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 - Cryoglobulinemia Advocacy and Awareness

DAY 30 - Cryoglobulinemia Advocacy and Awareness

WOW! A very STRONG and COURAGEOUS Awareness month!!

Thank you Barry Butler & Phyllis Barash for your support of our 2014 CryoglobulinemiaVasculitis.Org Awareness Month!

You've really blessed our hearts with your heartfelt words and song! 

https://www.youtube.com/watch?v=Id4T5XSS8No&feature=youtu.be

Thank you for caring and sharing! :D <3 br="" nbsp="">Learn more: CryoglobulinemiaVasculitis.Org 

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!

Cryoglobulinemia: Living with Chronic Illness and Pain by Dr. Diane Dike

I don't know how this body carries on. How is it possible to hurt this much and survive?

I have cryoglobulinemia. In the first picture you see some of the things I use to make it through the night. "Pegs" and a "fibro crane" get positioned so they stick into the "hot" spots in hopes of wearing the pain out. The two blankets are what I put over my head to keep the heat in, keep my head and eyes warm and to help avoid painful headaches. I also use them for when I have migraines to block out the light.

The memory foam, adjustable bed is suppose to keep me warmer than a regular mattress. It also allows me to elevate my legs or sit up to do outreach work for SCwSG, cryoglobulinemia and our radio program.

And of course, GRACIE, my amazing, faithful friend and Italian greyhound service dog! With her help, I haven't been hospitalized overnight in 11 years. That's a miracle!

Impossible Pain
It's impossible to put the pain this disease creates into words. If I do sleep, I wake up feeling unrested, stiff with intense bone pain. I think, "This can't be good." But I push through and try to focus on my goals, all my blessings and plans for the day.

I've had fibromyalgia since I was 15. I started to have sleep problems at the same time. Did the lack of sleep bring it on? Or the pain bring the insomnia on? Was it the skiing or car accidents that triggered fibro? Who can really know. But it started and it's been relentless ever since. However, I didn't let it hold me back much when I was young.

Understanding Why?
It's hard to understand why I have to suffer so much everyday. It's a lonely, confusing and complicated situation.

If I didn't have faith, hope and lots of love for my husband, Gracie and foster children we are adopting it would be hard to see any reason to go on.

Yet, I know God has a plan in it all. And I will trust Him, even in the storms. I've learned to focus on every ounce of good and live with a grateful heart in spite of overwhelming challenges. It's been a key to happiness. In our Cryo support group we are networking to try to find better ways to deal with and overcome this dreadful disease.

Living Each Day As if it Could Be My Last
I'm very good at focusing like a gladiator, to get my daily objectives accomplished. I have to-do lists everywhere cheering me on to keep on, keeping on!

I haven't had the luxury of taking a vacation from cryo in 25+ years. Having cryo isn't something one can check off a list. If I don't reckon doing it today, that's too bad because there is no magic pill to make it go away.

Chronic Illness: Fatigued Family and Friends
Cryo is a chronic illness so friends and family get fatigued with it's ramifications and life altering impact leaving you feeling misunderstood, left behind and lonely.  But I've been there for myself, haven't I. I've attended every test, biopsy, scan, blood work up, colonoscopy, endoscopy, sigmoidoscopy and blasted medical appointment. I've tried every treatment imaginable, from the standard medical therapies, to drinking a nasty floating mushroom tonic, having acupuncture and juicing every green thing in the fridge, getting IV treatments until my veins said, "NO MORE"  and even going to Mexico for alternative treatments (coming back worse than when I left). What a spiritually, emotionally and financially exhausting expedition.

It's strange I know, but I push my own wheelchair and then sit in it to prevent a flare up or to endure one or to deal with the exhaustion the disease causes. Not to mention, I have a 9 lb. dog in a snugli close to me heart so I can more safely participate in life. You wouldn't believe the things people have said and done in ignorance. But there has been much kindness as well. It's just sometimes the mean stuff is easier to remember, if I'm not careful.

I Have Cryoglobulinemia But it Doesn't Have Me!
I have cryo but I don't want it to have me! Yet, I have to admit my life is dictated by IT. Mom just feels 'unwell'. Gracie helps her and we need to too. The kids get it and I think it helps them to be more compassionate to others with disabilities. They don't want to loose me and I don't want to go. But none of us really knows, do we?

As I write this, I am in bed as usual, full of intense bone pain and lower back, spine and neck agony.  Focused on my projects for the day. The children are off to school. I'm snuggling with Gracie, writing to you from under the warm covers, getting ready for a swim in my therapy tub, enjoying my morning smoothie (including something organic and green from the fridge), helping a friend pack up to move seeing, some friends from TN and then enjoying a family movie night this evening. It's good and I'm thankful.

I spend what little time I may have with my darling children, amazing dog, dedicated husband and you. Through sharing posts on social sites and blogging my goal is: to make sure you know that you are not alone, no matter what your struggle with.

Cuddles with Gracie and a kiss, hugs and prayer for my kids every morning is priceless. I literally know how blessed I am to urge them in the morning to hurry for school, eat their veggies, blow their noses and brush their teeth. We welcome all children who want to be here, want a family and need our love. I never know who God will send us through the social workers and our agency to be a part of our foster home and our forever home. But we are ready to envelope them into our lives.

None of Us Get Out of This Life Alive
One cold morning my bed will be empty. There will be no Rise and Shine song sung to wake my children for breakfast. My son will need someone to tell him he "saved the day and he can do all things through Christ who strengthens him." My daughter will need a Moma to giggle and share all her secret girl stuff with. Paul will be released from his years of caregiving and not have to worry anymore.  And Gracie... "Gracie will we go together? Or will you be left behind and lost without the job God created you to do? I have to believe He will work it out just right."  And, YOU will look for my silly, informative awareness banners, animal rescue posts or fun uplifting videos that make you laugh and cry. But there won't be any.

For Now I'm Going to LIVE!
Cryo has been a game changer. I never thought I'd make it out of my 20's but here I am coming up on my 50's. Wow. Still I think of things like wanting to see my children grow up, get married and have children. Becoming a grandma - old and silly with Paul...  One thing I do know: Is for now I'm going to LIVE!

When the time does come, I'm going to go out sliding over home-plate giving it all I've got! I'll jump the hurtles, push through the pain and cheer on every warrior next to me. 

Always a Gift
The gift in cryo is to to learn to live each moment as IF it could be your last. Take nothing for granted. Being ready to die has helped me learn to LIVE!  And ..."we know that suffering produces perseverance; perseverance, character; and character, hope.  And hope does not disappoint, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us."

So for now, let's take life in both hands, grab it, shake it and make every moment count. Adore our kids. Smile and wave at people we don't know, just because we can. BREATHE! Embrace those we love and if they will not embrace back, find someone who will. I did and it's changed everything! 

Don't be afraid or settle for less. Do what you love to do and bring God glory!

Surround yourself with beautiful things and people - look for the rainbow and remember it. Rescue a dog! Dance, laugh and eat yummy food. Don't hold back. Choose wisely what you spend your time on. Once you've spent it you can't get it back. I've never seen 'I wish I'd worked more' on a headstone or a hearse with a U-Haul. 

Thank You
Before it's too late, I hope you know I've treasured and appreciated EVERY kind and encouraging word or glance, every song we've sung, every generous gift, volunteer effort, warm and gentle hug, and moment we've spent together...  I would love to still be with you, laughing, crying, eating weird miracle foods, and sharing a fantastic guest with you through our radio program ...    You became my family and I can't get enough of you. 
I've done the best I could with what I had to work with. I tried to never hurt anyone but to always help everyone. If I should be gone tomorrow just know, I will be in the thick of it in Heaven - a busy-body - making to-do lists, helping everyone, cuddling with the animals, enjoying naps and thankful not to hurt anymore. I'll waiting for you.

Thank you. God Bless.

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!!!!