Vlog Day 13 of Stem Cell Transplant Recovery

Vlog Day 13

Canabliss - My Introduction to CBD and Its Effect on Pain

I have not mentioned this before. Sometimes its takes time to reflect and realize what needs to be shared.  And Lordy knows I share everything. Even a little side boob. There was one thing that helped me survive my flares aside from the machinery and pain devices in my body, the dozens of medications we have attempted or I am on, that alleviated the excruciating existence that has been the past six years. Cannabis. It sounds so much more civilized than Marijuana. I never would have believed it until my son did some research - now, I don't exactly know what kind of research - and showed me a video. At that moment I was curled in a fetal position asking God to pass a cup of sugar. This was last Christmas and that particular flare had been ongoing for about six months. 

For those who don't know, I have Arachnoiditis and CRPS of the spine, the two most painful conditions on the McGill Pain Scale above childbirth and Phantom Limb. They can last weeks or months with labor-like contractions in my spine that last 3-4 minutes each- with a peak that literally feels like a baby's head is crowning - every 15-20 minutes around the clock. This last one lasted nine months. Just enough time to have the kid! Oh, on top of that, when they peaked my thighs felt like someone was shoveling the muscles off my femurs with butcher knives. Damn that does not sound like fun. 

In any case, name the drug I met the thug. I tried every medication a celebrity has ever loved. Nothing would take that pain away. Nothing. 

Until I met Cannabis. 

Now, the one thing many folks don't understand is it's not like us pain patients are laying here toking all day, and the kind of Cannabis we use is not the fun and happy kind or I'm sure we'd be a lot happier and having more fun. One of the forms I take when needed is prescribed by a doctor and is Medical Grade oil No.5. Sounds like a perfume, right? Number 5 means it is half THC and half CBD. CBD is the hemp oil that is burned out of the leaf that contains a majority of the healing aspects of the plant. CBD is not psychoactive. This means that it does not change the state of mind of the person who uses it. However, it does appear to produce significant changes in the body that result in medical benefits. 

I order my capsules from a company called Statewide Collective who I was referred to by my doctor, Dr. Franklin at Greenbridge Medical on Wilshire in Santa Monica. Statewide has you sign a couple forms, send in a copy of your prescription (all scanned in and sent via my phone) and anytime you need an order it is on your doorstep within 24 hours. 

For anyone who has ever felt a stigma about Marijuana, please know I did too, and I even grew up in Hawaii with a friend's grandmother (Tutu) growing it (Pakalolo) in her front yard. I had seen news segments on its use for medical conditions, but when your pain is shredding your body from the inside out the last thing you think is going to help is a puff off the happy stick, smoking trees or mowing the grass. 

However, when you have tried every possible medication known to one of the most accomplished pain management doctors in the world, it's kind of hard to just say, "No". It was the last resort for me. The nude beach of medicines when you throw up your arms and just say f%*# it. 

The sad thing is, I had used it before, but it made me feel paranoid - and guilty for having tried it. Plus, I wasn't in pain so how would I have known it helped for pain? Although it did make me pretty numb. 

Back to the video. A man stood mid-sentence facing his friend's camera holding a vaporizer in his hand. His hand was shaking terribly. I assumed Parkinson's. But he was so young? Whatever the condition, his youthful complexion belied any aging state, a scruffed beard patched just enough to suggest otherwise. Several young men scattered a room befitting a college student - Then came the sobering part. An honest confession of a life too similar to my own. One with a semi-colon, paused for an extension of something else that it could someday become. He explained the doctors, prescriptions, and battles lost. Then he lifted the vaporizer with Cannabis oil to his lips, and with one inhale, the tremor in his hand stopped. His hand was suddenly doing what hands are meant to do.  He exhaled and held his hand to the camera like an airplane without turbulence. An applause from his audience - and a silent one of my own. 

It was then that something stuck. Neurologically this had to make sense. It calmed his nervous system. Perhaps it could calm my own. I had heard of people struggling for years then finding Salvia-ation. I had seen it in the news, parents begging insurance companies to cover the one thing that saved their baby's life, so why was this the video that struck a chord? It was from my son. He is the one who asked, who pleaded for me to watch, really watch, and to take the leap, and so I did. 

Due to the neurological and inflammatory autoimmune conditions, Dr. Franklin suggested the Number 5 capsules. 

The moment of truth came as soon as I opened the package. Little red and white capsules like Nurse Jackie. It took about 45 minutes to an hour until the peaks of the spinal contractions began to quell. Suddenly the bracing of my hands into the bedsheets were left hanging, waiting for that moment that never came. I was managed just enough so that I could endure each contraction.  For anything at all to help manage this level of pain (documented as 1000 on a scale of 1-10) was unthinkable. Anything similar would need to be a hospitalization with hoards of the most potent IV steroids and opioid medications allowed and even then my doctor always had to push the envelope for me to receive even the slightest bit of relief. In all of his twenty years of specializing in CRPS, he had never seen a case like mine - I'm not bragging or edging for the Pain Patient of the Year Award, but simply to clarify the enormity of the impact Cannabis usage has made on my quality of life. 

Outside of an active flare, the capsules masterfully cover what other medications have tried and failed horribly. 

Since my stem cell transplant I have changed my capsules to a Number 4, which has less THC and more CBD as the neurological flaring has subsided. I am now dealing with more of the bone pain from the mechanical issues, than the neurological tantrums. It's like somebody finally took them, sat them in a corner and threatened to take their candy away. The Number 4 also makes me less sleepy during the day. 

According to CBD Oil Review, here are some documented facts about CBD:

10 CBD Facts You Need To Know

#1: Key Ingredient

Cannabidiol is a key ingredient in cannabis, one of more than 60 compounds unique to the plant and grouped under the umbrella term “cannabinoids.” Cannabidiol, otherwise known as CBD, and THC are usually the most common cannabinoids in the plant and are therefore the most widely studied.

#2: Won’t Get You High

CBD does not get you high like THC does. THC causes euphoria by binding to special CB1 and CB2 nerve receptors in the brain. CBD does not bind to these receptors, so cannabidiol does not get you stoned.

#3: CBD From Hemp is Legal

CBD can be made from medical marijuana plants or industrial hemp plants. Marijuana is illegal under federal law but legal in some states. Industrial hemp when grown in other countries can be imported legally into the United States, making it easier for consumers to get CBD treatment without breaking the law.

#4: Cannabinoid Levels Vary

CBD and THC levels, known as cannabinoids, vary between plants. Marijuana plants grown for recreational use tend to be high in THC and varying amounts of CBD. Industrial hemp plants are very low in THC while medical marijuana plants are typically high in CBD.

#5: No Prescription Needed

It is legal to order CBD made from industrial hemp plants online for use in any state without a prescription. Individuals ordering CBD products made from medical marijuana plants must live in a state where medical marijuana is legal and have a prescription.

#6: Has Medical Value

Scientific studies show CBD provides therapeutic medicinal benefits. According to a 2013 review published in the British Journal of Clinical Pharmacology, soothes nausea and vomiting, acts as an anti-oxidant to reduce free radicals that cause neurodegenerative disorders, and works as an anti-inflammatory to reduce swelling. CBD also stimulates appetite and relieves pain.

#7: Benefits the Mind

CBD also combats psychological issues, including working as an antipsychotic to combat psychosis. Additionally, CBD works to reduce chronic anxiety and depression disorders. These benefits of CBD are also helpful for patients struggling with temporary anxiety and depression resulting from a more serious medical condition.

#8: Combats Cancer Spread

CBD products may reduce the spread of some types of cancer cells. The National Cancer Institute reviews several studies that show cannabidiol may have a protective effect against cancer. This review includes research investigating the benefits of CBD treatment for a variety of cancers, including breast, colorectal, and lung cancers.

#9: Reduce THC Fallout

CBD counteracts the negative effects of THC. According to research published in the British Journal of Psychiatry, CBD seems to prevent THC-induced memory impairment. CBD may also ease paranoia and other negative side effects commonly associated with THC.

#10: Helping Children with Seizures

The U.S. Food and Drug Administration (FDA) has granted University of California at San Francisco researchers permission to study the effects of the purified cannabidiol drug on children with uncontrolled seizures. Study participants are all between the ages of 1 and 18 years, and all suffer symptoms resistant to conventional treatments. Many participants have Dravet syndrome, a condition that begins in early childhood and causes frequent, disabling seizures on a daily basis. The FDA and Drug Enforcement Agency promise to monitor the research closely. Pending FDA approval, more institutions will take up the study.

I hope this helps to clarify not only what CBD is, but the impact it can have on a life. 

So the next time your kid insists you watch a YouTube video about something that just might change your mind, it might not be such a bad idea but to give him a moment of your time. 

Loop This - Days 5-7 - Stem Cell Recovery

  Day 5 

The honeymoon seemed to come to a close this morning. I was warned, so no surprise, but my spinal pain returned in the morning. Can't blame it for wanting to see what the fuss is all about. Evidently the jackhammers were a bit too loud for a Sunday morning. Thankfully, it was still not its fireball self, but nowadays I'm viewing every shift in my body through a microscope; Something it would probably be healthier to refrain from, but as part of a trial, it's my duty to document and notate each symptom for my doctor's logs. If ignorance is bliss, I guess I am to be one angry futher mucker. 

The incision sites and encircling acreage are still quieting down, but dang I am not opposed to raising a barbed wire fence around my trunk. Poor Don, every time he merely lays his arm on my side as we watch TV I hit the ceiling, and him. I'm not the only one black and blue around here anymore. It's incredible how sensitive the recovering areas are. It makes me wonder how anyone could ever possibly - with a sound mind - opt to and pay for liposuction, on purpose! And then I thought about Cindy Crawford's waistline at the age of Goddess and it all became clear again. My whole life I've wondered what my tummy, booty and thighs would look like with liposuction.  Until I moved into my wheelchair and realized I'm never going to have to worry about that again! My tummy is pretty much behind a curtain, no one can see my booty, and my thighs are horizontal -I've hit the female insecurity jackpot! No more thongs! Spanx are just a verb! I did try to look at the bright side, until  I reflected on the whole not being able to walk thing. 

After that I got to work on my sloth imitation. A sloth with a migraine. Let's just I was rudely reminded this is not a sprint but a marathon. There's a funny thing about the 6-9 month recovery period after a Stem Cell Transplant, the days you feel you are going backwards, are the days the transplant is moving forward. The nature of the process is deconstruction to reconstruction. Specific parts of your body are literally under construction, the scar tissue, structures are being broken down and then built all over again. The new Cells are repairing and eliminating others. So much is going on inside that the body needs every one of its resources to accomplish what is hopefully going to be a miraculous task. 

A remedy I am practicing is distraction. The Real Housewives of New York always makes a day look easy. Compared to Ramona and Bethhenny's ongoing row, the battle inside of me looks like a day at the spa. I'd like to see Ramona shed some cells for mankind sometime. You know, a good old fashioned dermabrasion always builds character. 

Day 6 

Woke up and my whole world turned around! Out of bed by 10:00am (unheard of!) and did some laundry. Very little spinal pain but still hovering as to warn me to behave. I even drove and partied with Blue Belle under rainbow noodles in a drive-through car wash. Then 4:00pm and my damn glass slipper fell off and had to drive my pumpkin home. 

The one common denominator of my days is unpredictability. As long as I can chalk that up to being exciting, this is all going to work out just fine.  

Day 7 

Ok. Someone has placed a vice on my forehead with an implanted chip, blue tooth of course, and is lurking outside my home logged onto our wifi and controlling it via their iPhone 7 Plus; The Plus, because it is larger and has a greater operating capacity, especially since we just upgraded to unlimited data. I have been body-snatched by a 'temporal' pschitzophrenic. One hour I'm eating a Bon Bon, the next my head is spinning while plastering the walls with chocolate spackle. 

The good news is it is only six days out and I can unequivocally say that my post op pain is about 84% healed! Specific times call for specific measures. Each incision has almost completely healed the bruising gone! A key to this was the doctor's order to begin and continue Bromelain and Arnica prior to the transplant, both of which I ordered through Amazon.  The only bruising left is immediately surrounding the incision sites. 

For the headaches I take powdered packets of Cambria, a potent Diflucan steroidal type of medication. Be sure to put this in only a couple ounces of water, not milk or juice or anything else. It has a minty flavor that you is quite unfavorable, so at first I tried milk instead. It tasted so much better, but it was only half as effective. Then I read the package. Doi. I'm really trying to drink as much water as possible as well. I've found watching TV and bright lights can bring on the beast so have resorted to wearing my prescription sunglasses inside. Not only is it effective, I look damn cool doing so. That and the Bon Bond and I am one hot Mama!

Speaking of hot, whether it's good for me or not, nice warm/hot showers help with muscle stiffness. The areas of muscle along my spine where the stem cell paste was injected are still squawking. Lidoderm patches work beautifully as well as my prescribed not-for-sissies anesthetic Compound cream. This has a combination of topical opioids so always consider this when combining this with patches and oral medications. Everything I use or do is under careful the moderation of my pain management doctor. 

I have laid lower than a snake's belly today (as my grandpa used to say) with the hopes of making it out tonight for a family 4th of July celebration at the Hollywood Forever Cemetery. If I don't make it back at least I'll have appropriate accommodations!

So, the end to another interesting day in the rebuilding of me. As loud as it may seem, it's not that terrible an almost-place to be. 

Day 3 of Stem Cell Transplant - I'm In

July 1, 2017

I woke up to the post op pain this morning but something seemed to be lifting. On Day Two, merely breathing on my wounds, being the incision as well as the four inch circumference around them - otherwise known as my entire torso- would cause a breath so sharp it stung. Ironically, the protocol is to wear a pressure garment for the first few days to a week. You'd think this would be torture, but once it's on and secured it's not so bad, dare I say it might even be comfortable as it seems to hold the injured tissue and muscles in place. They originally placed me in a type girdle looking garment, like a 1920's lady of the night. It is comprised of a thigh length Spanx reaching up to my ribs with shoulder straps and a convenient hole for ladies to do what they do. Although some of those do's are not doable do's at all. The mere thought of my husband's suggestive stare sends me to a catatonic state. Showering is allowed, but bathing or submerging the body is not until the incisions are fully healed - approximately two weeks. Neither are mountain climbing, Ninja competitions or Hot Dog Eating contests. Or anti-inflammatory medications. 

Undressing to shower meant removing this garment of the night. Removing meant unleashing the wrath of restrained muscles and skin tucked in so tightly I swore I'd snap in two. The key was to treat each section I exposed like a baby entering a bath. Slowly, carefully, let it get used to the temperature surrounding its skin. Once the garment is off, I felt as though several sections of my thorax were cordoned off from the others. Each wound (I had twelve) is from a literal liposuction procedure in order to procure the cells. A wand inserts then probes the circumference of a small fruit, shoving muscles around and sucking fat from your planes. I thought about the post op instructions suggesting a slight bout of pain after surgery that Tylenol should quell if you opt not to take the prescribed medicine. I wanted to corner the author of this text and gather his skin together, all of it, even his secret folds, and tie it up in a rubber band. That's all. Just tie him up. Them offer him an aspirin. For his heart attack. Because the pain shouldn't be too bad. 

After the shower I switched to my Velcro back support, a wide elastic band that covers from Rib to hip.  The tighter I was able to pull it (again slowly and carefully) the easier it was to endure the pain. The anomaly I am still trying to grasp is the void I sense around my lower spine. I'm three days out and have yet to curl into my daily ball of retreat from the burning of bone. The pain I woke with every day that kept me from rising til noon. I have not once bolussed (pushed additional medication through) my intrathecal catheter of my pain pump, or operate my spinal stimulator in any way. The only pain I have experienced has been operative and is one I embrace as temporary, logical and of purpose. This absence brings tears to my eyes from a place so deep they sting. 

My energy is returning, but find myself recovering from a short bout of sadness from last night. A momentary depression that made me analyze my self. Why was I sad? Similar to the baby blues when something so monumental occurs that it's the following silence that's blinding. My husband is here, my children all loving me and all the support in the world. But yet I felt somewhat alone. It's just me inside, but if anyone understands, I do. And this is what brings me calm. The knowing that although no one around me may comprehend how I feel to be shattered then born, that is not what I need to become something new. All I truly need to know is they believe this is something I can do.  

We packed up our hotel rooms and prepared for the long drive home. 

I stopped midstream when I transferred myself into the passenger seat. Something caught my attention. There was an odd fluidity of motion in my legs. My left leg specifically, the one that had given up. With my body in and feet still touching the pavement, I then transition to Stage Two - a twist to the right and a scoop of my arms under my knees to settle them under the glove compartment before my seat. A deadened weight usually follows with the shift, my toes kissing the doorframe as they enter. This time it was as though they cut in line, an antsy child not wanting to wait outside in the heat sneaking into the car hoping no one would notice. My transfer of calculated logistics suddenly became an afterthought, because it could. I looked around as though I'd forgotten something. My keys. Did my iPhone slip behind the cushion of my wheelchair? What did I miss? Then I noticed the puzzle piece in place. One I lost six years before. A bridge had opened from my brain, a message connecting in silence as though it had sat in anticipation for the road block to clear. My legs that always relied on arms for passage had slung in momentum without pause. An event so small yet it stopped my world in place. The tussling of kids and dogs, my husband's breath, coated the air around me as I considered what just occurred. Everyone in? I nodded, looked to my husband and he knew something had taken my breath. I am in my love. I am in.  

My Pink Army - Stem Cell Transplant Accomplished

~ I awoke the day after without spinal pain. The kind of pain that made me question God. The doctor calls this post-operative period the Honeymoon faze - when hundreds of millions of warriors have re-entered my body and stunned it into submission - launching atomic bombs obliterating inflammation, freeing my system from the bonds of torture it's held over me for six years. The years a life has lost.  For the first time since October 28, 2011, I can feel the girl I used to be rise in my belly, aching to feel the warmth from the light that I can see. We lean into each other - a trusting game that this time hope just might be real. ~

My Stem Cell Transplant yesterday went beautifully! It's quite a roller coaster post-op.  Upon returning to our hotel minimal movement was a feat due to the post-op pain. The strangest thing was something the nurse had warned me about. Evidently the ambush of Stem Cells creates an onset of Martha Stewartitis - A manic disposition of OCD. Before the surgery my doctor called in a prescription to help with this, not so sure how effective it was.  If one thing was out of place my chest would coil. Girls, you know that feeling when PMS makes you perform Spring cleaning in the Fall? Or for men, it's that moment you look at your garage and fantasize what it resembled when you first moved in? That angst for order. My body was not in its right mind. This mental ping pong continued until 3am. I'm chalking it up to my cells, not my mind. Right?

Pain levels rose through the night as the local anesthetic wore off. Then there was the delightful puddlings of ooze that pooled from open wounds - a lovely pink strawberry cream fluid mellifluously trailing from USB ports on my belly, inner and outer thighs, buttocks, flanks, and sides. You see, each extraction causes trauma to the body as the doctor literally sweeps throughout the circumference under the skin like a Hoover sucking and tearing the underlying tissues to obtain the cells within the fat. Stitching these wounds closed would have caused additional inflammation that could confuse the newly infused Stem Cells as to their proper work stations. Stem Cells are programmed to attack inflammation. That's also why my doctor would be resistant to performing a transplant if I had had a fresh injury. 

Waking up today was a good sign, yet in some ways a touch regrettable. Just not fun.  You might want to plan a three day sleepathon. Here is the good news. My usual spinal pain is virtually non-existent. A traditional waking process is a three hanky morning until medication A, B and C, a bolus of my intrathecal catheter, increase of intensity to my lumbar and cervical leads to my spinal stimulator and a good dose of denial. 

These first few days of post-op endurance, the body receives an Astro blast of inflammation reduction. I am truly in the Honeymoon phase - no question about it. Now, I must plead a headache to myself so I do not in any way overdo it here. The cells have not had the time to reconstruct the body and being overactive because I am numbed out could set me back. That my friend is not an option. 

---

My hubby, two of our girls and my service dog entered the doctor's front office, family style.  We were welcomed like long lost friends. The doctor had instructed months ago that I absolutely had to gain enough weight so he could pinch a solid inch of fat on my body in order to be able to perform the most effective Stem Cell extraction possible.  Having endured over 20 surgeries, procedures and counting, the anesthesias, stress and medications had caused a rather mind boggling weight loss. If I didn't gain enough fatty weight (you need fat not muscle) I was not going to be cleared for surgery. 

So commenced the ice creamathons, burger binges, and the See Food diet. The goal was to eat fatty foods. So I did. And I gained weight. And I was proud. Until I got there and his brows furled upon gazing at my tummy and said the belly just may not be enough. He pinched and prodded here and there. We may need to search elsewhere. Elsewhere? What does that mean, my husband? My dog? Evidently elsewhere meant everywhere else which led to the lovely condition I have found myself in now. 

The protocol yesterday went like this:

Enter office. 

Kisses on Blue. 

Sign forms for death. 

Tell them you're paralyzed so you won't hear your weight. 

Are you pregnant. He'll no. 

Black crepe robe with matching porn thong. 

Doctor speaks. 

You nod. 

Enter Room A you then hope is not the OR. 

Anesthesiologist. 

Veins. 

Blood. 

He. Is. Now. Your. Best. Friend. 

OR that resembles Room A. 

Strip robe and porn thong. 

Lay like filet. 

Nurse sponges you a lovely shade of Trump. 

Shit gets real. 

The posse arrives. 

IV goes whack. 

All goes black. 

So what happened while I was out? My surgery took a little over 2 hours. While the bulk of the extracted Stem Cells were spinning to propagate, he took the leftover cells and created a Stem Cell 'paste'. While I'm still out, the doctor then injected this paste in and throughout the muscles surrounding the effected areas of my spine. Meaning, my entire spine. The average person's extracted cell count before spinning them usually numbers 60-80 million. My body kicked arse at 326 million! Again, this could have been due to the fact that my fat was concentrated. You'd think the larger the person the more Stem Cells, right? Wrong! We all have the same number of Stem Cells, so a larger body the more difficult it is to gather a higher number of cells. It's like fishing in a pond versus the ocean. So, what seemed a curse in the beginning actually became my blessing. 

I was then moved back to Room A. As I lay on the gurney, the nurse brings in two large push up pop - looking syringes.  Or are they calking guns? Turns out these are filled with my Stem Cells! She hands them to me for my Stem Cell Selfie! Didn't know this was a thing - Like when you lose a tooth. Each syringe was filled with a pretty in pink strawberry Cream fluid  responsible for the oozing experience I had that night. I was now the very proud mommy of two very large batches of cells. 326 babies! I hand them back nervously hoping no one could have the slightest chance of abducting them. They are quickly inserted into my IV and off they went! A stream of life back into my body ready to satisfy the most magnificent orders they've ever received. Navy Seals only pink. My husband and I watched these beautiful little creatures disappear with a mission so impossible yet not a complaint to be heard. My little babies coming back to mama to fight a war. Bit by bit they become one again with me and at once I am hit with the realization that this is not a procedure. It's a miracle. These are not just cells. They are warriors marching into battle to eliminate and conquer. To defeat the inflammation that has stolen my life. They are creating new cells, and eradicating scar tissue adhered to my bones, the nerves within the dura of my spinal cord hardened with plaque blackened to defeat. These are Heroes. And their mine. Sitting in a body for all of these years waiting for purpose. I am now officially a war zone. 

The post-op recovery is a pain I understand and appreciate. Even though my torso resembles a child's sprinkler head, it's mine and it's brave and empowered. 

I am told the transplant recovery will be a roller coaster. The days I feel defeated are the days battles are being won.  I am and will be under construction for the next nine months. Like an embryo to a child. The days I am a warrior, my cells are in retreat. Retreating to recharge to begin another war. 

I am an army now. Until this ends and I begin I will learn what it's like to die and be born. A journey unlike the one I've endured of this limbo of a life. I don't have the answer as to what I expect but to expectations are dreams unfulfilled. My body does not have to be perfect for my life to be beautiful, meaningful and grand. But if this ends with the life I have endured these past years as a distant memory, and the blessings and lessons procured, then a war will have ended with peace on both sides and a heart with a souls that's been mended.  

Blues Shoes

Silly Blue tried out her first pair of shoes as we are heading to Scottsdale where temps soar to 122! She finally mastered them but not without a rocky start. I think she was just attempting an imitation of a platypus, you decide!

My Stem Cell Procedure and Why It's Different

We are driving through the Arizona desert from Los Angeles on our way to Scottsdale for my Transplant tomorrow morning! Finally, my Stem Cell Transplant is here! Some have asked how it's possible to have this done in the United States. This doctor is the ONLY doctor FDA approved in the US to perform this very specific type of Stem Cell Transplant. Normally you can have cells extracted in the US then spun and sent to a facility in Cancun for example where your actual transplant would take place days later. It would cost around 20g and require multiple sessions 4-5 times over a period of a year or so. Both of these issues make it extremely difficult for most any chronic pain patient. 

Dr. Malan specialized in this protocol in Europe and has performed over 3,000 procedures. The FDA certified Dr. Malan to perform this procedure in the US due to its success and with it considered a 'trial' to discover the safety and efficacy of the reintroduction of Stem Cells to a patient and the long term effects of doing so. That said, this is how his protocol differs. Instead of 5-10 million cells, he extracts a hundred to hundreds of millions at one time, and transplants them in the same day, a 4-6 hour process, and on an out-patient basis. One time. One procedure. Your progress is then followed over the following five years to be documented in the trial. 

This type of stem cell transplant is autologous cell therapy -Stromal vascular fraction- containing adult mesenschymal stem cells concentrating on treating degenerative or inflammatory conditions. Approximately 90% of pain is caused by inflammation. One effect of this procedure is the elimination of inflammation, damaged cells, and the promulgation of healthy cells literally rebuilding the body where it's needed. The cells intuitively know where the inflamed areas of the body are and like an army march in to repair. Along with the IV Transplant, he also creates a Stem Cell Paste and will coat the affected area of my spine. Many people have asked if this is the kind of therapy a cancer patient might look into. It is not. A patient with active cancer is not a candidate for stromal vascular fraction deployment research. 

The conditions for which I am undergoing this transplant are Arachnoiditis (the hardening and bonding (by turning into plaque) of  the nerves within the dura of the spinal cord, as well as CRPS or Complex Regional Pain Syndrome of the spine. Both of these conditions are above childbirth and phantom limb on the McGill Pain Scale. Both are considered incurable, but if can have phases of remission.  

I have tried every possible treatment under the sun (well, my sun anyway) and have researched Stem Cell treatments for three years now. It wasn't until a dear friend of mine, Tootie (yes her personality is reflective of her name!) introduced me to Dr. Malan after she underwent his Stem Cell protocol for Arachnoiditis in her spine and CRPS (of her foot). Talk about a friend you can relate to! Hers was about three months ago. Our lives had paralleled with bed containment or laying prone 80-90% of the day - although she still did everything in her being possible to still trudge through each day, the tears were never-ending behind closed doors. We've endured flares requiring repeated hospitalizations and spinal contractions lasting weeks to months at a time every 10-20 minutes around the clock. An existence of survival more than that of a life. Although we both have tried our best to make the most out of our situations, putting on a brave face for our loved ones and living for life between flares, never in our wildest dreams did we ever think there could actually be hope. Real hope. 

Within 48 hours of Tootie's transplant she could move the toes in her affected foot that hadn't moved since 2003, and she is now back to living the life she dreamed of - up at 8am and until 10 at night. Now, this doesn't mean she is completely out of the woods, that pain episodes are gone forever - our conditions are complicated and the post-operative healing process is a roller-coaster with 6-9 months on Colossus, but her world is actually hers again. She is once again the mother and wife she wanted to be for so long.  She smiles from the inside, not with just a painted expression for others to appreciate. 

Her heart is lighter and most days seem shorter as they are now something to enjoy rather than endure. All of this I hope my life to be, and I'll have her to thank for everything my life might be able to become. And for once I sense the a stir in my core that seems to occur when God has a plan in mind. Whatever the outcome I have never been more ready to have faith not only in the plan, but in myself and everything I believe I can be. 

http://www.mystemcelltherapy.com/

Service Dog Denied Virgin Atlantic Update

As of May 15, 2017 Virgin Atlantic has replied to my letter that they are looking into properly training so this 'never happens again'.

 So, not exactly implementing a training program....

 Dear Mrs Bensko

 Thank you for your email of 15th May with your thoughts and comments.

 I am grateful that you brought this incident to our attention and am truly sorry that we let you down. Whilst it arose as a result of a genuine mistake, as I said in our telephone conversation, we have launched an immediate investigation and review of our training for our customer facing teams, to ensure that this does not happen again. The action we are taking goes beyond simply sending an email as you mention.

 I am sorry that you feel the gesture offered to you was note appropriate. It was made with the best of intentions to replace your poor experience with a very positive one.

 Once again, I apologise on behalf of Virgin Atlantic and sincerely hope that you will allow us to restore your faith in our service.

With best regards

__________

_________ ___________

Executive Vice President – Customer

Virgin Atlantic

This is just a first step in trying to eradicating a national virus affecting our disabled population from within the corporations of our travel and service industries.

I have written to Senators Feinstein and Harris, filed official complaint with Department of Justice and Transportation who have opened an official investigation into the discrimination and violation of the Air Carrier Access law (the equal of and predecessor to the Americans with Disabilities Act). To ensure this momentum continues forward I am supported by an invaluable dream team of individuals:

Heather Ansley Associate General Counsel for Corporate and Government Relations at Paralyzed Veterans of America (PVA) works to promote collaboration between disability organizations and veterans service organizations by serving as a co-chair of the Consortium for Citizens with Disabilities (CCD) Veterans Task Force and was instrumental in the development of the 1973 Air Carriers Act of America. 

Marca Bristo founder of Access Living and an international advocate for the rights of disabled individuals. During the 1980s, as a member of the Congressionally appointed United States Task Force on the Rights and Empowerment of Americans with Disabilities, she helped draft and win passage of the Americans with Disabilities Act. In 1994, President Clinton appointed Bristo to head the National Council on Disability, an independent federal agency that provides policy guidance to the U.S. President and Congress. Bristo was the first person with a disability to hold this position. Today, as President of the United States International Council on Disabilities, a federation of US disability organizations committed to fostering Disability Awareness inclusion and rights overseas, she is leading a campaign to promote the ratification of the UN Convention on the Rights of People with Disabilities in the United States.

And James Weisman, who is now my official representative, is president and CEO of - and general counsel for - the United Spinal Association and a dedicated advocate for over 38 years who also helped expand disability rights and ensure access to transportation for wheelchair users across the country. 

It is essential that ALL individuals who have been subject to discrimination in our airline industry post their story to this Air Access portal: http://www.airaccess30.org/. These WILL be used in PVA's current and on-going advocacy efforts on Capitol Hill. You WILL be heard. Without these stories the odds for change are insurmountable. 

Also, here is a link to the regulatory docket for DOT's efforts to amend the service animal regulation under the Air Carrier Access Act: https://www.regulations.gov/docket?D=DOT-OST-2015-0246. Please submit your comments and ideas for proposed legislation here. Again, these are not lost in a virtual world but are tangibly used to submit necessary legislation expanding the reinforcement of the rights of service animals nationwide. 

Again, thank you everyone for without each and everyone of your comments, shares and voices, none of this could have been put in motion on very personal journey to just for each and every Disabled American in search of not only acceptance, but even more importantly, justice. 

News Agencies Bringing Awareness to Our Story

 

Progress Since Service Dog Denied

Today has made leaps forward in progress. Essential first step was understanding ADA violations and it's boundaries vs the ordinance of the ACA (Air Carriers Access)Where this falls in regard to Civil Rights violations, etc. Am speaking with various entities actively submitting legislation in support of access in the airline industry. Assessed where my incident falls in regard to airline violations as well as state vs federal. Discovering where to concentrate so the greatest impact can occur without spinning wheels (so to speak). Got in contact with several disability rights organizations including PVA (Paralyzed Veterans of America) and am hoping my story (although I know there are a million others) might be of assistance in any of their pending legislation as well as fostering of new regulations. Screaming from the mountain top, even if my wheels are getting caught up in the crags here and there. Each step forward is because of the invaluable information so many of you have sent me. Thank you for uniting together in the creation of this battle plan for disability rights. Marching on!