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.