#Cryoglobulinemia - Day 1 - Awareness Month 2017

Day 1- September is Cryoglobulinemia Awareness Month. 

This year I will try to write a short personal blog daily on living with Cryoglobulinemia. The Goal: to increase understanding, awareness, and compassion for those suffering from Cryo and the ones who love and support us.

I was 15 when symptoms of the disease began. After many sleepless nights, I was diagnosed with fibromyalgia, sinusitis, hyperglycemia and gastrointestinal issues but as I think back, it was the Florida "cold" by way of outside heat and then air conditioned buildings that really got me aching.

Horrendous symptoms prevailed and by the age of 23 my legs went black. They were almost amputated. At 26, a specific blood test revealed the diagnosis of Cryoglobulinemia. 

Years with no sleep, complicated and confusing medical issues and my failing marriage sent me on a downward spiral that caused me to fall apart by the age of 27. Some of the worst years of my life taught me much.

Against all odds, I've made it to 50 years of age. 

Ice Cream Headaches
Have you ever gotten an ice cream headache? Can you imagine having that kind of ache in your entire body for one hour?  For 24 hours?  ...What about 30+ years?

The deep pain and ache settles into your bones and every muscle fiber... you stretch, use hot packs but nothing helps.  

It's Cryoglobulinemia Awareness Month.


My name is Dr. Diane Dike. This is some of my cryo story.














Author: Diane Dike, Ph.D., founder of Second Chance with Saving Grace, Inc., an international nonprofit organization dedicated to providing hope and help to those in need.

She is the author of The Adventures of Gracie and Diane book series for children and animal lovers of all ages. All proceeds from the sale of The Adventures of Gracie and Diane book series and Gracie merchandise go to support the outreach work of Second Chance with Saving Grace, Inc., whose mission is to encourage individuals of all ages to overcome even the most daunting of life’s challenges with God’s help.

A gifted teacher, singer, mother and speaker, Diane lives in the Vail Valley of Colorado with her husband Paul, fourteen-year-old service dog Gracie and SIX adopted children and foster children as they need her.

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 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. 

Our Foster/Adoption Home Story - May is Foster Care Awareness Month!

Adoption means you grew in your mommy’s heart instead of her tummy. –Author unknown 

To be "mother" to someone who needs me means more now than ever. On February 18, 2010, my mother passed away and I realized how much I'd lost. My Father went to meet my Mother after a 15 year battle with Parkinson's disease on June 12, 2013. As I review memories one thing rings true, they loved me. 

Two days after Mom died my best friend Jan died and as I mourned, I began to think more intensely about children who are orphaned, need to be adopted or need foster care. Although I have no children of my own, I've never let that stop me from helping as many as possible. During more than twelve years as a professor and school teacher, teaching all grades and subjects to regular and special ed students which included severely disabled, blind, deaf, autistic, down syndrome, cocaine babies, severally abused, juvenile delinquents, while coaching swimming and track offered me many momentous experiences. 

Today, I continue reaching out with hope and encouragement through our book's, speaking events, singing, and leading an amazing team of international volunteers through our nonprofit, Second Chance with Saving Grace-helping hurting people and animals. I've babysat since I was eleven and earned a Ph.D. in Human Services and Counseling Psychology while growing through difficult times that included chronic illness, divorce and almost having my legs amputated. These experiences continue to motivate me to try to help as many people as possible and to have a significant and lasting relationship with children.

I spoke to Paul about my consistent desire to provide a safe place for broken children to heal through foster care and adoption, in November of 2010. Paul gave a long list of why this wasn’t a good idea. Most of the reasons were based on fear: fear that I wasn’t healthy enough; fear of the financial burden; and most significantly, fear of the lifestyle changes required to be a parent. I wasn’t deterred and did what I always do when confronted with the unknown: I prayed.

One day Paul came home and said, “Okay, go for it! I can see it will be more harmful to you not to try than any of my reasons why we shouldn’t.” He’d talked to friends and it was obvious that God had worked on his heart. He was now excited to share his love of the outdoors with hurting kids. 

We found out that there wasn't a foster home available in our county and neighboring counties so we began our certification process immediately. Since April 2011, we've been officially offering a safe place for broken hearts to heal in our home. It has been time-intensive, costly and emotion-filled. Our faith is keeping us strong, courageous and able to work through the ups and downs that family life brings. Our home is bursting with healthy family memories, working through consequences and overcoming challenges while offering hope, joy, and love. 

One day when I’m gone, my children, those I foster for a while or those we give forever homes, will know THEIR Mom loved them, and they will be sure to pass that transforming love on.

As of today, we've had over 15 foster children, we've adopted 4 and have guardianship of 2.  We've had the middle of the night children and one who came covered in blood. We are SO thankful for your help collecting items for all ages, hobbies, and backgrounds.

Thank you for keeping us in your prayers! 

Life is a roller coaster and we are riding it with arms stretched high! -Diane Dike, Ph.D.

Every child has a Love Kit, Blanket and Bear

waiting to welcome them home!

Drop off donations at the Eagle Headquarters ANYTIME. 

or Mail items/donations to: 

SCwSG/Diane Dike 

PO 673 

Eagle, CO 81631 

Our SCwSG mission is to help hurting people and animals and provide opportunities for volunteers to do the same while using their gifts and talents to live a life of impact and purpose. All with a heart to help are welcome. We offer a safe place for everyone to be a part of a family that cares and is making a difference.

Our foster/adoption Home We are a safe place for little hearts to heal! When Paul and Diane found out that there are approx. 6,800 foster children in Colorado and 550 needing adoption AND that there was not a Foster Home available in their County they immediately made plans to get re-certified, ready to open their hearts and home.   

Duties and Responsibilities  There are nearly half a million young people living in foster care in America. The goal is to return the children to their homes but when that is not possible they need long-term care and/or adoption. It's been an intense process. Duties include: parental guidance/support, face to face with CASA volunteers, social workers and guardian's, upkeep of CPR + First Aid training, daily journals, Love & Logic training, they've passed several background checks, have a bed and dresser for every child; they are prepared for: face to face time with birth parents, addressing medical and dental needs, transportation to and from activities, school, medical or therapeutic appointments, participation in treatment decisions, creating clear and consistent behavioral boundaries, providing financial, emotional and educational support, providing meals, clothing... and a stable, consistent, culturally sensitive and nurturing home environment.  Wow!

Outreach Wish List Ages we have at this time 

* Gift Cards or Monthly Donors/Mentor Buddies

* Bibles, Christian/Educational videos/books/games

* Musical Instruments

* Bike locks

*** Vehicle - (Minivan) ... so we can take care of more children.  
Help to collect used or new items is appreciated!! (This list updated 10-29-17)

SCwSG celebrates National Foster Care and Adoption Month by raising awareness of the needs of children and youth served by the foster care system. Feel free to share our Foster Care story by linking to this page from your social sites. We can all celebrate and honor foster families who open their homes and hearts to children in need while also reflecting on the resilience of the more than 2 million foster care alumni living in our country today.

Stay Strong & Courageous!

Paul, Gracie, Diane & the SCwSG Volunteer Family

Enjoy pictures on Facebook: https://www.facebook.com/DianeDike

Paul and Diane appeared on "Mystery Diagnosis" TV "The Woman Whose Legs Turned Black" Oprah's OWN and Discovery Health 

CLICK NOW to WATCH all THREE PARTS on DianeDike.org

Introduction to Diane's Second Chance with Saving Grace Outreach

Meet SCwSGs Grief and Encouragement Coach Shelley Brandon 05/02 by Dr Diane Dike | Blog Talk Radio

Click this link to hear Shelley's incredible radio interview: Meet SCwSGs Grief and Encouragement Coach Shelley Brandon 05/02 with Dr Diane Dike | Blog Talk SCwSG Radio Show

Click here to find Shelley's Blog Testimony

Why I went to Mayo Clinic in MN by Dr. Diane Dike

Paul and I asked ourselves that question several times before we left and in the 10 days we were there.

I went to the Mayo Clinic in MN because

1. My Neurologist told me he found indications of MS and optic neuropathy that can lead to blindness. He did his internship at Mayo and has been trying to get me to go for 2 years.

2. I get sick and tired of being sick and tired. So to be sure I'm NOT missing something to improve my health, treatment options or find a cure I keep trying.

3. Wanted to make some connections for our Cryoglobulinemia Vasculitis Organization (CVO).

4. I’ve been experiencing symptoms of Waldenstrom macroglobulinemia and Multiple Myeloma cancer.
5. AZ & FL These warmer clinic locations do not work with this disease for initial visits.

What was it like?

Amazing and awful!!! 

Some doctors and staff were fantastic!! Some needed to take lessons from Gracie's vets on bedside manners.

The vasculitis/rheumatologly, opthamology & colonoscopy-endoscopy staff/departments were exceptional. 

They were loving, encouraging and amazed at what we have overcome. They thought the therapy tub, the service dog (Gracie) and the wheelchair were creative ways to thwart dangerous flares. They encouraged me to keep it up and go for my dreams of helping children and learning to drive with hand controls.

However, some doctors acted ignorant saying, "What do you want me to do? You know more about this disease than any of us." When one saw my dreams for foster care he said, "Don't you think you ought to get yourself healthy before you start trying to help others?" To which I replied, "It's been 22 years. If I wait, I will not accomplish very much with my life! Helping others keeps me alive, full of hopes and dreams." He was rude and didn't understand, shrugging his shoulders. Another suggested I had enough problems? Since there is no cure for those two cancers what's the point? Finally, the very first doctor in charge of coordinating my case told Paul to be quiet. We were answering his questions and he said he couldn't listen to two people at one time. When a caretaker is in this with you they need to be heard. His words and actions were totally unacceptable to me. Another patient suffering from stroke like issues was told "maybe you just need to get off the couch." It is obvious that he doesn't belong in medical care.

They could get better and more organized. 
Why did they wait until I got there to make a plan? I'd spent 3 months getting all records to them so they could get me into all the specialist during my stay. Instead, they waited until I arrived which gave me appointments until March 23. We couldn't stay that long and had to go to all the departments and sit and wait for hours/days to see if they might be able to fit me in. That resulted in exhaustion, being there from 7am-7pm, and NOT seeing the specialist who might have had some experience with this rare blood disease and getting proper follow up tests done, ugh! Consequently, the internist in charge of our case was unable fit me in the last day to do the final review. We'll have to wait for him to send his notes and reports in the next 6-8 weeks. 

Finally, they put 4 IV's in and took them out after each procedure. Couldn't they have made a plan to get all the work done that needed IV's so I'd only get poked and bruised once? Not to mention the extra costs to us for unnecessary duplicating.

Conclusions

No answers were achieved in finding a cure, relief or help for the cryo or it's harsh symptoms. No connections to experts were made for CVO. The two forms of cancer were not completely ruled out. 

GOOD NEWS: 
*The optometrist did NOT find optic neuropathy! 
*Blood tests indicate that my vital organs are holding up well! 
*They burnt a pre-cancerous spot off my ear!

Basically, we are doing everything we can to manage this disease. At this time there is no help or new ideas to improve my situation. We will just have to stay creative and do the best that we can. It's not the life I dreamed of but it could be worse! I'm not about to let it keep me from fulfilling my God given destiny! God is sufficient and giving the strength for the battle.

I wouldn't change meeting all the incredible people, singing, hugging and praying... giving the books and babies away and connecting... At times, it seemed the waiting rooms were waiting rooms to Jesus with the stories of illness, pain, suffering and impending death but there I was in the mist of it with an opportunity to love, encourage, listen and sympathize. Keeps me holding on to scriptures like 2 Corth, 4:17, "For our light and momentary troubles are achieving an eternal glory that far outweighs them all."

Do I get down, discouraged and sometimes depressed? You betcha. I need verses like Proverbs 3:5-6, lean not on your own understanding... because I do not understand. But He says I can do all things through Him so I hold on to His word. It helps me persevere and keep the faith, hope and strength to be courageous no matter what!

I'm so thankful for Paul and Gracie and for you!! I'm ever grateful for your kindness! Thank you for caring, sharing and for your prayers! God Bless YOU!

Please visit my Facebook page to enjoy pictures taken with patients and new friends!

Stay Strong and VERY Courageous!

Always, 

Diane xxoo

Isaiah 40:31 ...but those who hope in the Lord, will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.