Coping with Cryoglobulinemia Vasculitis Flare Ups, Dr. Diane Dike

Coping with Cryoglobulinemia Flare-ups 

                                                    by Dr. Diane Dike

Have you ever run a marathon?

I use to be a runner. I did biathlons and triathlons. As runner, biker, hiker, skier, swimmer, hang glider, coach... I planned to be active all my life. But when cryoglobulinemia began terrorizing me 25 years ago, the life I knew slipped away. 

Now I feel that same soreness I use to feel from exercise for the simplest things like getting out of bed, taking a shower, walking or other activities that a 47 year old woman shouldn't need to lay down to catch her breath about. Don't get me wrong. I'm thankful to still be alive. 

Cryoglobulinemia (kri-oh-glob-u-lih-NE-me-uh) is a rare blood disease that develops when the presence of high levels of abnormal proteins, called cryoglobulins, are found in the blood. The name literally means “cold antibody in the blood”. 

In stress and cold temperatures, these protein antibodies precipitate clumping together forming a thick, gel-like glob which blocks blood vessels, potentially causing a wide range of complications. There are three types of cryoglobulinemia, based on the type of abnormal protein found in the blood.

Cryoglobulinemics have flare-ups. What are flare-ups and what can be done about them? A flare-up is a period when symptoms are more intense. An occasion where pain, swelling, discoloration, itching, burning, tingling, nausea, abdominal pain, hemorrhoids, headaches and a feeling of un-wellness intensifies. 

Many patients with cryoglobulinemia experience flare ups which can lead to depression, irritability, weakness, bloody or black extremities, amputation, gangrene, days of non refreshing sleep, exhaustion and death. 

Sometimes cryo patients can identify what triggers  a flare-up and can then lessen symptoms. At times, a patient can do everything just right and still have painful flare ups. For me flare ups were intensified during my menstrual cycle, so in my early thirties I had a full hysterectomy. It helped.

What causes flare-ups?

1. Eating cold foods.
2. Exposure to cold in the form of drafts, air conditioners, fans, or any temperature fluctuations causing a disruption in homeostasis.
3. Processed, packaged and sugary foods that lower or stress the immune system or cause constipation or IBS can possibly contribute.
4. A stressful day or event.
5. Overexertion, too much activity even positive events.
6. Poor sleep.
7. Standing too long or sitting with your feet dangling. Wearing pantyhose.
8. Chemical sensitivities, food allergies, nutritional deficiencies, heavy metal or mold exposure can also possibly contribute because it causes stress on the body. Generally, it's an issue with dropping temperatures but many patients have even noticed a flare up upon catching a flu, cold or a flare up of other overlapping medical conditions. 

How can you recuperate from a flare-up?

a. Soak in a hot tub or take a warm bath for at least 20 minutes with dead sea salts or Epsom salts. Along with lavender and other essential oils could be helpful.
b. Use coconut oil to sooth skin after and get into a warm bed with lots of blankets to rest (read a favorite book, watch a relaxing movie, listen to soothing music, snuggling with your warm dog).
c. Try different natural products to see what works best for you: A healthy smoothie, acai juice, a cup of relaxing tea, a piece of dark chocolate, magnesium, vitamin D, MSM, healthy fats, and cannabis has many medicinal qualities that can calm an overactive immune system. 

Hopefully you'll sleep better after any of the above because sleep is SO important.

d. A specifically trained service dog can save your life, alert you to trouble before you have a life-threatening problem, help you participate in life more safely, retrieve things for you when you are unable to, provide you emotional comfort, they can be trained to stay on your person creating life-saving and consistent heat, and support and help you do what you couldn't have done.

Remember to take care of yourself. Listen to your body when it is telling you something. Usually the flare-ups will calm down quicker and clear up faster if you take precautions and act quickly. 

Always bring an emergency kit. It should include the above listed items along with a sleeping bag, microwave able hot packs, and an identification card listing your conditions along with the direction NOT to apply anything COLD in the case you should black out and be unable to express yourself. Also include an emergency phone number for a loved one who understands your condition.

Stay connected with a support group that understands your rare condition and challenges. One that you can bounce questions around for ideas, strategies and to just simply remember you are not alone! 

No matter your health challenge, don't give up! Everyone needs encouragement from time to time because we feel discouraged or feel like no one cares, needs or wants us anymore. This disease causes us to feel so broken, misunderstood, confused, and we feel our life is slipping away but I'm here to tell you that your brokenness can become the place where your mess becomes your message and your test your testimony! 

It's never too late if you don't give up! You have more to offer than you know especially while you persevere through the tough days not only surviving but thriving. You can overcome your challenges to live a life of impact, purpose and victory!

Facebook support group for cryoglobulinemics, those who love them or want to learn more.

Tissue from the kidneys and skin should be examined for ultra structural abnormalities. Skin biopsy is less invasive than renal biopsy and should be performed first. Kidney biopsy most often provides the diagnosis if it is not established by skin biopsy. Pictured is an electron micrograph of a kidney biopsy specimen from a patient with cryoglobulinemia. The kidneys filter wastes and extra fluid from the blood and direct them to the bladder as urine. Cryo patients often have:

• hematuria, which is blood in the urine

• proteinuria, which is excessive protein in the urine

• impaired kidney function, which causes excessive waste products in the blood

Common symptoms of cryoglobulinemia include fatigue, muscle pain, joint pain, difficulty breathing, skin ulceration and death of large patches of skin cells. These symptoms are quite general and can develop regardless of the specific organ or organs involved. Kidney disease and liver disease are relatively common consequences. 

These organs are the most likely to be affected by levels of blood cryoglobulins because they are the bodies filtering system. PREVENTION is key to not only surviving this complicated, confusing and overwhelming disease. According to most research available more than 90% of cryo cases are associated with Hepatitis C infections. Hepatitis C is acquired by tainted blood products, injection drug use (needle sharing), and possibly sexual transmission. Treatment of the underlying hepatitis may be put cryo into remission. 

I do not have Hepatitis C. I have the orphan cryo. Doctors have no idea why I have it but watch for some type of cancer that is possibly "hibernating" until it decides to appear. My mother died from Multiple Myeloma (a rare blood cancer) which is closely associated with cryo.

Stay Strong and Courageous! 
Diane 

Learn more

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

American Missionary Journey

Paul, Gracie & Diane in a town near you!

With an extraordinary faith, hope, and love this amazing team touches hearts around the globe. Their inspiring story books, Love Kits of Hope and Encouragement, autobiography, God made Only One of Me and incredible outreach work to orphanages, hospitals, nursing homes, prisons, schools, churches, ~wherever they are invited~transforms lives. A happy reader wrote, "I came home to your package on my doorstep. I was going to go out but picked up your book and am now on page 106, laughing and enjoying yours and Paul's love story with tears in my eyes. What a blessing..."-Greg A guest at one of their events exclaims: "Don't miss the opportunity to meet this amazing team. You will never be the same!"-Tina

TRAVEL SCHEDULE
They plan to leave Colorado heading west & pick-up 191 thru Utah & Arizona.
Then I-10 thru New Mexico into Texas & continue on I-10 thru Louisiana, Mississippi, Alabama & Finally into Florida then picking up I-75. They will need to arrive into Tampa, Florida for an event by Dec. 17-18.

It's easy to schedule their amazing testimony, disability educational presentation or marriage enrichment message at your Church, College, School or other important venue call: 303-225-2717 or visit the web site: http://www.DianeDike.org They are looking forward to meeting you, serving & allowing God to use them for His Glory!

Your Second Chance with Saving Grace Volunteer Team!
http://www.DianeDike.org Call TODAY! 303-225-2717
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Embracing Brokenness

By Diane Dike, Ph.D. - award-winning speaker, singer, author

My body went numb as I collapsed into the chair. The doctor’s mouth moved, but I heard nothing. He stammered, “Are you alright?” I had no answer.

Pain became my constant companion at the age of twenty-three. I had no idea what "Cryoglobulinemia" meant or even how to pronounce it. The words, "incurable, life threatening, chronic" overwhelmed me. The way I looked at the world and my purpose for living changed in an instant.

Prior to the mysterious diagnosis, at 19 I married my high school sweetheart, became a special needs teacher, church youth leader and coached swimming and track. We realized personal and professional dreams, while making a difference in young people’s lives, even as I sang for thousands at a popular theme park. We had big goals and plans.

One terrible Friday in 1990, a severe pain stabbed my left hip. Later my left foot began to ache with two red spots on the arch. Sunday I stepped out of bed and fell to the floor. While crawling for help I noticed that my left foot had doubled in size and was hot to the touch. My husband rushed me to the emergency room where I was prescribed painkillers, crutches, rest and ice. I would later discover that icing was the worst possible treatment and the painkillers only aggravated symptoms.

Each week a new body part became swollen and covered in hives, rashes, or red/hot spots. Poked and prodded by specialists and admitted to hospitals every few weeks, they tested for lupus, leukemia, rheumatoid arthritis and AIDS... Concerned about the possibility of gangrene, two doctors contemplated amputation of my peculiar legs.

When the attacks came on with sudden vengeance, all I could do was helplessly watch my body deteriorate. Flu-like symptoms made working, socializing, shopping, and performing the simplest of daily chores excruciating. In addition, insomnia and the gnawing pain of fibromyalgia that began when I was 15 became more intense. Deep sorrow, weeping and anguish ripped all hope from my being. I cried out, “God, help me!” As if I was dragging around a thousand pound ball of shame, no matter how hard I tried to kick it away, it shackled me and plunged my life into ruin.

On Tuesday, May 11, 1993, the University of South Florida hosted a conference for the world’s leading physicians in the field of rare and difficult to diagnose diseases. Invited to participate, I was told to keep a journal of my symptoms. One doctor after another examined my body and studied my file. My symptoms got worse right before their eyes, and in the end, the group ordered a specialized blood test. I was sent home to wait for the results, again.

Almost three years after those two red spots first appeared on my foot, the doctors concluded that I suffered from a rare, incurable blood disease called CRYOGLOBULINEMIA, cryo-cold, globul-clotting, anemia-blood. It’s an excruciating autoimmune blood clotting disorder that destroys vital organs and gets worse when I’m stressed, sitting with my feet dangling down or my body gets cold. They also confirmed vasculitis (the hurting disease), purpura and Raynaud’s Phenomenon with Chronic Fatigue Syndrome and the list grows on. I was told to minimize all exposure to the cold and avoid ANYTHING that inflames the potentially life-threatening symptoms.

Even though I felt relief over finally getting a diagnosis, I detached because a fulfilling life now seemed impossible. I sunk into a deep depression and lost everything that mattered. My divorce and subsequent homelessness led to suicide attempts and confinement in a psychiatric hospital. I could only see these diseases as a source of never ending agony. I didn’t know how to accept or ask for help. I prayed for death to come quickly and I didn’t care how, “Just make this pain end.”

In complete despair, God answered me by directing my focus from my misery to Jesus and His promises for my life. The Bible taught me that peace, protection, good health, wholeness, and provision could be mine despite the storm that surrounded me. One day I made the choice to leave behind old behaviors, thoughts, and labels. Embracing my second chance at God’s saving grace and the opportunity to live my life well, in spite of my dire health problems.

Prayer and Bible reading led me to find refuge from my worldly distress and incredible changes occurred. The truth of God’s Word sank in, and whenever I felt fear, I starved it with faith. The song of my heart returned and helped to combat the battlefield in my mind. One song especially ministered to me: “Take My Hand and Walk,” by Jean Luc Lajoie. With this encouragement, I dispelled the devil’s claims that I was, “Alone, unlovable, deserved to be sick, God was made at me and the world would be better off without me...” During this profound time with God, my hope was restored and old dreams were replaced by new ones. Embracing brokenness, I saw my life as God saw it—worthy to be lived.

God helped me survive the darkness so I can be a light to help others find their way. He likes to breath life through the most unlikely of candidates. Whereas my brokenness once dragged me into the pit, it now lifts me up into the open arms of a loving God who has an important purpose and plan for each life. The disease hasn't left yet, but sometimes wellness doesn’t mean the absence of sickness. By letting my mess become my message and my tests become my testimony, day by day, I’m an overcomer!

Five years ago I rescued a broken dog, and she rescued me back by becoming the world's first rescued Italian Greyhound Service Dog helping a woman with an incurable blood disease. She has many tasks that help me more safely participate in life. Together we go where no woman and dog have gone before. We visit prisons, schools, orphanages, hospitals, ... wherever we are invited to share our message of hope. And I haven’t been hospitalized since I rescued her, a true miracle.

Since few are acquainted with the illness, I’ve written several books including: Gracie Comes Home and God Made Only One of Me, developed a web site, www.DianeDike.org to inform and help, as well as an outreach non-profit organization called Second Chance with Saving Grace. I’m strong and courageous in spite of persistent challenges because I’ve learned the key to happiness: focusing not on myself but on the needs of others, just as Jesus did.