..your friends literally become your family.
I am truly not asking for pity or sadness for me. I don’t feel sad, so there is no reason for anyone else to give it. I have always been extremely independent and I know I am so fortunate to have Bobby and Drew who both love me with all their hearts, and show it every day. Plus I know how lucky I was to be raised and influenced by two of the most amazing, rare people you would have ever met-my parents. Lastly, the wise elderly will tell you if a person has 3 true, real, best friends that consider you family-in your adult years..then you are on the right path. And, I most certainly, have three strong, independent, loving, loyal, admirable best friends who I consider my sisters.
I appreciate my past-who was in it and all I have learned. I know I have a lived a long, full life..and I am young enough to experience much more.
I know I would have had more friends at my aide, had I reached out. (*again, being overly Howard Hughes private is a fault as much as pride, selfishness, etc.,*) So that is my fault. There are many other friends I sincerely care about. I just kept the battling tale to myself..and never reached out. It’s not their fault..and I have learned even more so with announcing this on Facebook, something I was too scared to do. But now proud for doing so..there are so many I care for on there. But the ones I tried to tell? And, were once who I thought-important? Showed me exactly what I had known deep down, all along.
And, that is great news. Who wants to waste time in this short life to who doesn’t deserve your time?
Another person we should all have, is a fellow Swanker named Kerry. She extended her olive branch to me on the Swank board..and I truly believe many of those swankers would be starving if it weren’t for this chef. She is one of the stars of the board. While working on her Swank/MS cookbook, she will post her recipies, all Swank friendly, and all delicious so we don’t feel as though we are missing out on eating – while never going over what the diet will allow. She has and to this day, treated me as an old friend from grade school, who worried about me endlessly, shared her life story with me, listened to me when needed, while always giving the best advice.
Dealing with this disease herself, she has been nothing but positive..teaching me I was ignorant to the facts of MS. Encouraging for a student just learning. Every swanker values her immensely.
In the meantime, I continued to set up my agenda, alternate between five books at a time on brain lesions, workout at the gym every weekday, take an assorted high dosages of supplements, actually go to bed and sleep eight hours-something that was very new for me, continued to practice yoga-something I had fallen in love with five years earlier-during the Chantix nightmare. I was enlightened and empowered every day.
First on the agenda, I went to my new family doctor, as she nonchalantly went through my filled out paperwork, she asked, “any surgeries?” “any meds?” so forth, I then told her what the neuro in Pittsburgh was telling me and what I had been dealing with. She was blown away. “WHAT?” as she looked me over up and down. “I don’t believe it. Based on what?” So, I told her about my head pain. She was adamant in telling me what I had already learned, migraine disorder causes brain lesions..and it’s hereditary. “Do you have family who has migraine disorder?” she asked. “Yes, I do.” I answered. “Well, I have lesions on MY brain from migraine disorder! Maybe you have the same!” the Doctor said. I just shrugged it off, while holding on to hope..she then asked, “Does anyone in your family have MS?” .. “No, not that I know of..” I answered. Then she asked if she could do some MS tests on me there in the office. Talk about a thorough physical, but this wonderful doctor cared enough to take her precious time and look for this in me, so naturally, I was grateful to adhere to the suggestion and get her opinion.
I could not believe it, this family physician, done FAR MORE testing on me, than any neurologist. Tests I had read about – that should had been done all along. Blew me away. An hour later, she looked me straight in the eyes and said, “Listen, you do not have MS. You were misdiagnosed. I know it. I see it happen all the time because the early symptoms of this disease are so vague. The spinal tap means nothing. I have lesions. You don’t have this..” I secretly thought..’oh my god..please oh my god..please..’ But the realist in me told me ‘what DO I have then? Just good health insurance?!’ .. I then said, “Well I have an appointment at Johns Hopkins set up for a second opinion..” and she replied-adamantly, “You are wasting your time to go. You don’t have MS..”
Then that same week, it was time for the eye appointment. I chose carefully. I knew optic neuritis was an early symptom for MS and she could look behind my eyes to verify any damage. Along with comparing it to my last prescription from only a year ago, to see how different my vision truly was.. I knew my eyes were always pretty bad and every one’s eyes gets worse with age, but one of my lifelong fears were at stake. Going blind. Thanks to now being a “Swanker” — I know now that MS can take away your vision in one eye or both eyes, for a month or two and then your eyesight can be miraculously restored, out of nowhere. I knew rounds of steroids could speed up the process of rectifying this horrible event..but I did not want it to happen at all. Plus steroid treatment stories on the support group always had a crappy ending with side effects. AND I was working diligently, to find out if I even had this disease! And what a cruel, heartless disease this could be.
Same as my doctor, the optometrist listened to my story, studied me..and the serious russian accent reassured me it was a very common misdiagnosis, as she picked up her shiny tool to ‘read behind my eyes’ .. she put it down, and said, “Just as I thought..” — I was a cat in a corner with my back arched…oh god..oh god.. “it is completely pink behind your eyes, there is absolutely no sign of optic neuritis..& for you to be diagnosed with such a serious disease, there would have to be the smallest sign of that somewhere..” she said.
Whew. Even if they both are wrong. Sure is wonderful to hear it.
Next on the list, the dentist. My research told me many things could cause brain lesions that would mimic MS. Lymes Disease..*hmm..I lived at a wood line in WV for years & a test for Lyme’s commonly comes up negative when it’s really positive, not enough B12 in a body–*I began B12 shots, mercury from those old silver fillings from your dentist-*I had a bunch of those, & migraines. Lord knows I lived with those for years. The list went on and on..
So, as I lie in the chair waiting for my dental cleaning to end and the rich, Pittsburgh dentist to come in, I was actually excited to begin the three days of dental work to remove this mercury. Of course, I prayed the mercury was the culprit to the lesions (lesions cause all the sensory symptoms I had before the diet..) but I told myself even if it was NOT the mercury, any thing poisoning my body should be removed so I could continue my quest to a new life of health. Without health, what’d ya got?
& No, insurance wouldn’t cover doing this because I didn’t like the silver mercury in my mouth. What insurance company would? But it was worth a shot..therefore, worth the money.
When he came in the room, I knew immediately this was my guy. I craved for seasoned physicians, dentists, optometrists. I dealt with students for too long living in a college town for so long.
Like a broken record while longing for what I wanted to hear, I told the dentist what the neuro suspected. Just as my new family and eye Dr. both said, The dentist was shocked. “Really? you look beautiful! Well, this will tell you a lot if it helps?” he said.
Oddly enough-with the emotional distress, I am always an ideal patient. I let them do their job. I don’t flinch. I don’t move. Although, during the procedure, I was one of those irritating women who looked at the assistant to ask, “you are suctioning the particles flying out quickly, right? I don’t want to swallow any of the debris..” Luckily, I got to know her and she seemed to like me..so she respected my wishes and stayed on top of it. Three days later, all of the mercury was gone from my mouth.
AND IT WAS ONE OF THE BEST DAYS OF MY LIFE — IN THREE YEARS — MY CONSTANT HEAD PAIN DISAPPEARED!! Absolutely bullet free. I could once again experience what often wished I could. What it felt like to not have head pain. To eat, sleep, laugh, talk, kiss, walk, shop, clean, write, drive, read WITHOUT that dreadful right sided head pain that they once thought was brain cancer! I just could not believe it. I thought it was a cruel trick and I would wake up in the morning with that dull, yet sharp, consistent head pain..but I didn’t -and knock on wood- I still haven’t.
And, I assure you, I’m not one of those people who can ‘will themselves into believing something’ .. I have NO CLUE how to go into denial, how to lie to myself, or live the story book motto..’I think I can, I think I can.’ I do or I don’t. It’s either all or nothing with me. No middle ground. Just who I am. If I don’t sleep well or I have drank too much wine? Yeah..I will feel a little soreness in my head, but who doesn’t?
Now it was time for what I was waiting for. Johns Hopkins.
This was like getting to the Wizard of Oz for me. The almighty answer. The Elvis of hospitals.
Bobby didn’t want me to endure any more fear and he thought this was the best he had ever seen me, when others would run into me they would always mention how youthful and healthy I looked, and I did feel great with the diet, supplements, sleep, and knowledge. But this was the finale..and for me, it had to happen. I read up on the ratings of Johns Hopkins, how respected the MS department was, and I was told I would be put through many tests. I was ready.
It was a beautiful, autumn day. My favorite season. I was in a good mood. Until we hit Baltimore, then the nerves hit. But I walked in there determined and confident, someone was going to answer me. I was not going to leave in limbo. This was it.
There was no wait. They were the kingpin of professionalism. I checked in and had a consultation with three of the most intimidating doctors you can imagine. I told them how the sensory symptoms started with taking Chantix, how the diet stopped symptoms, how Copaxone gave me symptoms I never experienced, how the mercury removal stopped a grueling three year old head affliction. Handed over my MRI and spinal tap results..then the lengthy tests begun. A doctor said I will say four words to you and you are to tell me what I said much later. She then informed me of my ‘list’.. “computers, glasses, apples, sunshine.” I nodded.
Then, the next..One strength test of many I was to push a doctor as hard as I could. I questioned this, “Really? I should push her as hard as I can?” All three doctors nodded, “yes, she will be fine.” So..I wanted to show them I was not sick, so I done just that and she looked like a ragdoll as she tossled back. Two doctors pressed down on my arms as I was to use all my force to raise my arms-I did. Same with my legs. They done eye tests-with machines I never seen before, put me on a treadmill and timed me, I had to punch my way through a box, ran pencils up my feet to see which way my toes went..Hours later, one of the doctors walked up to me–“what did I ask you to remember?” she asked. “Computers, glasses, apples, sunshine.” I said.
They had done every strength, sensory, memory, and eye test you can envision. I passed. While Bobby watched proudly, looking at the doctors reaction as though he was thinking, “Told you so..”
Afterwards..I assumed they would do their own MRI and spinal tap, and I would have gone through them again, but they only had another detailed conversation with me about my migraines / head pain for so long. They then left the room to get the head of the MS department. Bobby and I were left alone and he looked at me to say, “you showed them..you are fine..you’ll see Dondalin..”
I was then taken to an office with a ten foot tall man who everyone obviously feared as they shuffled around him to prepare his coffee and paperwork. He sat us down…and said, “Yes..Mrs. Danforth, first of all, you are not RRMS. That is wrong..” — I was lost in thought, Oh my god..I’m finally going to learn the truth! Finally someone who knows what they are doing! He’s no drug pusher! He won’t discourage the power of what we eat and put in our body! “But let me show you your MRI. You do have seven lesions. And do you see these two lesions? how they are shaped and what they look like as in color? these are called black holes. That means your cells and nerves died in these two. You have what we call Radiological Isolated Syndrome, meaning we don’t know how this happened to you. I am surprised you are doing this well!” — “Um..I follow the swank diet, workout, sleep, meditate, do yoga, and take supplements..” I said. “Oh? Tell me about it. What is the Swank diet?” he asked. I went into detail who Dr. Roy Swank was and all he accomplished with actual patients and how he got MS patients out of wheelchairs. He listened but was not interested. Plus, I knew deep down he knew who Swank was. For godssakes, he worked in medicine. There we were again, my biggest insult, to treat me like a moron.
“Well, I don’t think that will help you..I think you will run into trouble..I suggest you begin Avonex shots..you can take your time to think about it. Call when you are ready to begin. We will arrange to send a nurse to your home.” I nodded.. “I know. Thank you, sir.”
Bobby and I left speechless. We stopped at a quiet, restaurant nestled in the back of town, we sat down to eat.. we both looked at each other and both of our eyes welled up with tears, while holding hands.
I waited patiently for my neuro to call with the LP reults. I waited and waited. Finally, I called him, ten days later, asking to speak with him. The minute I answered to his return call, I knew he didn’t have good news. His comedy routine had faded. He was now somber and professional. I, at the edge of my rope, asked him in a matter of fact manner, “Did you get my results?” “Yes, but a few other test results are not back yet that could look exactly like MS..” And with my inquisitive way, I insisted, “were the results positive? they were, weren’t they?” He cleared his throat, and quietly answered, “Yes..but I still don’t have other test results back and I really don’t like to do these things over the telephone..” I felt confused, disappointed I didn’t write down the names of the other tests he was waiting on, yet still determined to save myself. I only responded with.. “Well, alright then..” He then asked me to hold for his secretary to make an appointment to come in and talk.
That week was my appointment, in a different location in Pittsburgh, a much more frightening office with CAN’T LIVE WITHOUT YOUR BRAIN written all over it to me. Bobby and I met with him privately. He seemed to be chipper again, plopped down in his chair with a stack of paperwork and folded his legs. “Okay, Donda, you have passed every physical test-so you are strong, and your MRI shows only 7 lesions that are inactive..but your LP shows some abnormalities. I suggest you try a med called copaxone. I only get a dinner for a kickback..chuckle..chuckle..we will have a nurse sent to your house and she will teach you how to self inject yourself daily with the prefilled syringes. This is the safest med. There are only four. One eats your brain, it’s killing many people, the other has a high rate of suicide due to the side effect of depression, and the other is of no help..So copaxone is the way you want to go..”
I took a deep breath, wondering what happened to the man who swore I didn’t even have this disease and looked over to see Bobby’s expression that the neuro was still wrong. So, I calmly responded..and my questions surprised him. “Dr. first, what is my diagnosis?” He stammered and seemed unsure, but answered..”RRMS..Relapsing Remitting MS..” I then said, “How can I be RRMS when I have not had two exacerbations?” (*you must have two attacks/exacerbations, as in optic neuritis, loss of vision, many extreme occurrences to entail an attack..*) He said, “Well, usually people are diagnosed with RRMS early on. I think you are a mild case, it’s very early. And, if nothing happens in the next five years, that means nothing will ever happen to you..” I then asked, “Do I have lesions on my spinal cord?” He fumbled through his papers, “um..uh..nope..” (*One has to have a MRI on their spine to know the answer to this, no one ever done a MRI on my spine…only my brain.*) Still in shock, I was somehow able to continue with my questions from my long hours of studying this disease.. “How can you suggest a med when there is no cure for MS?” He was getting bothered now. I have found in the last many years of dealing with doctors, they will either admire your knowledge and a person educating themselves, OR others will be offended, thinking: “Hey I went to Med school not you!” But this was my life, and nothing was going to stop me from getting answers. He said, “Well, the meds are not to cure you..they are to help you from delaying any future attacks..” I said, “I don’t recall the first attack?” He then told me, “I just had a patient leave from here..a PITT student, 19 years old, and her MRI had her entire brain lit up like a christmas tree, which means she is in big trouble. It’s not like that with you, Donda, you only have 7 and they are not active. That means the attack already happened. The fact that they are not active is a positive thing. And if nothing changes for the next five years, nothing will ever happen..Just stick the auto injector in you every night with the copaxone and don’t get stressed out. That’s dangerous.”
Oh..No stress. No problem, I thought. Boy, he really is meant to be a comedian.
I then only answered, in a very polite manner -of course- I wouldn’t do it any other way… “I don’t know how you could have held my MRI before and be sure I didn’t have this, but you get an abnormal tap and now are sure..when there is no such test that determines MS.. A spinal tap does not even answer that question. But, thank you for your time.”
He made a joke how I could take his job and handed me the copaxone prescription. Getting me on that med was what seemed important to him about that meeting.
All my reading told me to fear the meds. And, since the original med that scarred me, chantix, now states a side effect of the anti smoking med is Multiple Sclerosis! (exactly when my symptoms began, on Chantix..) I was not an advocate for meds, nor did I trust any Doctor. I thought of how the hospital continued to wheel my Dad down to radiation even though it was obvious he was going to die any second from Lung Cancer. I thought of how my Moms doctor told her “NO CANCER FOUND” but she was in the final stage of Uterine Cancer. I thought of how my Dr in 2000, told me I needed a bladder transplant-all to find I had a healthy bladder but a Fractured Pelvis from a car wreck?! From my personal experiences, I simply did not trust a doctor just because he was one. And it sure the hell didn’t help that most doctors get paid or receive some sort of kickback for pushing a med to their patients. Sure, of course there are some wonderful nurses out there. I’ve met them, I’m related to them. Yes, there are some amazing doctors who do exist. My family Doctor being one. Dr. Swank another. (who didn’t believe in the meds for MS.) But you would have to put yourself in my shoes to understand where my negative paranoia came from.
But..I wanted to help my family and myself in every way. At this point, in mid June 2010, I had been on the diet for six weeks at this point, new to all the many supplements I started-which take time to start helping, and we were moving into a new home Bobby and I finally found in PA.. and a move that could not had happened without the help of my dear loyal, cousin Scott & our best friends, Jacqueline & Chad. Drew knew what was happening at this point and knew we were trying to protect her so she was all for the new beginning in PA. Thank God.
The nurse came to our home to teach me how to shoot myself up every night. Right arm, right leg, left arm, left leg, left thigh, right thigh, stomach, all the points I had to take turns, every night to take my copaxone..and pray it helped me from having future attacks. Even though the percentage was small, I thought I should do all I can. Even though, once again-I did not realize I had a first attack?
The nurse and my reading informed me the pain of the shot..the med shooting through my system would be a very painful experience. And it could damage the skin if I weren’t careful.
I came to develop a system with warming my skin first..either in the shower or heating pad..every night I prepared the chosen spot for the night, and shot myself up. Yes..they were right, the pain was pretty awful. But I grew up on a farm and it felt like a hornet stinging me. That’s exactly what it reminded me of. I done it every night with ease. Clean, apply alcohol, warm it, shoot it, hornet sting that lasted ten minutes later, it was over.
The problem was the more time went on with taking this med, the more I developed symptoms I NEVER had! And at this point I knew I needed the support from people doing what I was, so I joined a support group: http://18.104.22.168/cgi-bin/yabb/YaBB.plWe call ourselves Swankers.
The ones who believed in the healings of Dr. Swanks findings..while leaning on each other with insight, humor, support and positivity. They became my lifeline. I found many Swankers did not believe in the meds, while the ones who had and done them, gave input on their experiences with the shots. (All MS meds are prefilled syringes.)
The more I read and the more I followed my intuition, the more the I knew – I was not supposed to take this medicine. I honestly can’t tell you why. I just had to find a different avenue. One that fit me. One that felt right.
As I grew to have more mysterious symptoms I never had before, I also grew more angry. Copaxone who wanted my insurance money assured me it was the disease. But I never felt angry till the med got in my system! One day as I seen my neighbor weedwacking down flowers behind our new townhouse, I had no control. I became far from the polite, kind, lady my Mom brainwashed me to behave. I stormed outside, “Did someone tell you to F****ing do that?!” I yelled. He looked surprised, he was elderly. I always was extremely kind to the elderly and children. What the? Who was I? How did that just happen? He turned it off, turned around, and started to explain. As I was shocked to what I just done. I profusely apologized and stopped taking the Copaxone for good, starting that day.
And it was the right thing to do. Not just for the elderly neighbor. But-after stopping the med, within four weeks the mysterious symptoms Copaxone gave me, STOPPED. And, I was now on the diet for twelve weeks at this point, and my burning arms and pins / needles had stopped completely.
I was taking a gamble to give up the one med that sounded the safest, but I still didn’t have answers. The neuros still weren’t answering questions. I was learning more and more the many diseases that mimics MS. I was discovering every day the long list of possibilities to brain lesions. It was time to go back to trusting myself. And, more importantly, stick to the diet since it was the one med that proved itself to me thus far.
I was about to embark on a new day to day life..in which I will soon explain. It was time for a new path to improving my health. First, I set up an agenda. I set up a new Dentist to remove all the mercury from my old amalgam fillings in my mouth, (yes, mercury poisoning can cause brain lesions..) I bought all the books I could find on lesions, and most importantly it was overdue to get to a second opinion, so I set up an appointment at the number one hospital in the country, Johns Hopkins…
After my useless phone conversation with my Doctor. I miraculously went into fighting mode. I was always a big reader .. but this brought me to become a research junkie and obsessive with medical journals. I never read ‘Joe Schmo’s blog’ (no pun intended) .. I focused on the experts. And as much as I wanted to believe I did not have MS, I thought I should read about what was said to me. Period. So, the first thing I looked up online and in the libraries was anything and everything on Multiple Sclerosis. & The very first thing I googled was ‘How to Help Multiple Sclerosis’ .. I found an amazing doctor by the name of Roy Swank. He had 55 years of experience with reversing or repairing the disease by what food was ate. Ludicrous! I thought. How can food make such a difference to an incurable disease? But I read, read, and read some more. Before I was ever told I had anything in particular, I’m still not sure what I have, but I started the Swank diet. No red meat, not going over 15 grams of saturated fat a day, no chocolate, no dairy, egg whites only. Many, many rules. I was never a big eater, so I was fortunate enough and able to take the diet seriously to accept the changes.
Bobby was old fashioned enough to hate it right off the bat. “You can’t go on eating like this! You’ll die!” But I kept telling him and myself, this amazing man (read Swanks bio) had proof. He had concrete evidence and that was good enough for me. Whether I had it or not, they suspected it, so I should start the one thing I could find, that could help me and our family.
During this time my oldest friend, Jacqueline, had her family refer a neurologist to me in Pittsburgh. I immediately set up an appointment. While still never hearing from the first useless young doctor on the neuro they wanted me to see. Little did she know I was done with her after our phone conversation and fruitless efforts with her for far too long.
My stress waiting for the Pittsburgh neurology appointment was absolutely horrible. My head hurt more than ever, my arms burned to no end, my legs hurt so badly I had to apply bags of ice to them. The stress was mind blowing. Believe it or not, the unknown, mentally, was worse. *& I have now come to discover stress is a killer to someone with lesions on their brain.*
All the while avoiding calls, texts and emails. The last thing I wanted was for others to know I may be sick. A downfall to being private…others knowing what misfortunes you endure.
The day finally came. I went to meet the neuro in Pittsburgh, with my MRI results in my hand.. and even though my arms looked like a drug addicts from the previous, much amount of bloodwork the hospital took from me, they seemed to find more veins and spots, over top of the purple & black bruises, and take some more. Much more.
Then the all important man himself walked in the room. Youthful looking, dressed in golf garb, and smiling from ear to ear. Eager to meet me and show me his comedic talents. As I still held my own and was who I learned to be from my mom, regardless of what was really going on in my mind. A lady, private, pleasant, charming, calm.
The first words out of his mouth. “Well, I have looked over your MRI..” As I was on the edge of my seat, trying to sit up and not show the awful Morris posture I have, fearful to give him the impression I have a disease and not just a crappy back! While looking over at Bobby, the love of my life since I was 17, smiling at me in confidence, that I was fine. The neuro said, “I’m going to do some strength tests..” And we did. I passed. “Now let me see you walk across the room.” I protested, “Um..I have horrible posture, but if you seen my Dads side of the family you would know I get it honest..” He laughed and made yet another joke. Then he went over symptoms with me. When I told him about my head pain he waved his hand and shrugged it off..’that means nothing..’ he said. I then mentioned the pins and needles. He again, “oh that can be because the band on pants..means nothing..” As he considered it all meaningless, I thought this was all one huge mistake on the medical community part. But again, don’t treat me like a moron and tell me jokes, I thought. Pants causing pins and needles for three years. Frustrating.
Finally, he made his announcement, “I don’t think you have MS. I just don’t.” I could see the relief in Bobbys face but my instincts told me, yet again, something is being missed.
I asked him, “So what do the lesions mean?” He replied, “Oh they could be from an old infection. Measles. a flu that never cleared up. Migraine disorder…many things..but I don’t believe you have MS. But I will give you a spinal tap to reassure you.”
As Bobby and I left the office, the feeling of a new life I was given was overwhelming. Yet, my gut told me once again, “they are missing something..this isn’t right..” I didn’t know why..but it felt off. STILL my release from hell and hearing those words from a medical professional who specialized in brains was good enough for me! As I walked out the door, I felt as though I was given yet another chance to the many times I came close to an end, I kissed a leaf of a tree blowing in front of my view. Bobby laughed. We were thrilled.
My Mom always said, and we all would crack up, “DondaLin can fall in shit and come out smelling like roses..” Pretty raunchy, I know, but if you spent time around this elegant, feminine woman, it seemed okay for that to come out of her mouth? Only her. Well, that phrase was what I heard over and over in my mind. And, I felt as though I may have missed a very close call to something I did not want to learn about..let alone take on. Although, I told my steak loving husband, I would stick to the famous, healthy Swank diet..just in case.
Now, I had to get through the lumbar puncture.
The spinal tap (LP) seemed like a lifetime away. But, Bobby had to leave for work and I was left to my obsessive reading..while keeping it all from Drew and other loved ones. While believing I can’t dare tell others..they will see me as sick. God forbid. I had too much fear for me to go on as I had. I could not be the friend who was always there for others problems, the happy go lucky life of the party, the positive one that always had a smile for others..while looking for and playing endless music. I just stayed quietly, at home..reading medical journals, researching how to improve on an incurable condition, starving, studying about supplements, while Bobby and I discussed the importance of moving Drew to Pennslylvania .. just in case she needed help while I deteriorated.
Again, if you know nothing about MS, you believe with all your heart, the luxury of walking and seeing will be taken from you.
I had my choice to where I wanted my spinal tap done. Naturally, I chose the hospital I trusted the most..where I gave birth to Drew..and where they treated me like Elizabeth Taylor. Mom always said, “you got that treatment due to your blue cross..” — Probably. Lord knows she was never wrong.. But..nevertheless, I was treated like a movie star there. If I had to get a needle as long as my body shoved into my spine, I want to go where I felt the safest. St. Clair.
The time had come. Bobby and I checked in..as I looked around I found myself in a whole new world. The all too soon, familiar smells and sounds of a hospital that I was not ready to relive since being in hospitals so often from the deaths of my parents, I calmly looked around and all of us strangers looked at each other with the curiosity of why we were each there. It was a beautiful May day outside, my best friends were dressed up – at a Dance recital, I was receiving texts being invited to barbecues..while a nurse was wrapping my arm to find veins..for the third time, third hospital, ten tubes of blood from my already sore, black and purple arms.
The tall, handsome doctor came in and went over the procedure with me..then warned me the rare chance of having a ‘spinal leak’..a medical condition in which the cerebrospinal fluid (CSF) held in and around a human brain and spinal cord leaks out of the surrounding protective sac, the