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The Soldier and the Squirrel introduces children to the Purple Heart

through a loving story of a friendship between a newly wounded soldier

and Rocky the squirrel with his backyard friends. This story began as a

blog during my first year in bed after my incident. With much

encouragement, it is now a book and has been placed in the

Ronald Reagan Presidential Library & Museum. Please watch the video

on the About page to learn for the Soldier & Rocky are changing children's

lives.

 

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Sunday
Jul022017

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.  

Friday
Jun302017

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.  

Tuesday
Jun272017

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!

Tuesday
Jun272017

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/

 

 

 

 

 

  

Monday
May222017

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. 

 

 


Tuesday
May162017

News Agencies Bringing Awareness to Our Story



 

Tuesday
May162017

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!

Monday
May152017

Open Letter Re Denied Entry at Virgin Atlantic


Open Letter Re Service Dog Denied at JFK

 

Friday
May122017

The Washington Times

Virgin Atlantic responds after disabled woman says she was barred from lounge over service dog

Virgin Atlantic has vowed to remind staff about its policy regarding service animals after a disabled California woman says she was denied entry to the airline's waiting lounge because of her dog. Micaela Bensko, who is handicapped due to chronic pain issues following a 2011 car accident, told Fox News that she and her dog, Blue…

Friday
May122017

Virgin Called

Video of Incident: https://www.facebook.com/bensko/videos/10155175306050256/

The Executive VP of Virgin Customer Relations from London has called. We had a rather lengthy conversation. I do believe he is genuinely remorseful, and his apology well meant however I'm afraid I'm still too raw, physically exhausted and emotionally drained to engage in what they 'can do to for me to make this right'. My emphasis remains upon the fact that this lack of proper training goes well beyond Virgin and spills throughout our entire US fleet of domestic airline companies. He explained their employee as having an impeccable reputation, I countered that this goes beyond how well someone follows policy and well into the fact that the humanity is no longer allowed a seat at the service table. Virgin has always placed its emphasis on creating a new and improved culture, which is what makes this event even more exasperating knowing it can even happen with them. Employees are trained to stay cool and hold their ground without any leeway for empathy or sensitivity to the human condition. One explanation this most likely occurred was that the employee probably assumed that the international flight rules applied to the Virgin Atlantic Clubhouse in that all service animals require documentation, and it was the Virgin Atlantic lounge in which this occurred. However, once again, here's our plight as to our ADA rules and regulations not being implemented properly. Their lounge is in the general population area, not in an international terminal. To board an international flight of course there is a litany of steps in the proper protocol such as vaccinations, a letter confirming it's a service animal more so to prevent any issues along the way and one should have it translated into the language of the country you're visiting, etc but this Lounge is used by anyone eligible for entry flying on Virgin Airlines and clearly on US soil. This is the exact type of oversight occurring in today's training. Virgin truly wants to "make it right" with us. I'm talking it over with Blue but she seems as exhausted as I am. Virgin wants to show and express to us how very much Virgin does care for its passengers and asked me what I would need to make it right. I said what I need is for you to please join me in taking a stand in making a statement that this type of treatment and corporate culture is not okay and it needs to change. The conversation, though well meaning, reverted to what Virgin itself could do to prove to me they truly do care for their passengers. I sensed a resistance of willingness to join me for this swim in our toxic environment of airline swamp water. They are a London based company with other concerns I am sure. I gave him my answer as to how to make it better in requesting Virgin take this moment to take this moment with me to be an example of a corporation self-correcting. He assured me he sent out a notification ensuring this will never happen again on Virgin and I do believe his personal intentions are true. This company was founded by Richard Branson, one of the greatest humanitarians of all time. My dialogue with Virgin is not closed, this is all about opening the conversation. But making it better for me is far from why I took this stand from my chair. He stated that in the eleven years he has worked there he has never witnessed any so atrocious. I voiced that the reason you don't see it, or hear about it is there are millions of people every single day who experience such humility at the hands of someone's nephew in a hat and a badge who feels empowered by their status in the rankings of customer domination. The disabled community is too tired from simply trying to exist on this planet to be writing letters and complaining to a ceiling made of titanium. This call was from a human being, I can sense this and appreciate the fact he reached out to me personally. It's just that this is going to take much more time and healing both physically and emotionally for me to utilize my energies in any other manner than to try so very hard to promote change for the population of disabled individuals of which I'm so very proud to belong.