Dr. Diane Dike and Friends 501c(3) Nonprofit: CVO

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Monday, February 15, 2016

Nice Things to Say to Someone with Chronic Illness - A Cryoglobulinemia Perspective

If you don't have something nice to say then don't say anything at all. -Mom

The health benefits of being positive and prayer have been known for some time. It's a better day when people around you are considerate, kind, thoughtful and helpful, isn't it? However, it's also important to be that kind of person to others. My husband thinks I'm silly but I still have the naive idea that most people are good with the best intentions.

Living with a chronic illness for over 25 years causes me to stop and think about the energy it takes just to live never mind deal with drama and negativity. I have a sign on our wall: "This is a drama free zone!" With foster children of all ages coming through our home it's a really important guideline for us all to follow.

Finding something nice to say to people automatically makes the day brighter. Is there any better way to have sweet dreams than to know you've been a blessing? When I was in high school I came up with a fun game called "beep and wave!" We'd drive around beeping and waving at strangers just to make them smile. My kids and I still do it while listening to our favorite tunes. We laugh hard and feel good. It's fun to make someones day.

At times, chronic illness makes joy hard to find. Offering praise and encouragement is much better than being a killjoy or energy sucker. We are all enduring challenges. I actually had a foster child tell me, "You kind of freaked me out for the first three months because I'd never seen anyone as happy or who smiles as much as you." The mantra I use with my children is: "If you don't have something nice to say then don't say anything at all."

Hurting People Hurt People

Over the years I've had a couple of volunteers freak out. I don't know if it was the smile, their personal medical issues or what but they decided they were going to be hurtful. They would treat me and other volunteers terribly. On the phone and in emails they would shout and be negative. You couldn't win no matter what you did, they were just unhappy people. It was a tough leadership decision but I couldn't allow them to continue working with us.

Hurting people hurt people and that is sad. Isn't it better when people work together and have something nice to say even in tough situations? It's possible to be nice and say kind things to everyone, at anytime. It's a choice. Those who refuse, well, we have to have boundaries and sometimes enough is enough.

Verbal Landmines

There are verbal landmines that can explode even with well-intentioned comments like, "Your lucky it's not cancer." Dealing with a rare and painful blood disease called cryoglobulinemia vasculitis is tough. And I try never to tell others they are lucky it's not worse or how to respond. I simply offer a listening ear, encouragement or ideas if they ask for any. I know it could ALWAYS be worse so I count my blessings, try to focus on all I have instead of what I don't...

Most people understand that people with disabilities can utilize the life-saving help of a service dog. But service dog etiquette is sadly lacking all too often. People know that they are not suppose to distract or pet a service dog. Yet, there are those who try to touch, talk to, or those who think it cruel that she is working and others who ask If I'm blind. In an effort to always error on the side of grace I think many questions from strangers are clumsy attempts to learn, get to know us or better understand situation, my disease or unique medical challenges.

Bad Experiences

Some of the worst experiences of my life cannot be explained by anything other than people being cruel. I watched my mother die of multiple myeloma. I was with her in Florida for the last three months of her life. Cryoglobulinemia is a rare disease that is closely related to this rare bone cancer. At my mother's viewing after three long and grueling months of watching her suffer, my Dad was fighting Parkinson's and my best friend who died two days after mom loosing her battle with Huntington's disease... can you believe a man I'd known most of my life whispered in my ear, "Why don't you get out of that wheelchair and pay proper respect to your mother." I almost fell out of my chair in shock. How is it possible someone could be so cold-hearted?

Friends

I had an email from a girlfriend who couldn't accept the weakness and changes that cryoglobulinemia forced me to face. The first time she saw me using my wheelchair she decided to reprimand me by telling me she never thought I'd give up and give in to using a wheelchair. Fighting this disease is a matter of life and death. I must do everything I can to LIVE, FIGHT it and participate in life as safely as I can.

God Curse
The third worst experience that still happens is folks telling me if I had enough faith God would heal me or I'm cursed by God because of my sin and getting what I deserve.
I can think of much I'd be willing to give to have my healthy athletic life back. This is not the type of negative attention I'd EVER ask for. I still know, believe and pray that a healing is possible but sometimes the real miracle occurs when He says, "no" and we can still believe. Like Job in the Bible who said, "thou God slay me yet will I trust in Him."

Good things you can do

Send a text, write a letter or email, or call just to tell your loved one how special they are. Be specific about the wonderful things that they do and those unique about them that make you feel loved and terrific. Laugh about old times, goofy stuff and share the memories that have tied you together. Pleasant surprises work wonders in the development, advancement and maintenance of a relationship.

Use your words to be a blessing. Applaud them for all that they accomplish (even getting out of bed for a shower can be exhausting and overwhelming) don't forget the little things. Make it a point to appreciate their effort. Tell them: "You are very important to me. You make me smile when I need it the most. I'll come running when you call."

Good Things to Say

The key to interacting with a person with chronic illness or disability, is to interact with the person, not the disability or the service dog. It’s people first … not the dog or health challenge.”

Some things to be mindful of when you care about someone with a chronic illness include three of the most wonderful words: I love you! Actions speak louder than words so it's important to show it too.

A great conversation starter when meeting someone new: offer a compliment. Don't complicate things by cooking up an elaborate compliments that sound insincere. First impressions are lasting, don't over do it.

If it's a nice thing to say, why wait? There's nothing to be gained by postponing, so don't hold back and make someones day today even if they think it strange that you are so happy and smile much.
Stay Strong and Courageous!
Diane :D

When You Hear Hoof Beats… it Just Might Be a Zebra

Rare Disease Awareness

“When you hear hoof beats,” a saying among doctors, “Think horses, not zebras.” When you present your symptoms to a doctor, said doctor is most likely going to think of the most simple, common diagnosis first, order a test or two, write you a prescription, and send you on your way.

But what if this approach doesn’t work?

What if your medical problem really is less of a “horse” and more of a “zebra”?

Such was the case for Dr. Diane Dike of Eagle, CO. While working as a teacher at age 23, Dike’s legs turned black, painful and were nearly amputated. After three years of recurrent similar episodes of extreme intensity and multiple hospitalizations, she was diagnosed with cryoglobulinemia, abnormal proteins in the blood that turn the blood into a jelly-like substance under cold and stress. Inflammation of the blood vessels, in turn causes chronic joint pain, rashes, digestive problems, and damage to the heart muscle and other organs.

Cryoglobulinemia is most common in patients with hepatitis C. For a woman with no history of hepatitis to be diagnosed with cryoglobulinemia in her twenties was unheard of. She is considered one in a million.

Dike frequently uses a wheelchair to keep her legs elevated in order to prevent attacks; she must dress in full winter clothing to keep her body warm to prevent attacks, but that doesn’t stop her from living a full life of rescuing animals and children. A Ph.D. in counseling psychology and human services, Dike started the nonprofit Second Chance with Saving Grace, an organization that offers help, shelter, and comfort to suffering adults, children, and animals. She began the world’s first Cryoglobulinemia Vasculitis Organization CVO. She helps people know that they are not alone.

Cryoglobulinemia is only one of approximately 7,000 rare diseases in existence-- diseases that affect less than 200,000 people in the U.S. population. For most of these diseases, no cure or treatment exists.

A lot can be said for the development of medicine in the last century. Doctors can now repair trauma and treat disease better than ever; however, we still have farther to go. Additionally, patients, families, and caregivers of those with rare diseases face profound disability, insurmountable medical bills, lack of community support, and unbearable stress.

As if those problems are not enough, the medical professionals we trust to treat disease and relieve suffering often know very little about rare diseases. Complicated symptoms that take one to multiple specialists might result in misdiagnosis or no diagnosis and inadequate treatment. Plus, research funding is lacking and clinical trials are hard to organize.

We need better treatments and diagnosis for rare diseases. We need less toxic treatments with fewer side effects. We need patients to be able to go into a doctor’s office with the expectation that the doctor will believe their symptoms, even if they do not look sick. We need to perform the diagnostic tests that are absolutely necessary. We need insurance companies to cover more and better treatment for rare diseases. We need patient-centered, compassionate, individualized care from our doctors and hospitals. We need more physical and emotional support for families and caregivers of those with rare diseases.

The last day of February of every year has been deemed “Rare Disease Day.” February 29, 2016 represents a day of hope for change in the study, treatment, and prognosis of rare diseases. It reminds all of us that there are “zebras” in our midst that need and deserve our support.