Fill Your Bottle Up~

I’m still here. I’ve answered each letter so hopefully they all went out properly.

As much as my private personality tells me to keep it to myself, I still let it all out at health seminars, writers meetings, and in the manuscript. For those who have asked, it will happen. Unfortunately, I’m my own worst critic and a perfectionist. I will go back to something repeatedly to get it just right.

As for the people who yearn for good news regarding thyroid cancer, I know for me even though the radiologist jumped the gun at first I received a clean bill of health and I discovered in NY, the cancer did not return. I’m finally level with my thyroid replacement, the anxiety and fatigue is gone, just when I think I’m about to have anxiety or pass out from the day, I don’t. Terrible how things that have gone on for so long can make you think they are forever. They don’t have to be. I’m also no longer out of breath, I’m thinner now than I was before I got sick, and I am a content survivor. Anything worth having, you MUST give it patience and perseverance.

If you lost a parathyroid gland or more, you should keep tums by your bed. Crazy, right? But they work. If the body lacks calcium you will experience some scary symptoms, along with neuropathy. If you simply take two tums and a calcium supplement, (the citrate type), the symptoms will go away. If you do nothing, you will end up in the hospital. You will also learn thyroid cancer can cause brain lesions.

So, it’s natural for the female body to go into early menopause after a major surgery, sugar should also be avoided. Especially if you don’t have a thyroid because you have no natural organ to help control your heart rate. Finally, don’t touch soy. Calm down, I eat sushi all the time, it can be done.

My elation of success, knowing how large that tumor really was at my trachea, all the times I huffed and puffed, and walking around clueless. I still carry guilt knowing of others who didn’t make it. A sixteen year old, for one. My Aquarian nature puts me in an automatic drive of feeling aloof and distant to what really has happened to me. I still care about all of you who have written, asked, cared for this blog, and the people searching for something positive. So I’ll pass it on, live all you can. Not the reckless kind. Actual living where you can look proud into the mirror. Making true attempts to make yourSELF better will put into action for you to be happier within, where it counts.

Last but not least, what I have learned from having cancer may have been the best thing that ever happened to me, but when you read or hear “thyroid cancer is the best cancer to have”.. Either immediately punch them in the face, or ask them how it was for them. I doubt they will have an answer. The ones that haven’t been in a particular place, or don’t know all of the facts always have the biggest opinions with no concrete experience to back it up.
Be good to yourself~

** Jerri, these songs are old for me. 😉 But Kacey Musgraves also wrote and reluctantly gave up:

For your “one”:

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2013 in review

The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 1,500 times in 2013. If it were a cable car, it would take about 25 trips to carry that many people.

Click here to see the complete report.

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Merry Christmas and Cheers to a Healthy 2014~

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Bewitched~

So much for the book I never wanted to finish. As much as I hate the recent answer I’ve received, I sure do value answers to mysteries. And it’s my moral duty to report this. I want to enlighten other women without a thyroid. As well as others who suffer with Lyme disease. 

Most recently, as I continued the journey of trying to figure out why my body was rejecting natural thyroid replacements such as; Naturethroid, Armour, and NP Thyroid. Women on thyroid support groups were in awe I have a doctor that goes by symptoms, not blood and one who is against Synthroid. A dream according to these women. One late night during an episode of insomnia, I was avidly reading, when I came across this sentence, “If a person has Lyme disease, their body will reject a natural thyroid medication.” My immediate reaction was like being hit with a hammer. I shot up in bed, reading it again to absorb the information that I knew rang all too true. Having the mysterious neuropathy in my right foot for almost two years, my laid back attitude was clouded by the out of blue anxiety, without the attacks. The burning limbs from the Naturethroid put me in a time machine of reliving the Lyme symptoms. 

I dreaded my upcoming doctor appointment, but knew I could not live without a thyroid replacement so off I went. As I was anxious to find out if my saliva testing showed that I am premenopausal, this amazing and famous doctor that took on my file after my last beloved doctor moved away, looked at me to ask, “Tell me about your Lyme, what were your symptoms?” while he looked at my brain MRI, I explained my neurological symptoms. Neuropathy, pins and needles, head pain, and burning limbs. He then said, “Donda, I’m thinking you have chronic Lyme and the natural thyroid medications woke it up so to speak.” My reply was simple and honest. “Sir, I’m not surprised.” The doctor continued on to explain that chronic Lyme is argued in the medical world to not be real but patients like myself are living proof, and that he believed my long treatment of antibiotics as well as “bold move” to consume colloidal silver temporarily shut off that part in my immune system all to have the cancer and thyroid meds wake it up. 

I felt nothing. I wasn’t disappointed, surprised, affected in any way. Just truly thankful for an answer. He then quickly added, “I have a serum in the lab to shut it off in you again. Are you interested?” I couldn’t have said yes quick enough. The doctor and another doctor, who joined in the meeting, explained they were trying to create a Lyme immunization and created this by accident. The serum had to be tested on me to see if I did in fact still have Lyme. The doctor added, “You can’t always trust blood tests for these things.” (Yes. This is where I shared the MS misdiagnosis story..) He replied, “That all makes sense. They don’t test for all the Lyme markers in basic Lyme tests, but I have your Lyme markers tests right here and people only have to match three to have Lyme. You had all five. So, lets go try the serum and if you feel better, you still have it in your body and we can then not cure it but shut it down.” 

As I followed him into the lab I thought of witchcraft. Come on! How can this be? How can they turn off an autoimmune disease. Naturally, I looked at the lab technician to question it. She reassured me this test would tell all and the ‘vaccine’ would shut off that part in my body that carries Lyme. She asked me to remove my shirt and she injected me with the liquid then handed me a timer and worksheet. I was instructed to write down any good or bad symptoms I felt along with the time. As Bobby and I sat he asked, “Do you feel anything?” I said, “No. This is crazy. I’m not buying this.” Six minutes later I felt dizzy. Wrote it down. The timer went off and I reported back to her. She then injected me with the serum, told me to do the same. Eight minutes later, I was in awe, I pushed my flip flop off and said “Oh my god, my neuropathy in my foot is fading! That can’t be!” 
Timer went off.
I go back to her and she shot the serum under my tongue and told me to not swallow it for two minutes. At two minutes, I swallowed and was rushed over with a massive amount of euphoria. Just complete happiness from nowhere. A surge of insurmountable energy and happiness. I went to her and asked, “What’s the stuff you put in my mouth?” She answered, “That’s the vaccine.” 

I then asked, “So I still have Lyme obviously?” She rubbed a liquid on my shoulder and circled it. She said, “Tomorrow morning if you have raised skin here and it’s red, you do. And this vaccine will make you feel how you feel now.” 

As I was leaving, the doctor was excited to ask what he knew and I didn’t originally believe, “Did you feel fantastic and happy when you took it?” I said, “I..uh.. YES! I feel amazing!” The doctors and secretaries were cheering me on and were ecstatic. Although, they weren’t nearly as happy as I was. (During the ride home, I felt like a thrilled problem free 22 year old.)

The main doctor ended it with looking at Bobby to say, “I want you to understand her level of stress is at a level you and I could never grasp.” He held his hand to his forehead to say, “Her Lyme has her body up to here in stress and discord.” Then he held his hand over his head, “And a woman without a thyroid, and no replacement medication has the stress to here. We made a huge difference today. You’ll both be able to relish in it.”

This morning I looked at my shoulder to find it red and the skin raised. Am I bothered that I still have Lyme? Well, no. Here’s why, I called the lab to inform them. I am now holding my freshly mixed ecstatic 22 year old serum. If I led you astray in any way, keep in mind I always warned that each Lyme patient is unique. However, in the comment box on the copyright tab, write me a private letter and I will happily give you the doctor and location for you to ‘shut off’ your Lyme as well.

Thank you for your support. Be Well. ~

UPDATE: The potion was a snake oil. I had cancer all along. My body was devouring any and all nutrients.

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Chemicals~

Well well well, I need a stiff drink.

I’ve caught up with this game. My last problem is all cleared up with the thyroid replacement, NatureThroid. I learned to accept the longer I took it, the closer I’d get to drop dead from heart failure.

Regardless of how crappy you feel, you just have no other choice but to start with one grain, split in morning / evening doses and stay on it for two weeks, before moving up one fourth on the fourteenth day.

In other words, walking around under medicated with no thyroid.

Utter torture.

When a woman loses her thyroid and discovers just how vital of a role it plays, you’ll also come to realize it’s time to be your own doctor once again.

Endocrinologists push Synthroid or Tirosint, whether it works for the person or not. Face it, no matter how much you love a doctor, they get kick backs or donations to their facilities for the meds they entice you to take.

Even against my wants and making it clear, my body is sensitive to medication. The Synthroid almost killed me. Seriously, it only worked immediately after the surgery. Tirosint caused my healthy heart to have abnormalities. I then was able to obtain Armour. An olympic feat in this scenario, mind you. All for it to be reformulated and make me desire to vomit from even the scent of food. Eating? That ability had left me with popping the Armour. All who are near and dear to me can tell you I am no big eater. However, I do like seafood, fruit, nuts, sushi, once in awhile a filet mignon, and cream cheese. I do eat! With the Armour, nada. 

So after two visits in the hospital, I was off to the next. NatureThroid by the suggestion of my internist. As I was running three to five miles a day, and talking at a supersonic speed. I realized my laid back easy-going personality was affected by medication. The almighty new thyroid landed me heading for hyperthyroid land. Now, women in my shoes may make a joke or two to be made hyperthyroid because you’ll quickly become anorexic, but trust me you’d rather be hypo as opposed to hyper. Anyone who is experienced with this would agree.

More importantly, you’ll continue to live being hypo and medicated.

Being hyper and medicated will kill you, quickly.

As my search went on while reading one night, I learned most thyroid meds contain cellulose, lactose, or both. I have a slight lactose intolerance. The doctors assistant told me the only thyroid replacement that is lactose free is Armour. I knew immediately there were four that were lactose free. It did not please me in the slightest to do her job but that’s just what I did. 

You are your only and best advocate.

Naturally, I’m concerned my body will reject the new protocol but again, I’m ultra medication sensitive. And there’s always three more to try.

Other than the horrendous sickness of not being medicated or under medicated, knowing the higher my TSH the more likely the cancer will return is what can be bothersome to me. Unfortunately, thanks to NatureThroid my TSH is through the roof.

Since the meds have to be moved up slowly for ones heart and doctors live in fear of killing you, therefore losing their careers, all I can compare the adjustment periods to is playing Russian roulette every six weeks. 

I recently said I wasn’t sure if I could remember the last consistent time I felt healthy. 

As drained as I am with all these years of all these health challenges, luckily I’ve had enough scarring situations happen and the instinct to know there will be an end. A happy ending.

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~Life And Death Of Hope~

For Holly & what you done for the end of her days. ~ You are the definition of love and friendship.
********************************************

As I continue my journey of living without a thyroid wondering if the cancer in my neck has returned, and getting ready to head to NY to see if it has, while being told it so easily can the first three years and being sure the thyroid replacement is working properly. Life continues on.

In thought, this cacophony of sound as one could imagine, is quite loud. As always I keep my cool, though.
Bitter less, grateful, and positive.
I have more good, than I do strife.
Although, as I told my doctor I don’t enjoy in the slightest, the attention or questions from others. (Even though I know they mean well.) Headed to NYC at the six – eight month markings is reminder enough. Bobby always says “I’m just like my mom and I don’t want to be a burden to anyone.” He knows me very well.

I couldn’t be more tired of worrying my loved ones, living in fear my sweet daughter will find me from heart failure (yes total natural thyroid replacement doses can cause this..) visiting a doctor, rushing to the doctor, listening to my body day in and day out like a nagging relentless diva, or the throbbing loud heartbeat as it pounds through my chest and I calmly count the beats, watching the clock. Paying attention for the signs of toxicity, a heart attack, or hyperthyroid.

Also to recently surviving a close heart attack from over medication.

My heart has been verified to be healthy. The medication is what almost killed me. After all that’s happened, Ironic.

One of many recent perks, I refuse to get intoxicated. I drink moderate wine on occasion but Health and medication absorption will wake you up in more ways than ten. Perfect timing as well since I’ve grown to loathe walking in to a bar.

If you’re wondering, yes. I worry for my trachea, and have my moments where I miss my ole thyroid.
My family finds that comment upsetting. “You mean the one with cancer?!”, they’ll ask. But other women who have been in my shoes know how the battle rages on during work, play, and relief from where we have traveled, understand my words.

Unfortunately to take my mind off of it all, I’m suffering from utter heartache and shock from a recent loss in my brothers family, a subject I can’t even touch on, and a childhood best friend of mine recently died from lung cancer.
44 years of age. Full of life, hilarious humor, fighting for her freedom ever since the days of her mom keeping her home from the simple football game. Last week she lay on her deathbed, and I envision for her what I had seen when my dad died of lung cancer. A slow painful death.
Thankfully, the cancer was quick but slow enough for the pain.

I am relieved her suffering came to an end. Her life is where I mourn.

As always, most people from mine and “Sarah’s” hometown are quick to judge others before themselves. Sarah made some scandalous choices in her short life, and she ultimately paid the highest of price for them, but she was running from her upbringing. She was in a constant rebellion. I witnessed the truth. Sarah’s 44 years, were 44 years of pain with the facade of humor to hide her relentless inner turmoil.

In afterthought, I can relate. As my beloved mom always said to me, “You are a true rebel”. Thankfully, I have been or the steroids from the MS misdiagnosis would have killed me two years ago, since I really had cancer all along. My rebellion has kept me true to who I am and helped me continue to fight, fight, and fight some more in this never ending circle where we all just want to live realistically calm, event free, and emotionally released from our childhood, hopefully healthy lives.

Doesn’t seem like much to ask for, does it? I still have the faith for myself and others.

~Take it away and but I want more and more- For Joy – One day I’m gonna lose the war.
Rest in Peace my forever friend.~

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Magic~

Ask your doctor for SO Antigens. It tastes like salt water. Four doses a day.

Since living without a thyroid and coming out of cancer is a feat in itself, I truly didn’t care about my incision from the surgery. I simply kept Vaseline on it.

My new doctor gave me the SO potion. I thought, ‘what the hell’… & Here’s the difference for me in one week. *The before picture being from one month ago.

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Posted in cancer

Pain In The Neck~

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.

photoThe 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.~

 

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Seven Years~

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 cancer in your thyroid which had spread to your trachea, 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 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 Thyroid 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.~

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Another Chance~

Ouch. 

I feel like my throat was slit. The people who noticed me on my walk in NYC thought so too, I saw it in their eyes they were guessing I was mugged. 

I didn’t mind though. After being released from the fancy hospital room, due to either my insurance or how the entire staff mentioned how polite I was,  I was told to take walks so I don’t develop pneumonia or blood clots and to work out the anesthesia from my ‘clear’ lungs.  🙂

I walked proud, even though I’m not allowed to look up, I felt proud. Bobby and I walked plenty on the streets in New York until my stitches came out a week later, then flying home in the necessary first class to continue my recovery.

A common person doesn’t give much thought to how important the neck is until surgical tools are inserted into it.

I feel like something poisonous was removed from me. I can actually feel it.

Assuming not having my cytomel or LDN intake would cause my soon impending demise yet discovering those things only kept me afloat while I unknowingly carried cancer, eating away inside my neck. I am extremely lucky, blessed.

If anyone ever brushes off the idea of what health issues we each carry as being meaningless, that’s crap. Not true.

Yes. We all carry cancer cells. 

Yes. We will all die from something.

However, if you’re in present danger from the cancer cells? You’ll know it. Things won’t feel right. Something will be off. You will be lacking, health wise, somewhere. I promise.

Just like a flower with dead buds, all of my nutrients and healthy cells in my body ran right to the sick part of my body as the rest of me was suffering without knowing exactly how much. Now I feel like how I should even though I don’t take twenty supplements, cytomel, or LDN every morning.

The surgeon had to do a complete Thyroidectomy, with the main tumor sitting directly on my thyroid, cancer dangerously connected to my trachea. also removing a parathyroid gland which was wrapped around my thyroid, “rare” he mentioned,  and no longer supplying calcium to my body along with two tiny spots of cancer on the left side of my neck. 

After wanting to know what happens to the hole in my neck from waking up to a tube running down me with a drainage bottle attached to it and being amazed the hole did in fact turn back to skin after 24 hours, once the tube was removed.

As I turned away the highly addictive pain pills that only make me itch, the one and only pain I feel now is the slight ache in my neck from a major surgery. I am told it will end after recovery. I feel better every day, so evidently thats true. 

I have not had any of the symptoms I’ve carried for years and not knowing why. My diseased thyroid/trachea had me sick all this time. So far in recovery, I’ve lost pounds without trying, I’m told my voice will be different for awhile; my speaking voice is the same and I’m walking around singing to get my vocal instrument built back up. It’s for my own satisfaction.

I have a new outlook on life as well as my past, this proved once again I’m married to my soulmate and best friend. My daughter told me she realized she never wants to live in a different state than me. (Music to my ears.) The best part, I have no symptoms as I take one pill as soon as I wake up to replace my thyroid. 

A few close friends have mentioned how “healthy and amazing” I sound. 

A few more have a new lease on life in particular area(s) in their lives due to my facing this situation that could’ve went a totally different way. As Bobby repeatedly said with his tears, “They could’ve said something so different.” 

I’m truly moved. 

I’ve learned like I’ve never learned before and that no medical journal will ever teach you. Sadly, you may be one of the people that have to face actual death to wake up. Since you really don’t know what it’s like, unless if you’ve been there. If you can take anything from me, take this; what’s on the forefront of your mind every waking day? What’s your priorities that you’ll care for over anything else? What is more important to you than you? Do you act on it or say it? What angers you? Are those your same choices if you were aware your absence and death would be soon?

Your answers may be different if you actually face it, so be as honest as you can.

Something to chew on…

To yourself.

Now you may be wondering, what will I write about?
Well, my history makes me feel as though I’ve been here for ten lifetimes.
Can you believe I have a ton of more stories to share? 

I’ll be back.~ 😉

Hold your stomach, here’s the before and after pictures:photo

 

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Bright Lights New Life~

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Here is the view from my beautiful hospital room.
I will spare the blog followers a picture of my neck until it heals. As I told my close friends, “small price to pay for the cancer not spreading”.

As Bobby finally fell asleep beside me on a pull out bed, I couldn’t feel happier to have been told the cancer didn’t spread and my lungs are totally clear. I was very nervous of being told something different on the lungs due to my many years of being a former smoker. (Thank God)
The doctor and staff also praised me for being extremely strong since I was able to laugh, talk, eat after waking up from the anesthesia following the four hour Thyroidectomy. It was easy since I love New Yorkers..they feel like old friends to me. I easily connected with all of them.

Now as long as the cab driver doesn’t kill me on the way back to the hotel on Friday, I will be back to the beach soon. 🙂

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The Last Of The Doctors~

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

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The Art of Letting Go~

As I write this I can’t find enough words of gratitude to express what I’m feeling at this moment.
My surgery is still set for Wednesday in New York.
However, my only fear regarding the surgery, my lymph nodes having cancer and the cancer spreading has been answered. The lymph nodes are clear. The hospital called today to let us know there is no cancer in my lymph nodes!

Dr. Morris explained my cancer sits in a too fragile place to not do the surgery.  The thyroid gland sits just below the larynx (voice box), The thyroid is on top of your trachea (the windpipe), and my cancer sits right at the windpipe. My thyroid has Hashimotos and there are two very small cancer spots that sit to the left of my neck (where they considered suspicious last year) hence, a much needed Thyroidectomy. I’m told once the cancer grew it would have killed me way too early in life.

I have discovered he has a perfect surgical record and according to him, all of that will be removed and I will be in recovery for two weeks. He commented that I don’t have neck wrinkles to make his incision but he’d be sure to use a nerve monitoring stimulator to avoid hitting any nerves and the incision will be small in the center of my throat. I mentioned I liked him, right? 🙂

I have a strong feeling the champagne I pop open with my loving, relieved husband before the flight back to NY will be the best ever tasted. The getaway Bobby and I take after the recovery having the bluest of blue waters with our brightest of smiles will be the most serene of all. This Sunday’s Easter service the most stirring with my family. The rough recovery in New York spent with an inner calm of every bit of pain, soreness, healing I have ever felt.

This experience, this eye opening ordeal unleashed a new life for myself. I’m ashamed it took hearing those words to live even better than I already was, but what counts is the journey brought me to where I should be, mentally and physically. Back to complete health.

“Truly, I’m not joking when I thank my lucky stars for the awful operation I had, since it has made me young again and philosophical which means that I don’t want to fritter away the new lease on life I’ve been given.”
~Henri Matisse

**Due to unwanted spam my blog may be made private. If it does by all means, request to be invited as a follower and I will happily invite you. To the present followers: let me know and I will invite you back. To my friends & family: I owe you all so much for the support. It will never be forgotten.
~Be Well~

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If I Can Make It Here I’ll Make It Anywhere~

It’s been a long day.
My throat endoscopy was fascinating. Also reassuring since the pictures of my throat were pink and healthy looking.

Attention: To anyone who has had an ultrasound, if it wasn’t done at Sloan-Kettering, you should feel insulted.

I always follow my gut, I had a long consultation with Dr. Morris. Not only do I love his last name, I felt comfortable with him. He reminded me of my beloved brother, Duke. He’s not going to cut you open unless he thinks it’s for your own good. I’m just like my mother, if there’s one thing I know besides music, it’s people. However, I’m in a predicament. The doctor thinks my cancer is large enough to remove and yet everything I wrote on my previous blog is right, I could die with this in my throat but of another cause. Although, I need to attack this while I’m “young and healthy”, as he put it. The doctor also thinks the tumor is too close to suffocating me in my sleep. The down side, I don’t know if it has spread. (Exactly what I don’t want..)
Right now, I’ve had a fantastic weekend with my family, I’ve had a beautiful Italian dinner with cocktails and am in a stunning hotel room in Manhattan until I hear if the ultrasound, endoscopy and blood work shows its in lymph nodes or not.
As for now, the surgery is scheduled for next Wednesday. If the cancer isn’t in my lymph nodes or through my neck I may go back to my warm, cozy beach and live bigger than ever. Wishful thinking, I’m sure.

Food for thought; I befriended an employee at the hospital. As she gave me pre-surgery details I felt comfortable enough to share with her if the cancer shows in my bloodstream or lungs and has spread, then I prefer to walk away and when I drop dead, I go. I let her know, “Be honest with me, I can take it.” She replied, “I can tell you can.”
Shockingly and impressively enough, she wholeheartedly agreed with me if it has gone past stage two. She said she knows of people who were in the fourth stage, they decided to live out their days and enjoy life. They outlived the patients being treated at her job.

I’ll never go to another hospital. They think like me. If I go forward, I’ll check in next Monday. As for the friends who checked on me all weekend, I’ll never let you walk alone.

Make every day count. Literally.
I will. 🙂

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I’m so relaxed for my consultation..

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Inspirational & Immeasurable

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A Story my Girl Needed to Hear~

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. lo

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.

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The Most Important Road Trip of All~

Since I express myself through writing or music, I will choose writing this evening to get thoughts off my mind.
I am wide awake.

NEVER fails. This is how life works. I am happy, working, fit and in shape, mentally strong, and for the first time in my life content with where I lived.

I needed to find a new Dr for my Hashimoto’s; an auto immune disease brought on from my Lyme Disease, that can so commonly happen. My beloved doctor that found the Hashimoto’s had relocated. That man is a rarity, he truly treated people because he cared. I will never forget at my last appointment with him when he quietly told me he was having issues, so he was going to move on to his hometown. I went into a frenzy. It’s humorous to see me in one. I am not one to legitimately cry, claw and scream, it’s sorta comical and meant to be taken as such, but I was sincere in what the hell I would do now?!

I had already been through the ringer with doctors over the last ten years. I am not even going to write them all. It is so ludicrous they sound made up. All I can say is I still have all the paperwork. I will add, medical help is truly a matter of opinion. Only the people who have suffered for awhile or with a mystery, know this to be true. If you walked into an office with a cut and dry answer for a simple request, you won’t know what I mean.

This wonderful doctor not only has called to check on me as he settles in his new home with his family, but when I offer to send a check or pay for his phone consulting, he says every single time, “Donda, I care about you. I don’t want your money. I want things to be right with your health!”
Out of all these years. All these mistakes. All this greed. I am thankful I met this man.
He gave me back the belief in medical hope. I believe I was meant to move for many reasons, him being in the top two.

Anyway, as told in my blog ‘HYPE’, I knew that I had to keep an eye on my thyroid nodules, unfortunately the year was approaching quickly. I found this new doctor, not to be responsible and check my thyroid to be honest, only because I wanted to try to get a new prescription I had researched and read about. I was fine with the med I was on for my thyroid (Cytomel). However, I was still fatigued in the late afternoon. No matter how much I worked out, supplements I took, the fact I gave up red meat ages ago, took immune strengthening avenues, slept eight hours, was active, mentally and physically busy. There was my gut feeling again, thinking I’m too young to be this tired. I just wanted to try the new med I researched. Truthfully, I was and am, so drained I had ZERO desire to get anything from this man except get this med. I also knew at times I was too busy or bored with it to get my total water intake consistently. I figured the fatigue mistake was on my end. Glucose levels are more important than people realize. However, I had to keep my blood levels monitored with a thyroid disease. I had to have my prescription filled when the refills from my relocated doctor, ran out. (The relocated, wonderful doctor planned on continuing my treatment by phone once he set up a new practice.) Although, until then I had to be prepared. Plus, I don’t harass people. I didn’t want to hound the man, he was trying to set up his home and move on.

Sure enough, this new doctor started with questioning if I even had Hashimoto’s. I debated, “I have the test results, sir”. He was pissed. He was the doctor. Same old story. I will do my own testing mentality. I yawned, sat back, crossed my legs, let him ramble. It didn’t affect me for these reasons: 1) Been there done that. Repeatedly.
2) I knew Cytomel could not help me feel better, if I didn’t have a thyroid issue. 3) That is how I operate with strangers. If I know deep down I plan on never letting you see me again, if I have no passion left for the present conversation, I will let you feel like you are the alpha dog. Then I leave. Done. Good riddance. What do I care?

The verbal request appointment then turned into the exam. Bobby was with me at this one, he watched as the doctor started rubbing my neck, holding my throat asking me to swallow, telling me to close my eyes and hold my hands in the air to see if the shook (they didn’t), look to the left, look to the right, while he held on to my throat, massaged behind my ears. Then, he sat down and started explaining Thyroid Cancer. Detailed Cancers of the throat. As I listened, he focused on Bobby. Again, I think some of these doctors are either intimidated my husband is sitting there or he’s chauvinistic, who knows but I just kept thinking, “Hmm.. I’ll try a new family doctor to get this med from, I wanna try it, what’s that paper read on that desk?..hummidy hum…” The doctor then looked over at me and said, “The chances of you having cancer in the neck is three to five percent. I highly doubt this is malignant but I want to do a biopsy. Okay?” I was completely unaffected. “Uh..yes, doctor. Sure.” Then he asked me if I was afraid of cancer. I felt like Scooby-Doo. ROOO-HUH?

A person can’t ask me questions. Not if you don’t want the truth. Unless if I am trying to protect your feelings, I will lay it out, flat. “Well yes, I am. My parents died of cancer. Many people I love have.” His eyes lit up, literally.
“BOTH YOUR PARENTS? OF WHAT?”, he asked. I answered, “Well, my dad was from Lung. I understand how that happened of course, but my mom was told she was fine. Then a short time later told she was in fourth stage Uterine Cancer. They said a hysterectomy would take care of it, then after much more grief for her, she died.” He then felt the need to give me a speech. I thought, “Ugh why do I always have to answer truthfully?” He went into how rare this will be if I even have some sort of throat cancer. On and on.

My answer is still my answer.
I’m scarred.
The woman was robbed.

The time came three weeks later. It was never on the forefront of my mind. Absolutely no worries. I keep a calendar with deadlines of my writing, things I have to take care of, trips I want to plan, etc. One day, I looked at the book and noticed the biopsy was approaching.
Once the day arrived, I felt like a robot. Just far far overboard with the appointments, tests, blood, trauma. Jesus, enough. This is what my demeanor was and it’s my favorite thing about myself. In fact, a conversation I had with my daughter recently while getting her to realize her favorite things about herself, & she asked me in return. I thought about it on the biopsy day. My answer, I’m a realist. To the highest of the extreme.

I may be considered strong. I appreciate when people know that about me because I am. I attribute that all to the unique, pillar of strength woman who raised me, and probably getting married so young therefore being independent very early in life. I also just cannot be more realistic. Whether what I am telling a person is absolutely criminal of it taking place, I will say it with such calmness and conviction because ‘that’s just the way it is. It’s reality.’
The closest people in my life know it is extremely hard to shock me for that exact fact.

So, I had that trait going for me on this day. Had to do it. It’s reality.
A sweet nurse took me in to check my weight and blood pressure. I warned her how it is consistently low, she commented how very low it is and joked that it’s probably hard to get me angry. We laughed, she then asked if I was smoker. My laughter ended. “I quit seven years ago.”, I said to defend myself. She didn’t care about that part. “Uh-huh, how long did you smoke? How much?” (SHIT) “Ahhh..22 years..a pack a day..sometimes more..” She made the famous southern sound, “mmm-hmmm..”, as she wrote it down. I thought, “Oh for godssakes, stick the needle in my neck and wrap this up.” I greet the doctor, take my shirt and necklace off, take my earrings out, lie down, break my back with the hump I have to lie back on, you know the drill. As the doctor put the transducer on my neck he asked, “What hospital did you have your last biopsy at? What side did they focus on?”, I answered. He then grew irritated and growled, “That’s not the side to worry about..grr..” As I lay perfectly still and he tells me not to swallow and turn my neck to the left. I do just that. He begins taking hundreds of pictures of the right side of my neck. Only the two nurses could see what I could not on the screen. The nurse to my left, started rubbing my arm and babying me. Something I loved from my mom, but this was making me a little edgy. What is she seeing? As she is caressing my arm, she is looking down smiling gently. The other nurse is staring at the screen. The doctor then numbed me and did the biopsy. I did not feel a thing.
When finished, I sat up and said, “Gaaa, that killed my back.” The doctor said, “Your back hurts all the time?” I answered, “Well, yeah but it has all my life.” He then asked, “Has the pain grown worse or is it the same?”. I then knew. (sonofabitch,) “It’s worse.”. I just cleared my throat. Put my shirt and jewelry on, thinking another appointment done. Just give me the med I want so I can go away. He looked away from the microscope and my sample to say, “I want to see you next Wednesday to discuss the results.” I knew he wouldn’t tell me there but as usual, I gambled and spoke honest. “What do you see, sir? You do this all the time, right?” He held his hand out to shake mine and said, “I’m going to send it to the lab. I will see you next week.”

As the nurses walked me out, one said “GOOD LUCK!”, and walked off. A common saying yes, but not one you want to hear from the person who just watched the screen of what is inside your neck. The other one, who was so compassionate with me, walked with me. I said, “Thank you for your kindness during the procedure. When will the results be in?”. She said, “Well, what’s your number? They will be in Friday.” I thought, “Good. If this is anything, the sweet woman will call. No call. No worries. No big deal.”
I didn’t expect one either.

As I wrote, NEVER fails. This is how these situations happen. When you are your happiest, when things are going the best, and when things could not be more smooth. You will get THE call.

Sure enough, I had the day off. I was drinking coffee, making my daughter breakfast, laughing with music playing. The phone rings. Caller ID reads the name of my city. I figure it’s a writing job. It’s common for me to either get them on my work phone or my cell. I answered, and it’s the pissed off doctor wondering why my appointment is not set up. I protested, “Sir, I made the appointment when I checked out. I don’t know what to say.” He responded, “Well, it’s cancer. I need to see you immediately.”
I did not believe what I was hearing. “It is?” Then it hit me. D A M N I T. My daughter is standing here. I just tried to listen the best I could to what he was saying, without speaking. He mentioned ‘surgery and following the procedure afterwards’ and ‘I knew at the biopsy. I don’t make appointments for benign results.’ (He had to get that part in..) As I didn’t flinch to stay calm for my girl. I can’t explain it, I was shocked and yet not at all. I was lifted into another dimension but I was still intently listening. The hard part was he is not American so he could have been telling me to ‘draw up a will, you have four weeks to live’, for all I knew. I didn’t have the faintest idea what he said.
I hung up. I stuck to the first thing my mom taught me about being a mother. Never lie to your children. They won’t trust you. My girl asked, “Is it, mama?” Even though she is 19. It ended up being the one of the hardest days of my life. Talking, explaining and helping her through that news. Convincing her to stay positive as I could tell she needed to cry, so I told her it wasn’t healthy to hold it in..as she let the tears out then soon after became strong for me. Telling my husband ended up being such a worry because I still don’t know if he can get through this he’s taking it so hard.

See, when you have watched every single person you love be told they have cancer to watch them deteriorate and die painfully and slowly. As Bobby experienced just as I have, Even though you know ones who suffered and lived, the bad ones are forever etched in your brain to what happens. Just this surgery. Just this procedure. Always seems to turn into more found soon after. Bobby and I always swore to each other we would never fight cancer with western medicine. We would never take those doctors words for it that all will be well after this one surgery (when the air hits the cancer.)

I don’t like to refer to people who have survived cancer as ‘cancer survivors’ because not only do they deserve a more fitting title to have taken that on and not died. Superheroes, something better. I just don’t like to insinuate the ones who died were not the fighters they were to be able to survive it. They were. They just had poisoning put in their bodies to fight it. The air hit it. They weren’t young enough. They weren’t healthy enough. They weren’t positive enough. They didn’t have the best of doctors. Their insurance wasn’t good enough. They were overly medicated to fight anymore. It was just their time. Who knows, but every single person who takes on cancer is a survivor in my eyes. Whether they live or not.

“Cancer is not a battle that we win or lose. It is not our fault or a sign of weakness. We are not responsible for our cancer outcomes. The crapshoot of cancer and recurrence can NOT be controlled. Celebrate yourself for each time you, despite all the trauma of cancer, treatment, and the mind-fuck of “survivorship”, choose to love, live, lust, laugh… We are not a success story based on our cancer progression or not. We succeed when we are courageous enough to keep walking forward even with missing parts, severe pain, addled brains, and broken hearts.” ~Dr. Erica D. Bernstein

Interesting. Wonder if she is a doctor for the money or the person?

Anyway, where I’m at now, It’s complicated. For me. All of us. Bobby just keeps saying he wants to grow old with me. He is in a panic. I have put myself in his shoes, I understand. Every single person who is close to me is telling me gently, I should get a second opinion and get the cancer out. God bless them. That’s a tough thing to address. I have been brought to tears, which is hard to do with me, with things that have been said to me. Just beautiful, caring, concerned, loving thoughts, gestures and advice. Things people have always wanted to say to me. I am blessed to have the people that care. My girl is being nothing but strong and positive. My Bobby, a complete wreck but setting it up to get me to the best place. Sloan-Kettering Cancer Center.
Me? After researching the best cancer center, I found out holistic ways to cure cancer. There are many. The average person just doesn’t know about them because Holistic Medicine does not make billions of dollars a year. I really don’t want my neck cut open. Hence, why I chose Sloan-Kettering if I am going to do this, I want a surgeon who does these seven days a week. Not one who does this maybe twice a year, (again, three to five percent get this. I wasn’t supposed to have a malignant tumor in my neck. Remember?).

I am taking a huge risk to ignore it. I’m rolling the dice either way I choose in my eyes. I am taking a risk for it to grow and to close off my breathing in my windpipe in my sleep, without knowing it one night and my family finding me dead if I don’t make the attempt to get this cancer out. Then again, a large percentage of people are found to have cancer in their necks during autopsy, yet they don’t die of it. That’s how common it becomes with age. I have read stories where people chose to ignore it. I have read stories where it takes years to recover. I read where they found it spread later. Along with stories where it was a success. What does a person choose?

All I know is I have to protect my family. I calmed Bobby down with telling him we are just going to take a getaway to NYC for dinner, walk in Central Park, and a discussion with Sloan-Kettering for a second opinion. Drew is all for the second opinion. This sweet, loving girl who has had only me consistently, trusts the decision I will make. Those who love me, and the ones I know who work in medicine tell me a second opinion is a must and cancer in the throat is very slow growing. My last beloved Doctor does not believe this is happening to me.

All I know for sure is hearing these words wake you up to what really matters like no other situation.
I know I hope to be at Drew’s college graduation, wedding, birth of her child.
I know the little things a person worries about truly mean nothing. I know what has hurt you in the past becomes non-existent.
I know I hope to finish my book I am writing. I hope to be a grandparent with Bobby. I really want a Yorkie-Poo, I can not wait for Alison Krauss’ new album, and Lee Ann Womack’s. I know I’m looking forward to the good parts of the book I am reading, Proof of Heaven. I’m intrigued. A book I bought long before being told this, but just started reading. I know I have far more to see and do. I know I am a fighter but a person can’t choose whether the cancer will kill you or not. No matter how hard of a fighter you are, I know it is a travesty money still ranks over health care but it always will. I know if I never heard those words said to me I would never in a million years tell the person who has heard the words, what to choose.
I know I am young.

From there and in NYC, I will make my decision. I will follow the number one rule my mom taught me from the time I could walk, follow your gut.

**This video is Bobby’s 28 year old love song to me.BB25

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Bright Side

Here is my reminder and last of 2012, to stay positive.

Even though I will always check in on the board, it is likely I won’t be on the blog as often in 2013.
This blog did the purpose. It helped some while letting others know they are not alone.

I am happy to know you all enjoyed the music I shared, and the meanings to them were understood.

And, to whom thanked me so lovingly, for the knowledge that music therapy and meditation will repair your spirit, I only wish to pay it forward and am lucky to have developed a friendship with you as well. No, I don’t want to finish writing the Lyme book but you will see the other one. 🙂

For the ones who followed my reported protocol to find improved health, I am humbled in thought. And, can not be more pleased to know it worked for you as well. Reward yourself!

To all who have followed this blog, the ones who write me letters to this day, and to my many friends on the Lyme group I hope you all have a holiday with ones who love you -in sickness or health- and ones you love back. That you tell yourself every morning the warrior you are and what you have accomplished with taking this on, while not living as a victim. Everyone in this world have problems but none compare to the issues of fighting yours, or a loved ones health. What I admire most in every single one of us is we live happily with what we have left in this aftermath, value what we do know, waste no time, and fight strong to the end for answers.

Do not allow the pressure. As the ole adage says: Courage does not always roar. More often it is the quiet voice that whispers at the end of the day, ‘I will try again tomorrow.’

To know that others have walked down a similar road may not make the difficulties of the journey easier, but should give us hope.
Forever hold on to your hope. It WILL get you there.

MERRY CHRISTMAS AND CONTINUED WORK AT A PEACEFUL 2013.~
Warmest Regards.

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Peace Within~

My parents, who worked and socialized in show business in their lifetime, each believed I belonged in it.

My Mom, thought I should have went to NYC to audition for Saturday Night Live, she swore I was a natural for it.. she didn’t want me to pursue the lonely life as a musician.

My Dad, wholeheartedly wanted me to head to Nashville and knock ‘em dead.

My dream, ever since I was a baby, was to be a singer then move on as a Music Producer-my ultimate goal.

And yet, here I am known as a “Lyme Disease Warrior for the Lymies”.. a description a fellow writer so affectionately described me as in her article.

I am moved for the mention. Although let’s face it, Life is pain.
My ‘claim to fame’ ended up being my suffering.

Here’s the good news, for my inner soul: I still sing. Very proudly in fact. In my opinion, Karaoke isn’t performing. To me, after singing for a few bands, Karaoke’s a bar distraction for fun.. but I still sing.  Singing recently for a friends’ band, due to my love for music and power of the voice, I still found it enjoyable, ironically discovering after the event that part of my life was now over. At this same event, I was hired to cover the day for a piece in the local entertainment flyer. My job, interviews and notes had now become more important to me.

However, as I will for the rest of my life, this past year I continued my quest in the love of music, teaching myself how to play the acoustic guitar more prominently. A lesson my self taught musician Father of many instruments, always wanted to give me while I used the excuse that I knew a few chords on the guitar, my voice was my instrument. (it is, you know. & I was always fluent on harmonica.) Like most kids, I thought I had plenty of time to learn.

Now, I can play the acoustic guitar. Properly.

Along with writing a song on occasion and writing daily in my job, I continue to produce. Yes, as an amateur, but I produce creativity, musically. As I make sure it’s distributed to share. Now, I am at the level he and I wanted. Just not in Nashville or on a record label for the masses.

And, since humor is so very paramount to who I am, every single day of my life, I do impersonations and live skits for all who is around me. Even myself. I live Saturday Night Live, instead of work on it.
The cruelty of a MS misdiagnosis and the Lyme/Hashimoto’s battle I faced with all that I learned, brought my true self back out. Along with a writing job I love and meeting new people every day, I am who my parents aspired me to be.

Reach within yourself of what you always wanted to work at. The true attributes of yourself you carried as a child. Your plans with your mentors. The more you suffer with what you have to do to rid yourself of your illness, you’ll come back too.

The suffering, searching and herxing is an absolute must.
No matter how long it takes, Don’t ever give up.

Believe me, I was extremely ill. At this time over two years ago, I was told to shop for a wheelchair, by a money hungry, unsure moron neuro – mind you. Nevertheless, I was very ill.
Life may be pain – but you could highly likely wake up one day thankful this all happened.
Even when new problems arise, you’ll never forget what you endured and survived.

It’s worth it when the impairment is over and I promise you, you’ll look at every single little and big thing – anew.

*As they always do.. The song has meaning; it was the last movie I watched with my mom. In the hospital, unable to find anything else to watch while I put lotion on her feet. As that original, hilarious woman lay sick, she asked, “ugh..why do you like this garbage?” (she was ultra choosy when it came to country..) — The song which is from URBAN COWBOY soundtrack, was also one I sang with my Dad’s band, in my early 20’s.*

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Cocktail Crawl~

I have other -healthier- ways to celebrate.

So do you.
You can see, you can read, you want to fight.
Every thing counts. 🙂

I’ll be unavaliable for awhile. I will return with some laughs either on the board or on the digs…
Till then…

~HAVE A GREEN SHAKE ON ME:

INGREDIENTS~
1 bunch cilantro
1 cucumber (no need to peel), cut into pieces
1 lime, juiced
½ finger length ginger (no need to peel)
5 little pieces pineapple

INSTRUCTIONS~
In a blender, combine cilantro, cucumber, lime juice (and a little purified water if needed to help blend)
Blend in ginger and pineapple until smooth
Pour into a big glass
Sip slowly like wine, to help with digestion

Posted in Lyme Disease Discovery | Tagged

Hail the Herx~

For those who live with two diagnoses. Worth checking out, especially if the MS shots make you worse.

http://owndoc.com/lyme/multiple-sclerosis-is-lyme-disease-anatomy-of-a-cover-up/

How Identical Lesions Compare:

http://lookingatlyme.blogspot.com/2010/09/brain-lesions-white-matter.html

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. 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. Mine being Hashimoto’s. BUT I am now in remission from the Lyme. Treated for the Hashimoto’s and 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 http://www.medicaldaily.com/lyme-disease-contagious-clues-hint-it-may-be-sexually-transmitted-disease-267964

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To be continued..


I wanted to express my gratitude to all of you on the support group to which I post this blog. Hopefully, I have been warm and open enough, (I’m sure I have, I can be pretty mushy with who I like or appreciate.) Along with expressing the importance of our group. It has been reassuring to have others to lean on who have dealt the same crappy hand of cards I have. *Well, pretty much the same deck.. since we all know, each Lyme(ie) have similarities in some ways but we are each unique in what we endure.

I am sure you could tell by my “LAST” blog — I am fairly drained with it all. I even did something I actually always disliked; I posted a picture of the dreaded tiny, deer tick that changed all of our lives. Even though the sonofabitch looks like a monster in the picture, and yet we know it’s not. It’s a part of the protocol, so I threw it on here.  Don’t you love to be reminded over and over again the deer tick is very very very tiny, approximately the size of a fleck of black pepper? 

*Look at it like this, it’s not so shocking we missed the little vampire.

I as well spruced up the blog with a splash of color.  And, will continue to add music, of course. You all know I can’t help myself in that department. I’m happy to know the songs are being enjoyed. 😉   I’m sincere when I always make the comment that it is medicine.

When I signed on to write, I am aware I was at times either too quick and short on the support group threads or not detailed enough on the blog. My research, fatigue and boredom from some of my freelance jobs, got the best of me. However, I plan to change that.. along with mixing it up a little. You all know how draining the battle alone really can be. You also know the medical community would rather treat us for any ailment, other than Lyme. Why? We may never know. I’m sure there is some crooked, greedy or lack of intellect answer to it all. Nevertheless, no one knows this disease or our body, as we do.

I just accept it. There’s no other way. Other than how I react to it all.

Lastly, I am enjoying my new job writing for much more interesting gigs and since I have a long weekend coming up- & up late tonight, listening to music, I wanted to give a heads up to all who follow this I will be posting some new type of stories. (when time permits..) It will be an array of non-fiction stories from mine and other loved ones, lives. Maybe getting our scarred minds off all we have been through will be a refreshing, funny, or even a new kind of disturbing distraction from the battle and day to day responsibilities.

I will continue to look forward to hearing your stories as well!

Whether we meet or not, we all have a bond.  Healed or not, we are as one in our ‘club’.. and it absolutely must be remembered-each one of us are stronger people for it.~

Posted in Lyme Disease Discovery

The Last..

Did you ever feel like you have lived enough for ten people? Well, I have.
I do.

Have you ever been remorseful of who you gave your energy, time, & youth to? I have.
I am.

Loss of health affects it all.

Bigger fish to fry.
Focus on the battle.

If you think about it, look at your health struggles as a test of some sort. It can anger you. Really pisses you off. I get it. It can even be meaningless if you try and get help…

I hate going to the doctor and yet, six years ago-I went repeatedly, to my newly licensed physician in West Virginia, to not be taken seriously. When in actuality, my case was simply over her head.

Then my anxious, money hungry neuro who fell prey to the benefits of pushing copaxone, with the effort of trying to cover it up with unbefitting humor, recognized autoimmunity in me to jump on the Multiple Sclerosis bandwagon, due to my having brain lesions. *Even though Lyme Disease can cause brain lesions.*

He even wrote in my file: ‘Possible MS.’

He wasn’t waiting on that check!
Stick with reality. – Makes life easier.

Now, I have learned-all along, the autoimmunity was from Hashimoto’s and the lesions from Lyme attacking the fattiest part of my body. Hence, the brain. The Lyme & Hashimoto’s result/battle to the prelude of a MS misdiagnosis was yet another test.

AND- to think, this all started with ‘looking into possible brain cancer.’

Greed & Ignorance is alive and well, folks.

I fought for six years. No matter what I went through or how I felt, I never gave up.
I have answers, Majority of my symptoms were from Lyme.

One constant storm.
What’s the alternative?

BE WELL.

To the Lyme Disease Support Group: I will always push for your recovery.~ “Garbage in. Garbage out.”

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Every purchase will have ten dollars donated to the research towards Lyme Disease.

Lyme Disease Awareness Bracelet.

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Hype

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

Posted in Lyme Disease Discovery

Answer?


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 …

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The Test~


~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.)

3. Bargaining.

4. Depression.

5. Acceptance.

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.

Namaste~

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Perseverance~


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:
Mood improvement
Less muscle spasms and pain
High sex drive
Less heat intolerance
Fatigue problems resolved
Healing of nerve damage
Repair in brain lesions
Weight loss
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.~

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