Saturday, May 14, 2011
There's a new website in town - to help pain sufferers who had their only means of 'quality of life' taken away from them...... For most there is no substitute. Many are upset with the government's hands reaching in taking away their only pain relief medications, for reasons that are not even close to valid.... and there are more on the chopping block of Obama's plan.
Before it's too late, pain sufferers everywhere need to unite to Bring Back Darvocet in once place. Even if you do not currently suffer chronic pain, you may one day... or you could just help your friend, or fellow man, by signing this petition. We must demand! It's our civil right.
Saturday, January 8, 2011
Among the things I’ve accomplished in my life, I will always be most proud of my daughter. Always. Recently though, I’ve done something somewhat for myself. I’ve enjoyed photography since I was a little girl, when my Godfather gave me my first camera for my First Communion. Later, I lost my favorite Minolta Film camera in our fire. I knew I’d never be able to get with the century and afford the digital camera I really wanted. I got lucky though. An electronics shop went out of business and I just happened by on one of their last days, and I was lucky enough to find a one for a real cheap song and was able to use my old Minolta lenses. Sure a few steps down from the one I wanted for 5 grand, but it’ll do. For now. I hungered for more photography.
A very close friend of mine, did purchase a camera similar to the one I was jonesing for. Her photography is impeccable. She has a fantastic and unique eye and her ideas are amazingly creative. She doesn’t use photoshop to alter anything she’s captured, and gets it right the first time. I’ve soaked it all in like a sponge, learning so much from her, but I have a long way to go till I am half of what she is.
I’ve done mostly still life types, or brief moment natural type shots, but recently was asked if I’d like to attempt something I’ve not done before. I embarked on something new and completely different. Another very close friend of mine asked if I would be interested in doing photo shoots for a charity she’s involved in. I wasn’t really sure what I was getting into, or what was expected of me and neither did the first model. I got a couple of really nice shots, but nothing meant for a bikes and babes calendar. After the second shoot I was more comfortable and had a much better idea of what we were going for. I’m not the type to condone scantily clad or nude girls hanging in some dude’s garage, but ultimately, it came to be a little more tasteful then that. It was a tough project for me, not only the learning scale of photographing these girls, or how to give them direction, but my body wasn’t really capable of something like this. After the first shoot, I was down for about 5 days. I could hardly move. The first day after, I was completely knocked out and slept all day. I learned to bring my medication with me to help manage the pain. I also learned, with my neuropathy, bone & muscle pain, and other negative effects from cancer treatments, this is not something I could do all the time. It knocks me down a few days each time.
Yet, this is still something kind of cool, that has been published in a calendar, that I am actually proud I’ve accomplished. The Children Of Fallen Riders 2011 calendar is available. The proceeds go into a fund to benefit just that, children of fallen riders. When a motorcycle goes down, we never think of the impact on the family. That person was most likely the main bread winner and it could leave the family in dire straights financially. COFR helps out where they can, be it school supplies, clothes, rent payment, or helping out with other bills. They believe every little bit helps. They also feel “The day this foundation is not important to the bikers is the day that we would be wasting our time.” If you are interested in seeing what I’ve gotten myself into and supporting a unique NFP charity, you can find the calendar here… http://www.childrenoffalle
There is also a big event on the 22nd of THIS month, where the COFR calendar girls will be there to sign your calendar and the custom bikes will be on display. Check out COFR “Chase Away Your Winter Blues” flier, ($15 per person) lots of music, including the, now 11 year old, guitar prodigy, Tallan Latz, and shocking adult entertainment. I so will be there!
Even though my mother feels it's raunchy... Here's a sample....
CLICK TO ENLARGE
Thursday, December 16, 2010
I can only imagine the infamous "group" of people that wanted it off the market, have not needed pain management for cancers, bone problems, severe back pains, even severe arthritis... or were able to be treated with other medications. For many of us, other medications do not work.
I started a new petition,
For those suffering in pain... that propoxyphene based pain killers were their only means of pain management (without stomach upsets, without herkey jerkey jitters, without jacked up dreams, without being comatose). For those that can't find a viable, not to mention cost, effective alternative.... For those that lay in bed in pain...
Please Sign this petition so we will be heard!!!
UPDATE: NEW WEBSITE DEDICATED ONLY TO BRINGING BACK DARVOCET/DARVON
Monday, July 5, 2010
Music Keeps us moving, lets you remember you’re alive. It’s the friend that is ALWAYS there for you no matter the circumstance, the friend who can help you acquire the inspiration you need at the precise moment you need it. It’s a part of me, and it’s become an important part of my girl is too.
I encourage people when they find something they truly enjoy. Anything that can inspire creativity and help promote a sense of worth… I’m all for it! My daughter has been sketching out dresses since she was little. So when our favorite “new” band started a dress designing contest… oh she was all over that! If you are so inclined, please visit http://www.halestormrocks.com/ to sign up for an account (it only take about 45 seconds & I’ve never gotten any junk mail from this) then go to http://www.halestormrocks.com/photo/classy-crasher/...And vote for Sarah’s dress “Classy Crasher” (for “Prom crashing”) by clicking the last star all the way to the right of the 5 stars. She’s been watching the numbers and ecstatic that there are people out there actually seeing her design. If you leave a comment for her, she’d be so very tickled & overjoyed! This has been a great self esteem booster!
For those of you rockers out there, you WILL love this band, and be glad you signed up.
Halestorm is a newish band, fronted by Lzzy Hale a female vocalist with a strong enthralling voice. They are a playful, good-natured yet mischievous bunch, that produce music for those that want to be put on a loud fast train to… somewhere and softer sides that hug you when you need a friend to understand.I’d be grateful if you’d help me encourage self esteem, and you’ll find a fantastic musical crew to boot!
Sunday, June 13, 2010
I’m not too sure where my head is at these days. I think I’m stuck in the clouds somewhere. I’ve been on a sort of a “living spree”, just crossing the line of irresponsibility. Not in a self destructive way, just living life doing little things. Fun things. Shelving daily responsibilities and trading them in for the spur-of-the-moment. I’ve been in control and responsible for too much too long, I’m tired. I’m enjoying being spontaneous (with restrictions of course, yet somewhat impulsive). Even little things add up. They also subtract, from the pocket book. A few realties are starting to hit and bring me out of the clouds ever so slightly. Damn. That actually didn’t last very long. I still haven’t found that new balance.
I’m in the midst of usual rounds with doctor visits, and added new ones. I’ve found that Gerd / Acid Reflux is something to not be ignored. I’ve let mine go for so long. My regular doctor never mentioned any serious consequences of AR. In fact, My doctors always told me I just have a “nervous stomach”, a little Acid Reflux. Well a little DOES go a long way… It has gotten so bad, that it has severely corroded my esophagus, vocal chords (so that’s why I can’t hit the high notes like I used to), ear canals (an excuse for the hearing loss and frequent slight ear aches), and my sinus (which have felt stuffy non stop for over a year)… My LES (the opening to the stomach from so with the severity of AR/Gerd) doesn’t close much of the time, allowing everything to ‘come back up’. While lying down, it can come up and just sit in the esophagus. NASTY. So I will be having surgery at U of C to have part of my stomach wrapped around that LES opening to help it close. Hopefully my esophagus will then have a chance to heal…. AR / Gerd is a pretty common problem, and most don’t get this severe. Sometimes there aren’t any symptoms. At least, not that you think is out of the ordinary for you...
While this is going on, I’ve had the “same old” sharp pains I had when I suspected something serious was about to happen, before cancer was confirmed. They’ve been getting more frequent. On my last visit to the oncologist, he found a new “mass” and suggested I have it check out immediately. This is where the chain on my leg starts weighing me down, begins tugging and pulling me out of the clouds where I was enjoying merriment. I begin to wonder, if this is happening all over again… What will I do? I reason in my mind, I need the put the esophagus/stomach at the highest priority. Surly more chemo will make that problem worse as it did the first time. I have an appointment Thursday at U of C and will check that mass out. Am I getting ahead of myself? Maybe. Maybe not. I’m not normally the type to freak out at every diagnosis or every little lump, bump, or minor surgeries… When I do get excited, I’m usually right. Best to start preparing.
As I write this, I realize, I’m not coming out of the clouds slightly. I think I’m on the express crash. I’m not digging reality tugging at me. It starts to remind me, that like it or not, I do still have responsibilities. Bills to pay, some kind of insurance to find, appointments to keep, trying to keep the house and everyone in it running more smoothly… It reminds me I’ve not done all the things I thought I wanted to accomplish. New things are continuously cropping up, and I start those, instead of finishing other projects I started… My writing has become sloppy. But I’m spending time with my daughter. Making memories. That’s more important to me then any other responsibility or project.
Monday, May 17, 2010
… When someone passes away, especially from cancer, my eyes glaze over as I turn inward and start questioning my own mortality. I feel horrible for the family, the wife, their kids… I start to worry about my own family…. I feel like a horrible person and riddled with guilt. I start to shed tears which quickly turn to uncontrollable sobbing.
With all the doctors appointments and surgery scheduling going on, cobra coming to an end, trying to find insurance for my family, all the things that need to be done and organized, not even attempting normal daily tasks… It’s the blade of straw that breaks the camel’s back….. ((a phone call comes in))
When someone passes away, most people say things like “what a shame”, “a huge loss”, “how terrible”, “he will be missed”, “at least he’s in a better place” or sometimes are just speechless…
Initially I feel those things as well, but my thoughts quickly take on a tone motivated by selfishness. There is a true sadness because you actually feel a kinship. It’s that damn club that no one wants to be in, rearing its ugly head, which grows larger in numbers by the day. But then the soul searching quickly ensues and questions of can I DO this? What have I wasted my time doing? What’s going to happen next? When? What’s making us all sick? I need to move, or my whole family will get sick. I begin a silent prayer for the families of the recently departed, but then I break down and launch a campaign for my own health and my own family’s well being in imploring prayer. I feel guilty and selfish, yet, I can’t stop myself.
With a friend beginning chemo, a friend just having finished, and one that is actually in the hospital right now, in and out of consciousness, losing the fight... I wish I could be Superman or Mighty Mouse and save them all, when the fact of the matter is I never know for sure if I can even save myself. When will I lose? I feel like a dreadful person for worrying about myself, in the midst of someone else’s pain.
Shock, devastation, empathy, compassion, sorrow, sometimes relief (the suffering is over), dismay, reality, dread, fear, loss of hope, feeling alone, what about my family? Maybe I should start packing now. But I’ll be too far away from my doctors. I hate to take my daughter away from her best friend… I’m getting a headache... Anxiety, shame, guilt, remorse, prayerful pleading….
These things all rush in during that split second and you feel you’ve hit a brick wall while you’re sitting there with your mouth hanging open in disbelief.
I truly thought I was ready and had come to terms with this kind of thing. I thought I was equipped with faith. I thought I was a strong, together person… but then I find out how truly unprepared I actually am… I still am taken by surprise.
… I just found out our long time family friend passed last night. His dedicated wife has been taking care of him, while also battling cancer herself. While his pain has halted, his family’s continues. I can’t stop thinking about her. Her pain, her struggle, her fear, and the kids… …Our friend, passed away after 10 pm on May 16th, 2010. The note forwarded to me from his wife, was touching and at the same time, truly heart wrenching.
I want to find a hole in a rainforest somewhere to crawl into…
I…. I’m out of words.
Sometimes I AM selfish, but I know I’m not the only warrior who admits to being this way.
Sunday, May 16, 2010
Ronnie James Dio, passed away early in the morning on May 16th, 2010. He was a true icon of my musical growth. One that was there near the beginning. One that helped push me toward heavy rock / metal… One that I share the cancer demon with… So he’s not just a part of my growth, but a piece of my transience as well.
We are sunlight
We can sparkle and shine
And our dreams are what we're made of
So just hold on
You can make it happen for you
Reach for the stars and you will fly
Hook ‘em to the heavens ♫ \m/ \m/ ♫
Thursday, December 10, 2009
(disclaimer, I am NOT “dissing” Jesus or God. Just giving my understanding of Santa vs. St. Nicholas.)
The lines are blurred at Christmas… Christmas is all Jesus. There is no doubt there.
But there IS actually a St.Nicholas Day. When my daughter began questioning “Santa”…. The below is what I told her and WHY.
Below is a piece I wrote which appeared in a book a friend of mine wrote.
Many people believe spirits can orchestrate or manipulate situations to have an outcome for us that can make us take notice or open our eyes to an opportunity we may have otherwise missed or ignored. It’s all around us. You only need to recognize it.
Is Saint Nicholas real? What about Santa Clause? Over many years these two have been blurred together. Santa Clause is an idea. Dare I say, propaganda. St. Nicholas however, was an actual person who truly performed charitable deeds and was granted sainthood. He is still in existence as spirit just as we one day will. I use the word spirit as living entity. Not merely an ideal in one’s heart.
My daughter is a kindhearted, intelligent child. When she obtained a certain age she began questioning Santa Clause. I didn’t want to be untruthful, misinform, nor did I want to damage the enchantment of this supernatural entity. There is actually a truthful balance to this mystical being. He undeniably lived on this Earth; Yet continues to be present as a spirit entity. Spirits (with the help or approval of God) can orchestrate events or a simple moment which can lead us to where we should be or assist in what we need to accomplish. I explained to her St. Nicholas was indeed authentic, and gave a brief synopsis of his selfless achievement.
A seemingly simple, yet fantastic example of spirit orchestration was one of the impossible items my daughter had on her Christmas list. A Criss Angel doll. It didn’t exist. In wanting to preserve the enchantment, I set out on a quest that lead me to Magical Dolls almost effortlessly. Hmmmmm. Magical. I found it takes months to special order one of these amazingly realistic dolls. However upon contacting the Artist “something” inspired this wonderful, personable, caring woman to not only take on the job with only 2 weeks left on the clock, but to enhance the awe for a child by sending a handwritten note from “Elf Brigitte” on the most beautifully hand sketched angelic type fairy stationary. Something lead me to Magical Dolls. Something inspired Brigitte to go out of her way, take my daughter’s impossible wish and turn it into charming reality. Something. Something I give credit to not only her kind heart, but to spirit for leading me to her. Yes Sarah, there is a St. Nicholas. He lives in the hearts of everyone who helps others. He inspires them.
My daughter continues to question me each year. Her lists are always very short, but they began innocently containing at least one item she would dream up that didn’t exist. And thus began the series of “tests”. “It doesn’t exist, but SANTA can make it. Can’t he?” That item of course would be at the top of the list.
This past Christmas List, had something on it. Something ever so simple. Simple, yet completely out of human hands… Snow. She longed for oodles of snow at home. Enough to snowmobile on. She had taken and passed her safety class which would allow her to drive one, even though we had not had enough snow in years passed, nor enough money to take a trip. There was no choice but to place that request in the hands of God and his celestial helpers. She wanted snow so badly even if it wasn’t enough to snowmobile on, she at least was hoping for a White Christmas instead of the muddy ones we’d been getting.
Miraculously, just before Christmas, we - were - dumped - on - with - snow! More then enough! Not only did she get her White Christmas, the snow stayed in tact and she was able to snowmobile… a few times! This was something money truly couldn’t buy.
A hope and a wish in one’s heart. A seemingly impossible mission, became exonerate reality. An unachievable event, materialized.
Faith, hope and dreams. Enchanted mysticism restored. Doubt erased. In her heart and in MINE.
He can help to orchestrate events… and he lives in the kind hearts of others willing to lend a hand to another.. and sometimes make the impossible, possible.
Yes Sarah, there really IS a St. Nicholas!
Tuesday, December 1, 2009
You can see the video here: http://abcnews.go.com/GMA/OnCall/husband-searches-cancer-cure-wifes-death/story?id=9212102&page=1
or you can read the below from ABC:
Did a Devoted Husband Find a Cancer Breakthrough?
After His Wife Died From Breast Cancer, Husband Turned to Cancer Research
By CLAIRE SHIPMAN
Dec. 1, 2009
Throughout his years of groundbreaking research, endocrinologist Dr. David Vesely never gave curing cancer a lot of thought.
But then it became personal.
"We started to work on cancer when my wife died of breast cancer seven years ago," Vesely said.
His wife, Clo, died in 2002, leaving Vesely and their five children behind. Vesely said he directed his sorrow into his work at the James A. Haley Hospital in Tampa, Fla., and seven years later he may have a breakthrough.
An Idea From the Heart
Vesely said it was originally his son's idea to conduct research. Brian, who was 16 when his mother died, was looking for a way to channel his grief a month after his mother's death.
In the late 1980s, Vesely, focusing on heart disease, discovered three hormones made by the heart that prevented normal heart cells from getting bigger and multiplying. He wondered if they could also control cancer cell growth.
Vesely and Brian set up an experiment and left cancer cells and heart hormones alone in a Petri dish. The cancer cells were blown apart by the body's own hormones.
"Well, the cells blew apart. So we thought, 'maybe we did something wrong,'" Vesely said. "Because you never know ... but the second time, we knew it was real."
Vesely began studying the effect on mice that had been injected with human cancer cells, by pumping the hormones under their skin.
"Usually after a month, they eliminate up to 80 percent of human pancreatic cancers growing in the mice," Vesely said.
Since then Vesely said he has eliminated other deadly forms of human cancers in mice, including 67 percent of breast cancers and 86 percent of small cell lung cancers, all with almost no side effects.
Although Vesely, 66, said he wouldn't go as far as to call it a cure for cancer, he is hopeful.
"But if it does cure one cancer in human, it will cure almost all of them, or eliminate them," Vesely said.
Human Clinical Trials to Begin
Kalos Therapeutics is raising money for the first human clinical trials for Vesely's findings. But as Vesely waits, he said he is feeling the urgency from hundreds of e-mails from people dying of cancer asking when his treatment will be ready.
"It's mostly funding. They need money to move ahead," Vesely said.
"If we can make some dent in cancer ... it will be spectacular," Vesely added.
Vesely's Finding Met With Hope and Caution
Vesely published his work, and although the medical world is intrigued, it is also cautious.
"I think that there's potentially promise here, but I think the real question is whether these very potent hormones will be tolerable at the doses required," said Dr. Mark Ratain from the University of Chicago.
Vesely said he is also cautious about raising expectations "because you don't want to get too far ahead of yourself."