Take Care of Yourself Cryoglobulinemia Awareness Series

To learn more: www.CryoglobulinemiaVasculitis.org

Lessons Learned from Living with Chronic Illness - A Cryoglobulinemia Story

"Your true self is revealed during challenges." - Dr. Diane Dike

Award-winning author and speaker Dr. Diane Dike found out she had cryoglobulinemia right before she began her doctorate degree. “I was diagnosed in my early 20's, so cryoglobulinemia vasculitis (cryo) imposed itself on my entire adult life,” she uttered. “Cryo and me are intimately shackled.”

She explores this connection through her writing, outreach work and sharing hope and encouragement during her radio shows and speaking events. “I was diagnosed with a unique and mysterious disease. I felt alone until I met others with the same confusing medical experience,” she disclosed. If endurance produces character, and character produces hope like the Bible declares in Romans 5:4 then Diane has the authority to speak on all three.

Invisible and Hyper-visible
“Cryo can be an invisible disability,” she explained. “I feel lonely, misunderstood, invisible and hyper-visible at the same time. With a dog strapped to my chest, using a wheelchair and lots of blankets and layers of clothing to endure a flare up or to prevent one a simple shopping trip can include much gawking. People are predictibly both suspicious (when they see me stand up) and amazed." 

Cryo is a mortal blood wound that is both horrible and a blessing at the same time," she exclaimed. It's hard to see how such a horrendous amount of suffering could possibly be a blessing. "It's a blessing because of the people I've met and the opportunities to grow as a human being but horrible because of the painful, lethal and relentless attacks."

Currently, Diane is working on articles that explore cryo from many angles to offer support, awareness and help to those suffering from chronic illness and pain. 

Lessons Learned
Diane learned many lessons from cryoglobulinemia. She discovered what it means to loose what she thought essential to her own identity. Bouts of harsh and confounding symptoms almost took her legs and her life. But that didn't stop her from completing her doctorate degree while teaching special education, working as a professor, doing public relations  for 7 McDonald's Restaurants, singing nightly at Cypress Garden as Angel Bell Diane and teaching swim lessons.

However, as hard as she tried to fight the attacks they finally took her down. Her seven year marriage ended when she was 26. She was forced to give up teaching because of the sheer exhaustion the disease causes and the variables she couldn't control were causing horrific flare ups and draining the life out of her. She lost everything that ever meant anything to her. Sleeping in her car and on friends couches, she sunk into a deep depression where suicide seemed the only way to find relief. "Who would care and what would it matter if tomorrow came and I wasn't there? That is the black cloud that enveloped me."

Lifted from the Pit
However, an encounter with Jesus Christ lifted her from the pits of despair to a life worth living by taking what was meant for evil and working with God to turn it for good! "It was a huge focus shift. Through christian worship music, a specific song on the radio and reading the Bible I learned to take His hand and we've been walking together ever since. 

This breakthrough didn't change my circumstances and no miraculous healing occurred where I was delivered from the daily pain but I gained a new perspective," Diane recalls. "I was able to see my tests become a testimony and a song returned to my heart." 

"I have faltered many times but I've not let go of His hand." She declared, "You really learn what you are made of when the major pieces of yourself and life are gone. You also learn who really cares. Helping hurting people and animals so they know they are not alone became my outlet for grief."

Accepting a New Normal

"My new normal became cryoglobulinemia and everything that it dictates," she explains. Physically, each year Diane is weaker and slower, she tries not to let it get her down because she is grateful. Grateful to still have her legs and her life. "No matter what new symptom blasts their way into my daily experiences I encourage myself with this mantra: this too shall pass. I can do all things through Christ who strengthens me. Nothing is impossible with God. Whether I live or die... He is with me and nothing is going to happen to me that He doesn't know about and allow. So keep trusting, keep holding on, He has a plan." 

Diane is resilient and tenacious helping hurting people and animals all over the world. "If I stop doing that then cryoglobulinemia wins. Humor and prayer keep me going strong and courageous no matter what. That doesn't mean I don't collapse in tears sometimes. However the important thing is, I get back up." 

Enduring daily pain has changed Diane forever. "Cryoglobulinemia has been a harsh teacher but it's taught many lessons I may never have learned." I've learned how to hold on to HOPE. Occasionally it feels as if I'm dangling over the abyss but I keep fighting my way back. I have two choices. Give up or stay strong. I'm going to stay strong!"

Bitter or Better

"Challenges will never end but they can be the reason we become a stronger, better person. Aristotle formulated that true happiness comes from experiences that stimulate our soul. Experiences that challenge and inspire us to grow into our  potential. 

Diane said, "Facing our pain challenges us to become our strongest, wisest and best self able to bring God great glory. We get bitter or better. I'm choosing better. Our greatest reward is not found out there somewhere but in a personal relationship with our creator who knows us better than we know ourselves." 

"It's good to turn what was meant for evil around for good. To discover through a chronic illness such as cryoglobulinemia that I'm stronger than I ever dreamed I could be. Maybe that's the greatest lesson of all. To be okay with my imperfections and learn to love and accept life and myself anyway." 

To learn more about Dr. Diane Dike and her nonprofit outreach work and inspirational books go to:
DianeDike.org

Keys to Overcoming Chronic Illness and Depression - A Cryoglobulinemia Patient Story

"Although the world is full of suffering, it's also full of overcoming it."   - Helen Keller

Dr. Diane Dike didn’t know what to do when she was diagnosed with an incurable, rare, confusing and painful blood disease called, cryoglobulinemia vasculitis. Her symptoms started when she was only 20 years old.  

After three years of sinus infections, constant flus and colds, allergy testing, and surgery Diane thought she was over the worst of it but she couldn't have been more wrong. It took three more years of doctors performing more tests, biopsies and blood work looking for lupus, rheumatoid arthritis, leukemia MS, and even HIV to explain her confounding medical problems. 

Many Complications
Diane had many complications from numbness, burning, swollen joints, slow healing sores, ulcers, sharp joint pains (that periodically caused her to be unable to walk), bloody extremities, bruising, itching, bloody noses, rashes, fevers, and night sweats. At one point, her legs turned black and they were almost amputated. Finally, they did the specific blood test that proved, Diane had cryoglobulinemia. Fast-forward 27 years, now she is putting it on the map from the valleys to the mountaintops--literally--planting flags of awareness. Helping this generation and the one to come.

Diane is a sought after speaker, singer, author, foster/adoption mom and humanitarian. "What an incredible journey I'm enduring," Diane commented. "There have been some really tough times, but with Gracie, my children, my husband, friends and lots of faith we are going beyond the limitations of disease and transforming lives. We remember all those with chronic illness who climb out of valleys of despair to summit personal mountains each day as we embark on our nonprofit outreach awareness work."

CVO
During her 22 minutes on Mystery Diagnosis, Diane was able to share some of her medical journey and bring attention to the world's first Cryoglobulinemia Vasculitis Organization (CVO). CVO's mission is to champion advocacy programs regarding the care, treatment, research, diagnosis and the use of service dogs for those suffering from cryoglobulinemia and associated conditions. 

CVO educates patients, health care professionals and the public to bring about greater awareness and to support patients, families, and those who love them. “That was a powerful moment watching the program with my friends. After the show, with tears running down their cheeks they found inspiration that helped them overcome their challenges. Bringing awareness, support and encouragement to others is like summiting Everest, and I'm thankful.”


"The Woman Whose Legs Turned Black."

In March 2010, Diane became the first person with cryoglobulinemia to successfully get it on the international map with her appearance on Discovery Health's Mystery Diagnosis TV show, "The Woman Whose Legs Turned Black." It now continues to air around the world educating millions on Oprah's OWN, YouTube and many other syndications. 

“It took me some time to process what cryoglobulinemia meant. In the beginning, I didn't handle it well. I really lost my way. But now, I feel it's an honor to be trusted with such an important task, helping people who are suffering and giving a voice to their pain,” Diane said from her home in the mountains of Colorado. “To take the hopes for a cure with me everywhere I go is a way to help others with cryo. I'm not so alone now that we've created several support groups, websites and other efforts to help those suffering with this rare disease.”

Cryoglobulinemia?
“When I first heard the diagnosis – ‘cryoglobulinemia’ -- I was scared and didn't even know what it was or how to pronounce it. The diagnosis sounded so devastatingly fatal. I thought, I can't live this way: no cure, no real treatment and I shouldn't have children? 

I married my high school sweetheart when I was 19. We put each other through school. We had big plans. This was not a part of those plans. After 6 years of suffering I couldn't see a way to go on. Losing mobility and my way of life was terrifying because I was so active.”

“I continued to work, plan to have children and live life as if nothing was different,” she says. “Trying to prove that I had the power to attempt to live the life I wanted. But cryo was a game changer and life would never be the same. I soon lost everything that mattered to me and almost died.”

Conquering Fears
Speaking out is my way of conquering fears and I consider the truth a victory over the evil terrorist - cryoglobulinemia. “I thought that if I was strong enough to rescue Gracie, train her to be the world's first Italian greyhound service dog for someone with cryo, I was strong enough to tell people I had a disease that made me wish I was dead. I couldn’t worry about what people think. I had to be authentic with the good, the bad and the ugly that I'm enduring in hopes of raising awareness and letting other suffers know they are not alone.”

While Diane helps hurting people and animals through her organizations she takes care of foster children and adopts those who want a forever home, travels as an inspirational speaker and is a positive, encouraging and educational radio host. 

To look at her on a good day you might not even know she is so ill except that you might notice the blankets, mittens and extra layers of winter clothing even in warm climates. Her big smile and care for others covers a multitude of painful symptoms that can suck the joy of living out of the best of overcomers. 

“I’m just an ordinary person who has extraordinary goals. I’ve learned there’s power and healing in doing my best. Life is too short not to give it my all. Reminding people to stay strong and courageous no matter what and that they are not alone in their pain is an important message. It helps me get out of bed in the morning and know that God has a purpose and plan even for my broken life. 

I don't hurt so much when I'm helping others because my focus is on them instead of myself, it's been a key to overcoming depression and the loss of the athletic person I once was.”

Join the Dynamic SCwSG/CVO Volunteer Team and Transform Lives!

Day 30 - CryoglobulinemiaVasculitis.Org Awareness!!

Day 30 - CryoglobulinemiaVasculitis.Org Awareness!!

Amazing! We made it!! A whole month and we've made an impact for education & awareness for our generation and the next!!! Thank you!! We will not stop until we find a cure!! 

Bonus Banner

Day 29 - CryoglobulinemiaVasculitis.Org AWARENESS!!

Day 29 - CryoglobulinemiaVasculitis.Org AWARENESS!! 

Even with all the efforts to warm me my hands and feet were still icy cold.

As we come into the COLD weather SEASON. Be sure to take PRECAUTIONS and always have your emergency kit!

Please enjoy our new music video too!

THANK YOU Barry Butler and Phyllis Barash!!!!! 

SAVING the best for our last 2 days of AWARENESS!!

Day 28 - CryoglobulinemiaVasculitis.Org Awareness!

Day 28 - CryoglobulinemiaVasculitis.Org Awareness!!!

Learn more:
CryoglobulinemiaVasculitis.Org

Thank you for caring and sharing! 

Day 27 - CryoglobulinemiaVasculitis.Org Awareness!

Day 27 - CryoglobulinemiaVasculitis.Org Awareness!

Thank you for caring and sharing!

DAY 2 - CRYOGLOBULINEMIA AWARENESS MONTH!

This banner is dedicated to my friend Matt Barrett. Moments ago he took his life.

With tears rolling down my face, I try to write this. Incredibly, I felt moved to finish this banner last night and post for todays awareness not knowing his plan.

I Love you Matt. I'm sorry the hardship, pain, loneliness and exhaustion made you want to go so badly. It's been a LONG fight for you. Rest now.

I've been afflicted with cryoglobulinemia, a chronic, painful and rare blood disease for 25+ years.

In the beginning, when I suffered for 3 years not knowing what was wrong with me and then my legs turned black and they were almost amputated, I wanted to give up. I couldn't imagine life getting any worse. But then, I went through a divorce and lost everything and everyone who meant the world to me.

I existed, just barely, sleeping in my car or on friends couches or floors until I ended up in the hospital. After, moving back in with my parents; God helped me begin to learn how to accept this daunting challenge. I've been leaning on Him every second of everyday since.

Please don't give up.
Thank you for caring and sharing!

Please enjoy Matt's Radio Show Interview. He was a BRAVE man. 

DAY 1- CRYOGLOBULINEMIA AWARENESS MONTH!

Enjoy our Cryoglobulinemia Awareness Radio Shows you can find all banners and show links on our Facebook page. 

Meet Dr. Lee Altenberg and visit his page. During his radio interview he shares his Dad's journey with Cryoglobulinemia. At one time it was the ONLY place to find helpful CRYO information. 
http://dynamics.org/cryo/Cryocrit.html



We created the Cryoglobulinemia Vasculitis Organization with Rochelle Roberts Ray. She found us through our website DianeDike.org. We were immediate kindred spirits and had so much in common. Both our mothers had Multiple Myeloma, both have passed on now. Rochelle was the first CRYO patient I'd meet in person when her family stayed with us here in COLORADO.
We worked hard with dedicated volunteers to bring you and the world the helpful and informative website.

Facebook Support Group


CVO became the world's first organization for Support, Research, Advocacy, Awareness, Education, Encouragement and HELP for CRYO patients and those who love them! 

In the beginning, I connected with the Vasculitis Foundation to let them know that according to my research CRYO was a form of vasculitis not yet listed on their website. I joined their team and it was one of their leaders that recommended me to the Mystery Diagnosis TV show that helped to put CRYOGLOBULINEMIA on the map. 
Watch the Mystery Diagnosis TV Show:

Today the journey continues with partnerships and efforts to make a difference because we are BETTER TOGETHER! 

Thank you for caring and sharing! 

ALL AWARENESS BANNERS and RADIO SHOW LINKS are posted to be SHARED as we CELEBRATE SEPTEMBER - our CRYO AWARENESS MONTH!!!!

Want to be Published?

Illustrators Needed!

Second Chance with Saving Grace is a nonprofit that helps hurting people and animals. We've been an international all volunteer team of gifted and giving people since 2007. We currently have 2 children's books in The Adventures of Gracie & Diane series that need to be illustrated. 

The first in the series was done with an artist who is no longer available. While the style does not have to be identical we are taking samples of the Gracie & Diane characters at this time to find our next winner to publish. The books are taken to children in hospitals, given to hurting people and help raise funds for animals while being sent out in Love Kits to encourage those in need all over the world. At our last hospital free story time and Love Kit giveaway a mom told us with tears in her eyes, "I haven't seen my son smile like this in months. Thank you for what you are doing, it blessed us today... more than you will ever know!"

The books are 32 pages including a bio page for illustrator and writer. We plan to print 5,000.

Join our team in promoting an inspirational message of hope and encouragement to animal lovers of all ages! 

This amazing Italian greyhound that is rescued by Diane yet she rescues Diane right back is counting on you and so are all the little children who have come to know and love her. 

Gracie is the worlds first service dog helping a woman overcome and more safely live with a rare blood disease called cryoglobulinemia vasculitis. More about the series can be found on you tube or at www.DianeDike.org

Seeking

*Your samples of previous work and character depictions of Gracie & Diane.

If chosen for this project

*We will create a timeline/plan with you to create the illustrations to fit the story line.

We look forward to discussing our goals and your dreams, asap.

Desired Skills
Illustration, Graphic Design &/or book layout and design

Please call: 

303-225-2717 or email your information/website/work samples to: Diane@SCwSG.com subject line: Book Illustrator

Please reply ASAP. 

THANK YOU.
Stay Strong & Courageous!
Diane www.DianeDike.org - Second Chance w/ Saving Grace (SCwSG), Founder
Author, Speaker, Singer, Counselor, Vasculitis & Rare Blood Disease Survivor/Warrior-Oprah's OWN Mystery Diagnosis

http://www.youtube.com/user/DianeDike

"Now glory be to God! By his mighty power at work within us, he is able to accomplish infinitely more than we would ever dare to ask or hope." -Eph. 3:20

Cryoglobulinemia Awareness Month/Day - September 23!

  

The rare disease I overcome celebrated it’s 2^nd annual awareness day, Sept. 23! I spent it LIVING with friends and family after passing my hand control driving evaluation/tests. I'm excited to keep moving forward to help more children in need by way of our Foster/Adoption program.

Cryoglobulinemia, a rare disease, is a form of vasculitis, a disease that causes inflammation in the blood vessels.  To be defined as a rare disease, there must be less than 200,000 people known to have been diagnosed.  Due to the fact it is extremely rare, there are no published statistics on the number of people with cryoglobulinemia.

In patients with cryoglobulinemia, when the blood gets below normal body temperature, it precipitates an abnormal protein that causes the blood to become jelly-like.  The thickening of the blood creates damage to the blood vessels and organs throughout the body.  This reaction can lead to complications ranging from skin rashes to organ damage/failure, amputations, strokes and even death. 

It is imperative that the affected person remain warm and avoid stressors that induce a flare up; including, but not limited to, cold temperatures, air conditioning; cold foods or drinks; standing too long; or any emotionally or physically stressful situations. It’s hard to imagine but simple things like grocery shopping, driving and not enough movement cause the blood to pool in extremities and can become deadly activities for a cryoglobulinemic.

Cryoglobulinemia is considered a hidden or an invisible illness.  The person suffering may look fine but actually have significant life-altering fatigue, pain, inflammation, digestion problems, joint aches, concentration issues and more.  The majority of the symptoms are internal; therefore the individual seems “normal” even though he or she has this severe and dangerous disease.  People with cryoglobulinemia tend to suffer in silence. 

Dr. Diane Dike is the founder and director of Second Chance with Saving Grace (SCwSG) 501c(3) nonprofit organization. She started SCwSG in 2007 with a desire to help others and make their dreams come true. She has suffered with cryoglobulinemia for 22+ years. The SCwSG team of volunteers created the worlds first support group for cryo suffers called Cryoglobulinemia Vasculitis Organization (CVO) in 2010. Learn more about this disease or join the support group on Facebook go to: www.facebook.com/groups/318304641519371/

After rescuing Gracie, an injured and homeless Italian Greyhound, Diane trained her to become the world’s first service dog of her type. Gracie helps Diane overcome and more safely live with cryoglobulinemia vasculitis. Amazing!  

Diane shares their incredible story at events, on radio and TV, in magazines, and everywhere possible to raise awareness and help/encourage those who are suffering or caretakers. She was featured on Discovery Health's and Oprah's OWN "Mystery Diagnosis" as "The Woman Whose Legs Turned Black." Her inspirational story continues to reach children, adults and animal lovers of all ages.

To learn more about SCwSG the parent of CVO outreach, to schedule an interview or to become a volunteer, please visit www.DianeDike.org or e-mail Diane at DianeDike@aol.com.