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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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Friday
Apr212017

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.”

 

 

 

 

 

Wednesday
Apr192017

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!


Tuesday
Apr182017

IV Ozone Infusion Therapy 

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

Thursday
Mar232017

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. 

Thursday
Mar232017

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

Tuesday
Mar212017

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.

Wednesday
Feb152017

Tips From Training My Service Dog

I know, wow is this a twist of conversation! However, this is how this brain works. Give a girl a cookie and she turns it to a dog treat! 

 

My friend just got a puppy for her family. A precious Golden Doodle oodling cuteness through its pores. However the reality of owning a puppy has hit hard and fast and having trained numerous pups of our own, including my service dog, I have learned a few tips along the way. 
Enduring a puppy is SO hard. You are not alone! I swear the first time I experienced taming this beast I realized why God made them so darn irresistible we can't imagine looking at them the wrong way. But believe me, it does pass! But only if you truly got a pup with the intention of reserving six to nine months of your life to dedicate a part of your soul to molding him into the family member he's meant to be. Begin by tethering him to your side. I literally had to do this with my service animal, Blue Belle. It took ten months, she almost ran me into oncoming traffic twice, but how I wouldn't trade those curveballs now for anything in this world. 
Take him EVERYWHERE you can. Expose him constantly. Take him out on the grass every 40 minutes and praise him when he goes. 
Blue was the most untrainable dog EVER. I mean it. The fact that we could not leash train her is the very reason she works for me as a service animal because she pulls me everywhere I go. But she had to learn everything else , every single move I make - opening doors etc. but no great effort was really needed, it just happened naturally with time and repetition. Over time, she sensed what she was supposed to do. I just had to be willing to commit myself to be a Siamese twin for as long as it took for her to become my world. It took 10 months, but we did it! She's still learning every day. But if a dog isn't fully immersed in YOUR routine, not one you are trying to create for HIM, he will naturally fall in line, but it's going to take time. 
If you can't take him with you, put him in a crate. They actually don't mind it. A little blanket, bone and water and they're off to dreamland. Also, they are averse to soiling their own quarters so will at least try not to pee. 
Keep a bone around 100% of the time. He's teething constantly and it's painful so if he chews it's the one thing that helps. This is when our pups are so often disciplined as being a bad dog, when actually they are only doing what comes naturally and don't know another way. Of course nip his nose and say no to your things, but then replace it right away with the bone or toy and praise his cute little nose. 
When he's around 8 - 12 weeks old and has had his appropriate shots, start taking him to the dog park at least twice a week. Go into the small dog pen and let him run around and smell and socialize with other dogs. The larger dogs are not a problem, it's more that their size can be a bit of a challenge for small pups to be around. If you try to attend a "Puppy Hour" at your local pet store, remember, there are a hundred pound six month old puppies too, so don't be surprised if you find yourself a bit shocked when a Great Dane used your Fido as a soccer ball. 
Socializing outdoors is a way for him to adventure but also discovering you as a protector and pack leader. He'll start following behind you and hiding behind your legs. It's ok and so important he's exposed to other dogs with you as his teammate. Keeping him away from other dogs is one of the worst things to do. It's also a way to get his energies out by playing, he will also sleep better at home and not use his unspent energy tearing up his own home!
Sometimes a play pen is a good idea! 
Keep the pee pads out but start moving them closer to the door where he's going out to pee. 
Get a baby gate so he doesn't wander upstairs and pee on the carpet and in bedrooms. 
Remove all carpets or rugs from downstairs if you can until he's trained. It saves a ton of stress and carpets too. 
The less area he has to wander free, the less damage he can do. 
Open your front door and place a baby gate in the doorway. I use a nice fire guard that is easy to put up or move. I like fire guards that sit flush to the ground because I can choose a pretty barrier to the entrance of our home and it will keep him from squeezing through underneath to get out. However our dogs are grown and trained so a guard acts as a deterrent. For pups, I'd recommend a secure baby gate. (It'll get your neighbors talking, too.) He will learn that when people come to the door it's a good thing. As he watches outside through the gate he'll see other dogs and kids and cars and become familiar with the sounds and visuals that often make dogs nervous or react. 
In regard to food, never leave a full bowl out to graze. Feed him once in the morning and once at night at the same time each day. If you're going to give him a snack. Please make it a healthy piece of chicken or meat. So many foods, even fruits, can be bad for him and his tummy. Can't get mad if he poops green aliens out of his bum because you decided a celery stick would be a good substitute for a bone. 
Leave fresh water out all of the time, especially in the crate. 
But most of all try to be patient. A dog is truly only as good as the effort put forth by its owner. He came into your life for a reason, it's up to you what that lesson is meant to be. 

My friend just got a puppy for her family. A precious Golden Doodle oodling cuteness through its pores. However the reality of owning a puppy has hit hard and fast and having trained numerous pups of our own, including my service dog, I have learned a few tips along the way. 
Enduring a puppy is SO hard. You are not alone! I swear the first time I experienced taming this beast I realized why God made them so darn irresistible we can't imagine looking at them the wrong way. But believe me, it does pass! But only if you truly got a pup with the intention of reserving six to nine months of your life to dedicate a part of your soul to molding him into the family member he's meant to be. Begin by tethering him to your side. I literally had to do this with my service animal, Blue Belle. It took ten months, she almost ran me into oncoming traffic twice, but how I wouldn't trade those curveballs now for anything in this world. Take him EVERYWHERE you can. Expose him constantly. Take him out on the grass every 40 minutes and praise him when he goes. Blue was the most untrainable dog EVER. I mean it. The fact that we could not leash train her is the very reason she works for me as a service animal because she pulls me everywhere I go. But she had to learn everything else , every single move I make - opening doors etc. but no great effort was really needed, it just happened naturally with time and repetition. Over time, she sensed what she was supposed to do. I just had to be willing to commit myself to be a Siamese twin for as long as it took for her to become my world. It took 10 months, but we did it! She's still learning every day. But if a dog isn't fully immersed in YOUR routine, not one you are trying to create for HIM, he will naturally fall in line, but it's going to take time. If you can't take him with you, put him in a crate. They actually don't mind it. A little blanket, bone and water and they're off to dreamland. Also, they are averse to soiling their own quarters so will at least try not to pee. 
Keep a bone around 100% of the time. He's teething constantly and it's painful so if he chews it's the one thing that helps. This is when our pups are so often disciplined as being a bad dog, when actually they are only doing what comes naturally and don't know another way. Of course nip his nose and say no to your things, but then replace it right away with the bone or toy and praise his cute little nose. 
When he's around 8 - 12 weeks old and has had his appropriate shots, start taking him to the dog park at least twice a week. Go into the small dog pen and let him run around and smell and socialize with other dogs. The larger dogs are not a problem, it's more that their size can be a bit of a challenge for small pups to be around. If you try to attend a "Puppy Hour" at your local pet store, remember, there are a hundred pound six month old puppies too, so don't be surprised if you find yourself a bit shocked when a Great Dane used your Fido as a soccer ball. Socializing outdoors is a way for him to adventure but also discovering you as a protector and pack leader. He'll start following behind you and hiding behind your legs. It's ok and so important he's exposed to other dogs with you as his teammate. Keeping him away from other dogs is one of the worst things to do. It's also a way to get his energies out by playing, he will also sleep better at home and not use his unspent energy tearing up his own home!Sometimes a play pen is a good idea! Keep the pee pads out but start moving them closer to the door where he's going out to pee. Get a baby gate so he doesn't wander upstairs and pee on the carpet and in bedrooms. Remove all carpets or rugs from downstairs if you can until he's trained. It saves a ton of stress and carpets too. The less area he has to wander free, the less damage he can do. Open your front door and place a baby gate in the doorway. I use a nice fire guard that is easy to put up or move. I like fire guards that sit flush to the ground because I can choose a pretty barrier to the entrance of our home and it will keep him from squeezing through underneath to get out. However our dogs are grown and trained so a guard acts as a deterrent. For pups, I'd recommend a secure baby gate. (It'll get your neighbors talking, too.) He will learn that when people come to the door it's a good thing. As he watches outside through the gate he'll see other dogs and kids and cars and become familiar with the sounds and visuals that often make dogs nervous or react. In regard to food, never leave a full bowl out to graze. Feed him once in the morning and once at night at the same time each day. If you're going to give him a snack. Please make it a healthy piece of chicken or meat. So many foods, even fruits, can be bad for him and his tummy. Can't get mad if he poops green aliens out of his bum because you decided a celery stick would be a good substitute for a bone. Leave fresh water out all of the time, especially in the crate. But most of all try to be patient. A dog is truly only as good as the effort put forth by its owner. He came into your life for a reason, it's up to you what that lesson is meant to be. 

 

 

Tuesday
Feb142017

CRPS Arachnoiditis and Me

 


Someone asked what my pain is like. I paused and wondered how to fill a universe of thoughts into the tip of a pen. 

I rarely go into the how or why. every life challenge has similar phases we go through, much like the process of acceptance of death. 

I am a wife and a mother of four two-legged people and three four-legged people and had a pretty cool career as a destination photographer. My success was mostly based on a fluke - I happened to shoot my very first wedding on a Saturday that had a celebrity attached who happened to ask me to send a few favorites to him that night which he liked who happened to be going on Martha Stewart Living on Tuesday. Big breath. Martha Stewart then showed my images on air and talked about them too. That's a fluke. I came. I shot. I was conquered. 

On October 28th, 2011 I was unloading groceries from the back of my car and pushed the button for the tailgate to close which was inside of the interior of the trunk, bent down to pick up my last bag of groceries, stood up swiftly but just as I always had and at no more than a quarter of the way up with bent knees, the corner of the electric powered tailgate jammed into my left temple and stopped it in its tracks. ER. Tylenol. Home. 

As time passed I kept expecting to heal, but the pain only worsened with every treatment I tried. A surgeon then showed me on X-ray that the natural curvature of my neck was literally inverted, a disc in my lumbar spine had blown, but could not account for the mind-bending pain beyond what you'd expect to see, as well as the paralysis seeping into my limbs. Thirty surgeries and surgical procedures later, I was finally diagnosed with CRPS as well as Arachnoiditis exacerbated by CRPS. Both of these are officially listed as the most painful conditions in the world. Worse than childbirth. Worse than phantom limb. 

CRPS is a neurological disease that develops from a surgery or injury that causes pain signals to malfunction. Signals that would normally end only increase and intensify to the point of hospitalization. Mine is in my spine. 

Arachnoiditis is caused by any puncture or irritation to the spinal canal. It is the scarring of the nerves within the dura that gradually harden turning the nerves into plague. 

Neither are curable. 

A blessing is there are windows between the flares which last from weeks to months to years. Within a flare are episodes which occur every 10-20 minutes like clockwork, just like the pattern of labor contractions, only these occur around the clock. At the peak of a flare, hospitalization is the only option, my shortest has been a week. Each episode begins with a simmering haze of a flame that stirs in the middle spine. I will brace my fingers into my chair until they resemble an election map.  The flame begins to expand and swirl throughout the trunk like a warm bath your mother made but just a bit too hot. It is then a wrench makes its way from within the vertebral bones,  as though trying to split a log. Cue the lumberjack shirt, and a blowtorch now turned to high - but takes its time like a lover's hand. A child's head begins to crown between the discs. Flash to the lumbar spine about to crown. 10mm - we're almost there but without an angel at the other end. Its shoulders breech through the spinal cord, your body flails to get away from itself. A primal wale announces your humanity as you return to a fetal state as butcher knives slowly grind into your thighs, shoving along the grain of bone to remove all evidence that you were there. The legs begin to shutter like a hummingbird's wings without a flower from which to drink. It is now your legs have a life of their own The body shudders from its core whispering its mantra  "Go away, go away go away" as though the slightest chance of being heard might just make it all go away. 
Three minutes you delve into a place so dark it lies between the light. A fading of the scene into the eye of the storm. Soon it will all begin again. 

I'm just gradually rising from a chain of flares that lasted seven months. For now I sit in wait. A move to the wrong right can send me down the rabbit hole again with the Cheshire Cat to offer some tea. 

This is my reality. 

But it is not who I am. 

I am not the fire. I am not the butcher knife that burns through my bones. I am not the vice that wrenches my spine.  I am not the pain. I am not that kind of flame. I am solid white. Not because I am pure. I am a canvas for everything I have to learn and never dreamed I could become. I have discovered the power of the human spirit. Its thirst for life so strong it could run the rivers dry. I hang my head in shame at the mere thought of assuming what is pain. 

Someone asked me how I stay positive. I don't. Every day there's something that makes me question God. Then something else assures me He is there. I feel guilty every time. But there are also  blessings revealed each day that unwrap a gift that gives me pause. A gift of time with my children, a moment with a butterfly I would have never noticed before, or a conversation with someone else that assures me that I am not alone. 

I am a canvas, strong enough to hold the image of what I am yet to be. A life that wanted so badly to fly and earn her  wings. 

One day this painting will be completed and framed with the strokes of what my life will be.  But this time I will stand from afar to see a beautiful image I was once too close to see. 

 

 

Tuesday
Dec132016

Broken As Clooney

It's true. We all can't wait to turn on the news to see which politician did something hypocritical. What preacher disobeyed God's teachings. What officer broke the law. Which parent broke his child. 

My daughter came to me with an issue. A professor said something unkind to her in front of the class. A professional she was taught to defer to, to respect, to follow. Her world was shattered for that time before we spoke - when I sat her down and reminded her how many wonderful and loving things had been said before, how could she let one person negate all the good? Isn't this the time to stop the madness and realize the imbalance of power a thousand good words has over one that hurts? 
But sadly, it's all too true - that kind words are powerful, but unkind words are atomic. 
So it is with our society today. In our media-riddled world of seeking the darkest in others. That the entire news broadcast is about the bad, with one good one at the end to "perk us up". The good doesn't bring in the ratings, otherwise it would be the other way around.  
Everyone is human. I know, this is tough to admit. We all want to imagine that Clooney is a god (although I can feel my DNA shift along with your own as I consider its validity) but that's because he never lets his guard down. And we never want him to. It would ruin the mood. 
We elect our politicians because they have the better ads, nicer look, most power to get things done, and then we wonder how they could possibly do anything so stupid as send a selfie of a snake. 
Why should the words from one human have weight over the words of another? 
Perhaps a key is to live your life knowing in your heart your own level of broken. I know, how depressing is that! We are taught to love our own magnificence. That we are each too good to treated poorly by others. This is true. But how can we deal with the hurtful times if we cannot empathize with the world view of the other who is unable to see the world as you do?
My daughter is a strong, A-type creative, opinionated young woman. Her professor is an  A-type, commanding personality.  No words even needed to be spoken to see these two would not be having tea. Yet this interaction stunned her to her core. Her world-view was shattered. The unexpected was almost worse than the altercation itself. The lesson from this? Pedestals should be for plants. 
Yes, there is protocol and decorum. But they are not law and can be broken at any time. The protection is to enter life knowing that no matter how high an office, how important an individual may be in your daily life, everyone is at first and foremost a flawed human being with a certain number of tools with which to deal with us other flawed human beings. Sometimes one has a dirty bomb, while the other has a hammer. And sometimes, all you have is the nail. 
In the end, we all belong here. Because we are here to learn, to look at our selves and discover our tools. Who knows, you might even lend one out to a friend. But none of us is perfect. However I may need to go back to that Clooney reference, just to make sure. 

 

Thursday
Oct132016

The Story Behind The Soldier and the Squirrel