Open Letter Re Denied Entry at Virgin Atlantic

Open Letter Re Service Dog Denied at JFK

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…

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. 

Virgin Atlantic Lounge Denies Us Entry

 Click for videoAll of us have experienced it. An airline employee more robotic then human. We have all seen the videos of late. A man dragged down the aisle, a mother and her child sideswiped by a stroller. These have us all up in arms. We think we have seen it all and then there's more.

 Watch Video Here: http://youtu.be/b3BK0WUx7vs

My service dog Blue Belle and I were denied entry to the JFK Virgin Atlantic lounge due to their 'policy' and the 'possible discomfort of others'. Three employees stood behind the counter, not just one uninformed employee. This lounge is not a luxury for me, flying in a lay-flat seat is not a luxury but a financial burden and a necessity. My condition is Arachnoiditis and Complex Regional Pain Syndrome of the spine. I am also in a wheelchair so every step of a travel plan must be carefully laid out with crossed and dotted eyes. I read every policy, I compare it with ADA laws and regulations. I call customer service and speak to human beings to make and confirm our (mine and Blue Belle's) travel arrangements. Blue Belle wears her vest clearly marked with 6"x2" panels that say SERVICE DOG. I carry her vaccination papers with me at all times as well as pay the extra $75 to be in the airline's lounge for even one hour because sitting for any extended period of time (which can mean 20 minutes if I am in a flare) can send me to the hospital with spinal contractions with levels on the McGill Pain Scale above childbirth or phantom limb. If I am not already in a flair, this can send me into one. Stress can also be a contributing factor to this. I am not telling you these things for a pity party, it is simply the reality of millions of forgotten or dismissed individuals others shy away from from it takes too much energy to see.

I am not jumping on a bandwagon. I have simply experienced these excruciating episodes while traveling one too many times. You might call it death by a thousand cuts. This is my story from last night - one I am physically unable to hold within and hope it can somehow spark a change in how airlines and corporations train (or in this case, don't train) their employees as to the federal laws mandated specifically to protect the disabled.

I hope my experience opens this conversation much needed between the airlines and the ADA community.

#AirHumanity

Micaela Bensko

www.FriedNervesAndJam.com

BREAKING NEWS: New Drug for CRPS

Article is from www.PainNewsNetwork.org

Whenever I see articles about CRPS or advancements in studies regarding it, there is always a conservative excitement as we never know what's going to stick. However, this one seems to be getting more attention than others and the article itself is very interesting.  Any and every bit of progression in the awareness of CRPS and studies of it, are another step forward in our journey toward the light. I mean that in a good way, not the 'we're passing over to see the pearly gates and meet God kind of light. Just want to clarify that.

Pain News Network

By Pat Anson, Editor

The U.S. Food and Drug Administration has designated an experimental drug as a potential breakthrough therapy for Complex Regional Pain Syndrome (CRPS), a chronic and disabling neurological disease for which there is no cure or treatment.

Neridronic acid was discovered by Abiogen Pharma, an Italian drug maker, and is jointly being developed with Grünenthal, a German pharmaceutical company. 

The Breakthrough Therapy designation by the FDA came after the companies reported the results of a Phase II clinical trial showing a significant reduction in pain and symptoms of CRPS with neridronic acid treatment. The drug has already received fast track and orphan drug designations from the FDA.

The agency considers a new drug as a breakthrough therapy if it is intended to treat a serious condition and if preliminary clinical evidence demonstrates substantial improvement over current treatments. There are no current FDA approved treatments for CRPS, which is also known as Reflex Sympathetic Dystrophy (RSD).

"It is very encouraging to see that the FDA recognizes the urgent need for new treatments for patients with CRPS and has granted neridronic acid the status of a Breakthrough Therapy. This supports our efforts to develop an efficacious treatment option to these patients,” said Klaus-Dieter Langner, MD, Chief Scientific Officer of Grünenthal. “We are committed to working closely with the FDA to bring neridronic acid to patients with CRPS as fast as possible.”

In the Phase II study, neridronic acid or a placebo was administered intravenously to 464 patients with CRPS type 1, when the disease is in its early stages. The study ended in November.  

A previous study of 82 CRPS patients in Italy found that those who were treated with infusions of neridronic acid experienced significant and persistent reductions in pain.

Neridronic acid is currently being evaluated in a Phase III clinical trial. If successful, the drugcould be the first FDA-approved treatment for CRPS, which is characterized by severe, burning pain that usually begins in the arms or legs after an injury or surgery. The pain often spreads throughout the body.

"Grünenthal is highly dedicated to improving the lives of patients with pain as well as rare diseases with limited treatment options. This is an area of high unmet medical need,” Gabriel Baertschi, CEO of the Grünenthal. 

The company recently purchased Thar Pharmaceuticals, which is developing an oral form of zoledronic acid for the treatment of CRPS. That drug is also undergoing a Phase III study.

Neridronic acid is an investigational aminobisphosphonate. According to the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA), bisphosphonates have been used for years overseas to treat CRPS.

“We need options and if this can help patients and encourage other medications and treatment options to come onto the market for CRPS’ers, it’s a great thing,” said Barby Ingle, who suffers from CRPS/RSD and is President of the International Pain Foundation. 

“We saw with fibromyalgia and Lyrica that once it (fibromyalgia) had a medication designated it gained more awareness and acceptance in society, leading to better access to care. The same could happen with a CRPS designation for a medication, leading to greater treatments and a cure in the future.”

Results of First IV Ozone Infusion

Ozone IV Update:

The results of the IV Ozone Infusion yesterday have been interesting to say the least. As my stem cell transplant is still considered a trial (even though my doctor has done over 3,000) they are requiring a certain patient population to supplement their transplant with additional medical procedures prior to and post op to help garner more data on the procedure protocol and results. For me, it is undergoing Ozone IV Infusions. 

The initial side effects were fatigue and a pretty intense headache that lasted through noon today. This afternoon is where I noticed the greatest improvement in my condition. Normally I am unable to sit no longer than 20 minutes at a time, only two minutes at a time when in an active flare. Today, I went to my daughter's riding lesson and was able to sit in my chair the entire time which was an hour and a half. Ozone infusions help greatly with inflammation and a majority of pain is caused by inflammation. I have not necessarily had an increase in energy as was a possibility mentioned to me by the nurse. She also suggested I may feel a sort of nesting syndrome and to not overdo it physically if it occurs which has not been the case as well. However, it seems the greatest benefit I am noticing has to do with decrease in my pain levels, which is one of the greatest results I could ever hope for. Just to have one afternoon to simply enjoy life as it should be is a gift. Although this is only a temporary improvement and one of five infusions I am to undergo prior to The stem cell transplant in June, this exercise in experimenting with the human body and discovering its potential is fascinating and one I am excited to be a part of!

IV Ozone Infusion Therapy

IV Ozone Infusion at Optimal Health and Wellness Center Pasadena, CA

The Fatty Fish in the Sea - Stem Cell Prep

Part of undergoing my stem cell transfusion is needing to gain some weight. And not healthy weight. I know it sounds contra indicative but the type of environment needed for the extraction for myself personally will be better achieved by my consumption of rather unhealthy fats for a brief period of time. It's the first time a doctor has ever told me to eat as much crap as I possibly can before a medical procedure. Technically, a patient needs to be able to pinch at least one inch of actual fat, not muscle, in order for a successful extraction. For most people this is not a problem. For someone with a chronic health condition, this can sometimes be nearly impossible. Due to my most recent flare through which I endured more than 7 months of excruciating pain levels often exceeding the McGill Pain Level of childbirth, I dropped from a USA size 10 to a size 2. I'd list my weight but since I'm in a wheelchair I haven't been able to weigh myself properly in years. (Now that's one of life's hidden blessings if I've ever seen one, eh!?). As wonderful as this might sound to some, and lord knows I too once envied the weight-loss captions of celebrities in The Enquirer, it is a bit disturbing when your water balloons have been sucked dry like the California drought. Dear God give me some rain here would ya?

Plus, my bikini struttin days are pretty much behind me, so my wish of being skinny has morphed more into a nightmare of wet dreams. Wait, I meant for the water balloons. Oh, never mind. 

Back to the stem cells. There's a method to the madness of eating  bad fats to gain the type of weight I need for the procedure. By eating a healthier protein based diet, the weight will be more muscle than fat. Stem cells we need, are extracted from fat. Not muscle. But too much fat (fatty weight gain) isn't good either! I'll explain in a minute. In order to gain the weight I need, I'm to replace olive oils with fatty oil's and margarine instead of butter. Eating too much protein puts on muscle so the logical option of chicken and meat is not on my menu. Instead I am to opt for fried sausages and bacon, pancakes and breads, hamburgers with extra cheese and french fries and milkshakes. (if this sounds like fun, trust me it is not! I have never felt so sick in my life! That'll teach me for living a healthy diet! ) A health challenge already turns your entire system upside down. So right now mine is pretty much  schizophrenic.  

The concept is when extracting stem cells, it is essentially a liposuction to extract fatty tissue within which the stem cells thrive. However, too much fatty tissue does not mean you get a greater number of stem cells, so in gaining weight, one needs to be careful. Think of the amount of fat your body has, as an ocean, and the stem cells as a certain number of fish swimming in that ocean. If you cast a net in that ocean, you're going to get a certain percentage of those fish. Now instead of an ocean, consider a moderate amount of fat to work with as a lake with the same number of fish (or in this case stem cells). When casting the same sized net through a lake, you are going to gather a greater amount of fish than if in an ocean. The goal in extracting fat for stem cells is to obtain the greatest number of stem cells possible. So my goal is to have to gain just enough fatty fat (love alliteration) in order to garner the greatest number of stem cells without gaining too much fat that it makes it more difficult to fish out the fish! Oh! And he said if I really want to pack it on, skip breakfast and only eat a big lunch and a late dinner right before I go to bed! So let that be a lesson to all of us who think skipping meals is a good diet strategy!

All that said, I have two months to work with, so not exactly pulling out the emergency Double Doubles yet, but certainly looking forward to eating from the x-rated menu I've salivated over for so very many years. 

A Success Story of Stem Cell Transplant with Dr Todd Malan

Dr Sarah's Story with Stem Cell Transfusion under Dr. Todd Malan's Technique

We have decided to move ahead with the stem cell transplant. It will most likely be the second week of June. Spoke to the doctor for an hour this morning in Scottsdale and learned so much. Pretty much a crash course Boot Camp in stem cell engineering! I look forward to documenting this process on my blog during the transfusion and after. If this can help in anyway anybody who suffers from chronic pain, CRPS or arachnoiditis and any other debilitating disease that has stolen your life, this will all be worth it.  Making a decision such as this is one that we do not take lightly. It has been almost a year of research and following several cases undergoing the transfusion. Ultimately one of my dearest friends who happens to have my identical condition of Arachnoiditis and CRPS,  underwent a specific type of transfusion done solely by one doctor in particular out of Scottsdale Arizona and her results have been magnificent. The doctor is Dr. Todd Malan. I have never felt so confident in a decision in my life. I look forward to sharing this experience with you all.