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Thursday, May 11, 2017

Erin's Day for ALS Awareness

Four months today. You're everywhere. In the eyes of your kids, in the hearts of your family and friends, and certainly in the eyes of your granddaughter. I wish I were an old hag writing this at the end of my life about a friend who'd already lived a long and full life. Instead, I'll be celebrating my next milestone birthday without your physical presence. And the one after that.

You were supposed to be one of my bridesmaids, if I ever got married. I might have been your maid of honor, had you made it until summer well enough to marry the man you loved. Since your diagnosis, we were all prepared to band together and take one more road trip - your last ride, as it were. You were all for it, but looking back I think you knew it wouldn't happen. I would have wanted to know what you knew but still... thank you for sparing me. I know why you kept so tight-lipped about the severity of the situation.

I said I'd honor your memory, and I meant it - I've been thinking about this blog post for days now.
Erin, in one of her hand-knitted sweaters. So truly talented!
How can I continue to bring to light the awful nature of the bastard disorder that took you from me, from us all? I struggled to figure out where I'd go with this one, as I usually do when I sit down to write. Then I read an article through a link posted by a wonderful guy who has been fighting ALS successfully for quite sometime. A new drug was approved for treatment - the first in twenty years, it said. Then I thought back to the links we sent each other when we were waiting for the goddamn doctors to diagnose you -- I thought for sure it was a trial we had discussed. Whether it was or wasn't doesn't matter. What matters is a new drug was approved. This is incredible news for those who are here, and I know that. But again, I was seized by a selfish human moment.

Filled with anger and sadness, I cried all the way home. I stayed the fuck off Facebook, because I couldn't deal with anything else. In the moment, it wasn't fair. Had the drug been approved sooner (because who knows how long it took -- what was it you'd said? They're quick to stuff us with man-made preservatives and additives that'll rot us from the inside out, but they can't see their way to give us a cure for anything.), would you have made it? Would we have gotten to keep you for weeks more? Months more? Years more?

I'm having a real problem, even now, understanding the ways of the world and why things happen the way they do. I struggle to stay present, to push forward. I miss you. Our crew - the Snack Pack? - isn't balanced without you in this world. We feel you and we feel your absence at the same time. It's surreal. And just when I think I can't cry anymore, the tears come. And yet, because I know it's what you'd want, I will keep fighting the good fight.

The Link: http://www.cbsnews.com/news/new-als-drug-approved-for-lou-gehrigs-disease-radicava/

A new drug, Radicava, became the first drug in 20+ years to be approved for the treatment of ALS. I feel like, despite the victory, we should all be concerned that this amazing new treatment will cost $145,524 a year, according to the manufacturer. I wonder if such an organization exists that helps those suffering with funds to cover the cost of treatment, or at least to aid in paying household bills. It's not a cure, but an effective treatment used to prolong the lives of those fighting.

Readers: A new treatment is great, but there is still no cure. If you are so inclined, please donate to the ALS Foundation to help further research. Visit ALS.ORG for more information.

I love you, Ren. 1977-2017




Monday, April 10, 2017

Erin's Day for ALS Awareness - Fighting ALS is a Full-Time Job


for further information or to donate to the research that can help locate treatments and, someday, a cure for Amyotrophic Lateral Sclerosis (ALS), please visit als.org -- and please continue past the end of the article for a brief memory of my soulmate Erin, the amazing woman to whom this post and future posts like these are dedicated.

The ALS Association: Fighting ALS is a Full-Time Job

Make your donation at ALS.org
The ALS Association symbolizes the hopes of people everywhere that Amyotrophic Lateral Sclerosis will one day be a disease of the past - relegated to historical status, studied in medical textbooks, conquered by the dedication of thousands who have worked ceaselessly to understand and eradicate this perplexing killer. 

Until that day comes, The ALS Association relentlessly pursues its mission to help people living with ALS and to leave no stone unturned in search for the cure of the progressive neurodegenerative disease that took the life and name of Baseball Legend Lou Gehrig.

As the only not-for-profit voluntary health agency dedicated solely to the fight against ALS, we direct the largest privately-funded research enterprise engaged to uncover the mystery of a disease that affects as many as 30,000 annually. With more than 5,600 people diagnosed each year - an average of 15 new cases each day - our mission is urgent. The search for answers knows no bounds. 

The ALS Association's far-reaching efforts extend to Capitol Hill and some of the world's finest research laboratories. To date The ALS Association has supported over $80 million in ALS research. We've brought the ALS community the historic Medicare waiver of the 24-month waiting period and a 100% increase in funding since our advocacy campaign began. 

But nowhere does this battle reach deepest than in our work with ALS patients and their families. We embrace thousands of those stricken with the disease with the world's most comprehensive program of care and services. Our nation-wide network of chapters coordinates services with care and compassion - making a difference in the lives of people with Lou Gehrig's disease. Our hallmark of quality is exemplified in centers and clinics that deliver advanced care and meet The ALS Association's rigorous criteria for certification.
Our accomplishments are made possible by the generosity of others. From the smallest donation to the largest gift, donors touch the ALS community with hope for the future. This terrible disease knows no racial, ethnic or socioeconomic boundaries. It can strike anyone at any time. 

Despite the mysterious nature of ALS, breathtaking advances in science, medicine and technology are shaping a future of unparalleled hope for those with ALS. The ALS Association is at the forefront in this new world, encouraging young scientists to combine new thinking with these advances to unlock the mysteries of ALS - to push the envelope in therapy and scientific research. 

The ALS Association is waging the war against this killer 24/7. Every 90 minutes, an American dies of ALS. Time isn't on the side of those afflicted. Fighting ALS is a full-time job. 
  
The following article can be found in its entirety at http://als.org/index.php?page=about_us


     
We were #squadgoals before Taylor Swift claimed it - we rolled together strong, we uplifted one another and, whenever one of us was in crisis, we'd walk from anywhere to be wherever the other needed us. We embraced the darkness together, we embraced the light together, and we laughed and loved everything in between. We gathered around beer, music, projects (shared or solo)... but mostly food. (smile) So, we called ourselves the Snack Pack. And wherever we were together, we were the center of attention. We made everyone around us part of our crew, and we loved to make everyone around us laugh and smile. The three of us that remain vow to keep Erin's light shining, and to keep spreading the love we used to when we were a quartet of magical sisters. 

Long Live the Snack Pack.


Friday, March 10, 2017

ALS Stole My Best Friend


Two months ago today, my soul sister Erin lost a brief, but hard fought battle with ALS - it came in, robbed her of her vitality and then robbed the rest of us of the incredible privilege of having her in our lives. A day hasn't gone by where I haven't thought of her, and wondered what I can do to keep her amazing light shining. To know Erin was to be in the presence of love, and I need to share some of her light in order for you to understand the impact that her passing has had on me and (legitimately) hundreds of others. 

Erin aka Saphire, 9/4/77 - 1/11/17

Erin (also known as Saphire) was an active member of the Universal Zulu Nation (crowned Queen, on the Council of Elders, and a curator of all of the Nation's vast stores of knowledge), and had been since the mid-90's. She worked tirelessly for the nation to disprove the 'gang' label that had wrongfully been placed on them since their inception in the 70's. She operated with love, and understanding - she was a Queen in all rights, always displaying the most open heart, the most open mind, and the most beautiful soul. She inspired everyone she met to be better version of themselves and, as a result, people everywhere loved her. In fact, during her final days, members of the Universal Zulu Nation were actively driving across country and traveling across the ocean to have the opportunity to say one last goodbye to their Queen. And when she left us, there was barely a space to breathe in the funeral home - it seemed the entire world came to pay their respects. And that's how I knew it would be: a fabulous farewell fit for a dignitary, a glorious outpouring of love for a woman whom I considered an inspiration and a living angel. Erin was love. Erin was light. And she always will be. 

Me and Erin, 1992-ish.
Growing up, she knew this was a possibility. We'd spend hours talking about anything and everything, some of which included her fear that she'd end up developing ALS the way that her biological mother had. I can remember her saying that if she made it to 30, she'd feel like she could count herself safe - and on her 30th birthday, we privately breathed a sigh of relief. But life had different plans. It was just over a year ago that her voice began to slur, she began to lose weight, and she couldn't keep food down. She retreated within herself and didn't say much to anyone, despite the fact that the signs had begun to pile up. She was always the woman who preferred to take care of everyone else and never wanted folks to make a fuss over her. So she began to make peace with the world around her, packing in as much life as she could while she awaited the inevitable diagnosis as quietly as she could (so that she wouldn't have to send anyone into a panic). And while ALS ultimately claimed her roughly four months after her 39th birthday, I'm happy to say that she got to take the long road trip she wanted, and she got to, above all, hold her first grandchild. 

There's so much I wanted to experience with her, with all of my soul sisters. And to hell with it, I'll be honest - I was clueless about her suffering toward the end. Going about my life 1600 miles away after moving to Texas, I had no idea how bad it was. Whenever I asked for more detail, she never gave it to me. She only let me know she was fighting, trying to get through it. I can remember my heart cracking straight down the middle when I asked her sometime
l to r: Me, Krystal, Lo, Erin - aka 'The Snack Pack'.
in December how she was, and she simply responded, "I'm tired" - it speaks volumes to me now, in hindsight. All I could do was remain steadfast in my support, even though I was far away; all I could do was send words of encouragement, and try to keep as much hope in her heart as possible. 


It wasn't until her final return to the hospital in December that I realized she was actually dying; that it wasn't coming eventually, it was coming for her immediately. I'm thankful for things like Facebook Video Chat - her fiance gladly held his phone to her face while I sat on the other side with tears in my eyes. She looked me in the face and I told her I loved her. I have to believe she heard me. I prayed daily for her; the last text I sent her before she slipped into a state of unconsciousness was to ask, when she got out of the hospital and was in better health, if she'd like to take a nice long road trip with our sisters Krystal and Lorraine - our last big trip together had been in 2008. She answered that she'd love it. The thing is, I had no idea. None. I believed she'd get better. At least well enough to handle the road trip, as long as we were prepared to care for her (and we would have been). And thinking about it now, she knew - I'm wondering whose sense of hope she'd been stoking when she answered, hers or mine. Maybe it was both. 

A tribute created by a member of the Universal Zulu Nation.
On January 11th, I sat straight up in bed at 7am - I gasped for air, my heart racing. Blindly, I reached for my phone. The message was already there - one of my best girls, one of my soulmates, one of my true sisters, was gone. The world had already been thick and scary - it was a lingering feeling of pending doom that had been hanging in the air for a month or so since she had first gotten really sick. I wasn't sleeping, I wasn't dealing with people well, I couldn't focus, I couldn't write. And when she breathed her last, it didn't get better. The days after leading to her funeral and burial were surreal. I couldn't handle that she was gone, that I'd never see her face again - at least, not in this lifetime. It's odd to feel such a painful sense of loss while not feeling like I'd never see her again. Call me crazy, but I know she's one of my soulmates. I've been blessed to have found them all - and I walk every life with them. I know I'll see her again, but right now I'm being human and selfish: I want my sister here. And since then, I've been chaotic, for lack of a better word. How do I deal with this? How do I honor my best friend? How do I honor the memory of the girl who, in high school, stood at my back when I was about to be jumped by three girls with no questions asked? How do I keep this amazing, selfless, loving, truly beautiful woman's light shining? And all I can think is to start with awareness of the disease that claimed her life. 

ALS - Amyotrophic Lateral Sclerosis, also known Lou Gehrig's Disease - is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. (ALS.org)

There are actually 3 forms of ALS, described as follows on the ALS Association's Website:
1. Sporadic - this is the most common form of the disease in the US - 90 to 95% of all cases are diagnosed as a sporadic form of ALS. 
2. Familial - this form of ALS occurs more than once in a family lineage and accounts for only 5-10% of all cases. This was most certainly the form that afflicted Erin. A member of her family told me recently that every woman on her mother's side of the family lost their lives to the disease.  
3. Guamanian - an extremely high incidence of ALS was observed in Guam and the Trust Territories of the Pacific in the 1950's.


ALS - Facts You Should Know
According to ALS.org, early symptoms are so slight that they are frequently overlooked. Depending on their appearance and how progressed the illness actually is, the course of ALS may include: 
  • muscle weakness in the hands, arms, legs, or difficulty swallowing, speaking, or breathing. 
  • muscle twitches and cramps, especially in the hands and feet, arms or legs
  • "thick speech" and difficulty projecting the voice
  • in more advanced stages, shortness of breath, difficulty in breathing and swallowing.

Diagnosis is important in prolonging the life of someone with ALS, and following treatment 100% to the letter is also crucial. However, the disease itself is so sneaky and rarely diagnosed in time, that it's often too late to treat successfully to add more than a few months onto a person's life. It is very difficult to diagnose, and frequently what a doctor does (at their own discretion) is rule out diseases whose symptoms are similar before they arrive at the diagnosis of ALS. Testing includes electrodiagnostics (electomyography and/or nerve conduction velocity), spinal tap, x-ray/MRI, myelogram of the spine, and blood/urine studies. At this time, though the ALS Association is working diligently to learn more about this disease and how to stop it, there is no cure and the disease will eventually lead to death. 

Just as awareness of any disease is crucial to developing new methods to diagnose, treat, and ultimately prevent or cure, so is awareness of this debilitating condition. ALS Awareness month is in May, and has been for the last 24 years. During that month, the ALS Association sponsors the Nation ALS Advocacy Day and Public Policy Conference, leading a delegation of people with ALS, their caregivers and other advocates to Capitol Hill to urge legislators to support measures to help find treatments and a cure.

The ALS Awareness Challenge began in 2013 with Pete Frates and Pat Quinn, both diagnosed with the disease in 2012 and 2013, respectively. It involved challenging friends to either dump a bucket of ice water over your head, or donate to the ALS Association within 24 hours of the challenge. The challenge spread far and wide, and eventually celebrities got involved, divulging in the comedy of dumping a bucket of ice over their heads while still donating to the organization. 


Please donate! Click here.
So, please - I beg. If you can donate, do so. I invite you to learn about ALS and post links to your blogs or Facebook pages encouraging others to do the same. This is a rough world we live in, and the hope is that the ALS Association can continue their work to successfully find ways to deal with this life-stealing disease. And maybe, just maybe, convincing others to care about this will cause a domino effect, and they'll start caring about everything else too. Dare to dream? Maybe, but - like Erin did, and frequently sought out - I believe that there is good in us all. And a tidal wave of hope and love can often happen out of nowhere. 

For now, I continue my struggle to find ways to make Erin proud and to make sure her memory lives on. She deserves immortality - she's earned it. I feel and see her presence every day - in music, in the outdoors, in movies and books, and on the faces of her children (my Godbabies). But I want her here, so badly. All I can do today is say out loud, "I love you, Erin. And I won't let you down."

Monday, January 11, 2016

COVER REVEAL: What The Bachelor Gets by Kristina Knight

Cover  Reveal: What The Bachelor Gets by Kristina Knight

I really love doing these posts. I have so many talented pals who write the most amazing material that I feel like I'm constantly celebrating book releases and cover reveals. This post is no exception: Kristina Knight has a new book dropping on February 8th, and the cover is pretty much sexy af. And yes, that is a legitimate, professional descriptor. (smile)

Be sure to read through the blurb and, if you like what you read, pay Kristina Knight a visit and get the deets on where to pick up her latest read!






Vegas Nightly just named local property developer Gage Reeves its Sexiest Bachelor, not a title he likes, especially when it brings showgirls, local socialites and entertainers to his doorstep 24/7.

Callie Holliday has a plan: make her day spa the hottest ticket in Vegas. The problem? She's saddled with a bad location and a zero account balance. A chance meeting with childhood friend Gage Reeves offers one solution: setting up shop at his new development.

Gage's ordered life twists out of control when he begins to fall for his childhood friend because Callie is determined to keep things business like. She doesn't like to depend on people, but Gage makes it hard to remember exactly why…








And here's a special sneak peek at What The Bachelor Gets:

Callie unlocked the front door but didn’t move to go inside. Instead, she stood beside him as if waiting. Their bodies didn’t touch, but he could feel a slight hum that seemed to connect him to her.
            “Good night, Gage.”
            “Good night, Cal.”
            This time she moved, toward him. Gage stepped forward, too, and leaned in to press his lips to hers. She was soft, her full lips steady beneath his, and she tasted like the Corona and lime she’d been drinking. Gage slipped his hands to her neck to play his thumbs against the sensitive skin beneath her jaw, and Callie stepped forward again, this time bringing her body in full contact with his. His dick jumped in his jeans.
            Her hands pressed against his chest and then pushed up around his neck. Callie slanted her head and opened her mouth to him. Gage pushed her against the doorframe, insinuating his leg between hers as he took the kiss deeper.
            She drew him in, deep into the depths of her, and Gage didn’t care if they kissed like this for the rest of the night. He wanted to be near her. Wanted to feel her against him. Wanted to go on tasting her until he was positive he’d never forget any of it.
            Finally, he broke the kiss, panting, his lips millimeters from hers.
            Callie swallowed, and he watched the muscles in her throat slide down and then up slowly. She blew out a breath.
            “Good night, Gage?” It was a question, and he didn’t want to answer it.
            “Good night, Cal,” he said. “I’ll call you tomorrow.”
            Before he could talk himself into her condo, Gage returned to the truck. He sat in the cab for a long moment, watching until Callie went inside and closed the door. Then he looked at his jeans and said, “Cold shower, buddy, ice-cold shower.”

No Buy Links yet, But...

Visit Goodreads and add What The Bachelor Gets to your 'Want To Read' shelf!