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.
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.
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.
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.
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.
It was 1994. I was pregnant with our oldest child (she's now 22). My husband wiped the evening's meal off of Donald Trump’s limo. My morning sickness was terrible at night - Which somehow helped me blend in with the 2am bar patrons, unlike when our group entered Madison Square Garden for the KISS concert earlier in the evening. We did not blend in then, on a summer night in New York City, twenty years ago. Needless to say, we had a feeling this was going to be an interesting evening.
I was star struck as we drove through the city, but it wasn't The Donald that held my attention. Or his hair. It was the buildings. I couldn’t help it, I was young, but the good kind of young with an innocence that carried my up and through the sunroof of his limo. I stood with the warm summer air patting at my cheeks. Trump and his wife sat at my feet, my husband chalking up my odd behavior to howmones. It was a brief escape for my square peg through that round hole of New York's elite. It’s hard enough to feel like you belong anywhere when you are in your twenties, still trying desperately to discover who you really are and what you really want. The other wives were coiffed with designer clothes. Their hair was Blonde. The men were silver. The driver was anxious.
I was six months along. The top of my swollen belly pressed against the sunroof frame. Something about pregnancy makes you bold - brave enough anyway to allow Donald Trump to witness my swollen ankles like elephant feet cut off at the knees; the kind they make coffee tables out of.
We arrived at Madison Square Garden. As we entered the building, the audience began to stir like bees in a hive. Word travels fast in a sea of New Yorkers. They must have seen the hair. As we walked to our seats, the crowd grew louder, and louder.
Then he did it. The Donald raised his hand to the air - like Hitler with a toupee. The king of New York had addressed his subjects. (Remember, this was twenty years ago.)
The Garden rumbled. I turned to The Donald with a question mark. He shrugged his shoulders to the girl from the sunroof. He was used to all of this. The buzzing. The Garden. Girls thrusting through his sun roof. in that moment 80,000 swarming bees began to notice their king bee entering the hive as they waited for the KISS concert to begin. I envied people who were used to such things. It meant they belonged to something larger than themselves.
Then the chanting began. Dah-nuld! Dah-nuld! Dah-nuld!
We followed him through The Garden like baby bees. Then they got louder. Dah-nuld! Dah-nuld! I had never seen anything like it in my life, Nonetheless been stared at by so many people at once. Of course, they weren’t looking at me, but still, the sense of visual invasion was so overwhelming I wanted to suck my head so deep into my neck that it would lodge in my ribcage. But Dah-nuld? He loved it.
Trump is Trump. Love to hate him or hate to love him. Either way, it spurs a response. Sometimes a nauseating one. I tried to chalk that up to morning sickness, at night.
We finally made it to our seats. And I made it through the concert without throwing up. Until we went to dinner afterwards. And got back in his limo. A piercing stab in the corners of my jaw stung my bones. Gentle waves of nausea lapped at the back of my throat. My skin clammed and faintness overtook my jovial mood. Pull over, we had to pull over. I couldn’t do this in his limo. Lord knows what ever else happened in Dah-nuld's limo, but it sure wasn't going to mix with the precious juices of my pregnancy. My husband rang the alarm. She’s gonna blow! The limo came to a stop against the curb, I scuttled to the opened door overlooking the gutter, my head just barely reaching the moist wall of humid summer air. And it happened. I threw up all over Donald Trump’s limo.
I don’t think he ever knew I did that as he went home after dinner in another car. In twenty years I don’t think I have ever even mentioned it to his wife, so why not just blog about it, I said to myself. I mean how many people get to blog about the night they strolled into a garden amidst a sea of bees and christen the limo of a king? And so, I did.
The holidays certainly have a way of wrangling one's life into splattered mess of glitter and bows - but what a glorious mess it can be. And it was. One of the greatest gifts of my life was given to me by my parents. They did give me life once, so no surprise for it to happen again. Their gift was the FreeWheel. Imagine a sports stroller concept. That third wheel in the front and triangular base foundation is perfect for off-roaring with those lil buggers. Let's just say I now feel like a lil bugger. The FreeWheel attaches to the front foot-bar of my regular chair. In doing so, the front casters are lifted off the ground and out of the way of ground cover. It's a bit pricey, but if someone told you they could give you freedom from confinement for the cost of a family's day at Disneyland, chances are you'd take it.
One of my favorite activities in the world is camping and being out in Nature. To wake to a dozen different birds and debating with your husband as to whether the Woodpecker can really peck that hard. Inhaling smoke from cedar logs and coughing up last night's s'mores. Using a portable toilet inside your tent and feeling like the luckiest girl in the world. I did order the PeePo. Yes, this is a thing. It is a proportionally shaped "funnel" for us gals so we can tWinkle in the woods like boys. It's pink. I got it from Amazon Prime two-day shipping. It had to be good. Until I realized I couldn't stand. Or squat. So hubby ran to the Sport Chalet before we left and nabbed up the granddaddy of all porcelaine gods. The portable princess and the pee-pot.
Maine of the most devastating things about losing mobility, was the mourning process of losing the ability to be that bear in the woods. This holiday, however, I have learned that although I may need to approach the woods differently, they are no less glorious, rich, calming and awe-inspiring because I view it from my chair it's just that now that I have my attachment, I can enter those woods, roll through the leaves, race my kids on trails and leave my hub in the dust feeling only slightly guilty that he has to walk.
I don't ever blog about an ADA violation to whine. Honest. But there comes a time in a "new normal" when one's world can get turned upside down, and you realize that others just like you face nights like this every day of their lives. When seeing a Blake Shelton concert at The Hollywood Bowl for your husband's 50th birthday brings tears to your eyes - and not the good and sappy kind. Just because others simply don't understand how difficult disability can be.
A few months ago, one of my doctors suggested learning a new skill to add to my treasure chest of pain-management tools. So began my mission to oil the gears of my mental machine.
I started out by attending Stanford. Kind-of. There's this big little app called iTunes U - a massive archive of thousands of audio and video courses from universities around the world. I also attended Harvard, but I'm a West Coast girl at heart. Plus I can't stand the cold.
That's the goal. Turn down the volume.
Learning new things helped to keep my mind from my condition. I had forgotten how wonderful moments of "AHAH!" could be! I couldn't learn enough! Academic courses lead to creative ones, which led to artistic ones. Having been a working photographer prior to my accident, this fed a need I thought was lost. The desire to create.
Although I have always been a right-brained creative, I never really thought of myself as a crafty person. The scrapbooking aisle brought on an apoplectic twitch. Too many fantastic little sparkly options at once left my mind in a spin.
Painting. I'll try painting. But what to paint? Looking at a canvas gave me performance anxiety. So I started with a desk. I was in bed for a week.
Finally, it happened. A sparkle. The kind I could handle. In my quest through YouTube How-To's for something to shield my brain from pain, I came across a video on how to make a necklace. I was clasped. Not only was making jewelry fun, it was something I could share with our children. The following Saturday, my office looked like Michael's after a 6.8. Tiny crystals peeked through the ridges in the floor - everywhere. I could lay back and create a mini masterpiece. Even if it was a flop. Then I realized what my doctor was talking about. It wasn't so much about finding a new hobby, more than a new passion. I had mourned losing the ability to photograph weddings. But it was also about losing an identity.
In creating Teeny Bean Fine Jewelry, I am able to begin a new life of productivity and passion with something I love. During the making of each piece, I fall into a zone of "feeling" the life within the stones and the process. In those moments, pain and disability do not exist and all there is, is light. It is my hope that when someone wears my line, they feel the same way about life.
All items are written and copyrighted by Micaela Bensko unless otherwise noted. All images are property of Micaela Bensko. Unauthorized use is prohibited without permission.