It is not known why antibodies become solid in cryoglobulinemics. It's a difficult disease to overcome but it is possible.
Learning to live with cryo requires four P’s:
* pampering,
* patience,
* prevention
* practice.
You must take care of yourself, both physically and mentally. There seems to be a pattern of acceptance and coping that is similar to the process of grieving.
Patients tend to go through phases of disbelief, denial, anger, frustration, sadness, isolation, a sense of loss of self, fear, and acceptance. If you find yourself in one of these stages, you are in good company. Many have been where you are. There is no rule as to the length of time you need to work through a stage and you might re-enter a stage more than once.
Dealing with any chronic illness will affect every area of your life, allow yourself to process the changes. Upon losing my mother to Multiple Myeloma and my best friend two days later to Huntington’s Disease, a friend gave me good advice: "It's okay to be sad, just don't be sad too long."
Cryoglobulinemia is disabling for many patients; it can affect every part of your life. You may have cryo but it doesn’t have to have you. With preparation, planning and teamwork with family and friends you can still have a high quality of life. If you are not careful, the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease will haunt you. It’s not possible to live life as usual once cryo comes. The fact that there are often no existing effective cures or treatments adds to the high level of pain and suffering endured by patients and their families. Plus, you may look fine but feel horrible which can be hard for those who love you to understand. We recommend you get professional help and talk with our Grief and Encouragement Coach. Allow yourself and loved ones to process the changes this disease brings.
Prevention is Key Top 19 Ideas offered by the CVO team to help you stay safe!
1. Take measures to AVOID cuts especially on your extremities. Slow healing and infection can cause unnecessary problems and amputation. Be careful SHAVING! Keep a check on hands and feet for open sores and be sure they heal properly. Also check for vasculitis/purpura outbreaks and do not ignore extremity pain.
2. Avoid air conditioning, drafts and damp cold places. Careful to avoid wind if you are perspiring. Don't take any chances. Every Cryoglobulinemia patient has a different temperature tolerance based on variables such as stress levels, medications and exposure? Do you know the variables that trigger you and your own tolerance to temperature? Dress warm for air conditioned businesses such as grocery stores and medical facilities. Layering is recommended.
3. Request a courtesy copy of your labs. Create a list of physician contacts. Also a page with diagnosis by date, surgeries/dates, procedures, X-ray/MRI's, etc. w/dates. Bring this with you to all doctor appointments.
4. Make a list of all doctors, their specialties and contact information, with your medication list. Also make a list of all the questions you have for your doctor when going to an appointment.
5. Do you carry your medication list with you at all times? Does your medication list include supplements, herb and over the counter medications? Wear or carry medical alert information. Be sure it states "No contact with anything cold."
6. Wear a hat or blanket over your head even to sleep.
7. Cover your hands when entering refrigerator/freezer. Keep microwave packs handy to heat up as needed.
8. Have an emergency plan for power failure, accidents, etc. Keep an emergency kit with you. Kits can include blankets, toe warmers, socks, gloves, hats, sleeping bags, etc.? It is also good to have your medicine list and emergency contact numbers in this bag.
9. Don’t forget that your nose and ears are susceptible to damage (inside and out). Cover them especially in variable or windy weather and when exposed to cold temperatures (cover your face to warm the air you breathe).
10. Consider getting a handicap tag to shorten your walk in cold/wet weather?
11. Avoid drinking or eating cold items. Room temperature drinks without ice is beneficial in prevention of gastrointestinal flare ups, pain and damage.
12. Use tepid water while you brush your teeth and have Dentist do the same.
13. Get your eyes checked regularly.
14. Consider an automatic starter to preheat your vehicle, purchasing a vehicle with heated seats to stay warm during cold months and hand control training to keep legs elevated so blood doesn't pool and burst through the skin.
15. Can you move to a warmer/dry climate especially during winter months? Using an electric mattress pad is a great way to pre-warm your sheets.
16. In the winter be prepared to stay inside but still get important exercise and eat right. Can you get a warm therapy tub? Swim against the current and a hot tub to move into after your swim? What about a mini trampoline, treadmill and other inside exercise items.
17. Stay productive, connected and impact others. Volunteer! SCwSG/CVO offers so many opportunities for you to participate right from your bed such as: webinars, volunteer outreach using your gifts and talents to make things, fellowship gatherings and Bible studies? Studies show the key to happiness and overcoming personal problems is in reaching out to help others. Join our incredible team today!
18. Move around often to keep blood flowing effectively to lower extremities for vascular health, to avoid blood clots and help with proper healing of any ulcers or sores that may pop through skin from purpura. (Purpura is purple/red-colored spots that occur on the skin, organs, mucus membranes, including the lining of the mouth. It occurs when small blood vessels leak blood under the skin. When purpura spots are very small, they are called petechiae. Large purpura are called ecchymoses.
19. Keep extremities dry, warm, protected... no sandals, high heels or barefoot activities unless you are walking in the warm sand on a warm beach.
20. Request a ‘Bair Hugger’, a medical device that forces warm air into a blanket to keep your body temerature safe, for all medical procedures or operations? Request that any blood products or infusions be warmed?
Sometimes you can do everything to the best of your ability and still have serious issues and flare ups without understanding how or why. All you can do at those times is remember you did the best you can. Keep reaching out to our CVO support group, don't isolate and keep on keeping on! You can live a life of impact, purpose and victory!
Helpful Products
Links to some beneficial products that may help make living with cryoglobulinemia easier.
Visit our store page to find books, warm hats, microwave warmers and more. .
• USB necklace, key chain or bracelet - digital Personal Health Records
• Medical Alert USB Bracelet
• http://www.warmers.com/default.aspx• http://coreheat.net
• http://www.mysnuggiestore.com
• http://www.buffwear.com• http://www.viper.com
CVO does not have any relationship with these companies and does not gain financially by recommending them. CVO is not responsible for the actions or products of these companies.
On a positive note, many patients that have endured proclaim that cryo has helped them in many ways. Here are a few things their illness taught them:
1. Compassion
2. Priorities
3. Who their true friends are
4. Humility
5. True self, their illness doesn’t define them
6. Gratefulness
7. Patience
8. Showing them how much inner strength they have
9. Not to be so serious
10. Perseverance
The list was almost 300 long! Hope is never ending. Focus on all you do have instead of what you do not. You are not alone.