Health update July 2014

We've been back from Mayo for a little over 3 weeks now.  Things have been really busy for our family around here.  (Of course, with 3 kids and 3 separate schedules...when is it not?)
My stand time over the last few months has gone up again.  I can stand anywhere from 5-20 minutes.  The times I get to be up and around for 20 minutes are huge blessings!  I've taken full advantage of them.  I cannot stand in one place, but if I'm moving around, somedays I can even cook a small meal with help.  I cooked something for the family for the first time in YEARS!

With all the blessings of standing longer, I've also had some lows.  I'm battling with chronic dizziness again.  This happens every 3-4 months and lasts for weeks.  It can get quite annoying.  My blood pressures are lower than normal and making my days not as cheerful.  I've been able to do 3-7 minutes at a time on the recumbent bike for months now, but am frustrated with the dizzy spells making me not eager to do so.  When I'm not up and about, I'm usually not feeling very well.  I have to be in bed several hours a day with my head on the pillow.  It's truly a crazy roller coaster ride each day.  (So much uncertainty each day)  Some of the revealing test data has given me some peace when certain things arise.  Just the new understanding of why it's happening to me has been very freeing!

I'm continuing some of my testing at home until I return to Mayo in October for another round of tests.  My biggest challenge right now is keeping my mind OFF of my illness.  After 2 intense weeks at Mayo, it was 24/7 focus on 'sickness.'  I have to work very hard to keep my mind on my family, my hobbies, my life, and the summer!  It's very important for anyone suffering with chronic illness to not allow the diagnosis, the information, the tests, and the illness to become all consuming.  For that reason, I'm not talking much about the upcoming return trip to Mayo or how I'm feeling.  I can't ignore how crappy I feel, but after a prolonged focus on my symptoms, it's time to put that to rest for the next 3 months and focus on family!  It's easier said than done----trust me on that one!

So, unless there is a big change, I probably won't be doing much 'health' updates for the next few months.  I will continue to blog about living life with chronic illness and about life.  I cannot escape my illness or its immense limitations, but I can allow the day to be about LIVING and not about sickness.

(read more about living life with chronic illness by clicking on the links to the left)

THE FIRST MEAL I HAVE MADE FOR MY FAMILY IN YEARS.  I HAD TO HAVE SOME HELP GETTING THE THINGS IN AND OUT OF FRIDGE AND CUTTING UP THE VEGGIES, BUT I WAS ABLE TO COOK MYSELF!

You don't beat chronic illness, you live with it!

Does anyone really ever learn to live with chronic illness?  How can a person resolve to live with constant pain and chronic illness for the rest of their lives?  Each battle is so unique and each person has their own journey.  However, there is a common thread.  Living with chronic illness is not only a difficult challenge day in and day out, but also something that will shape the rest of your life.  While someone cannot control their illness, they do have some power over how the illness will control them.

Let's clarify something here for those who are not familiar with chronic illness.
Chronic illness is NOT cancer. You don't 'fight' it. You don't 'beat' it. You cannot 'will' it away, or believe it doesn't exist.  We do not use the words 'cure' to mean 'treat', or 'fight' to mean 'deal' with.

Chronic Illness is:

• Dealing with
• Coping
• Managing
• Containing
• Living with
• Controlling
• Putting up with
• Handling
• Living with

Managing and dealing with chronic illness require that you develop coping mechanisms to move forward with the goal to minimize suffering and maximize daily living as much as possible. For some diseases there are therapies, treatments, and medications to help ease the pain and the progression of the disease and its effects.  For others, it's learning daily, to set good parameters and limitations to reduce pain and stress on the body.  

Nearly 1 out of every 2 Americans suffer from some sort of chronic illness (approx 133 million).  Over 26 million Americans have some sort of severe disability/illness.  While some diseases are due to poor health habits, many are genetic, contracted, or of no fault of the patient.  Chronic illness can be anything from fibromyalgia, diabetes, arthritis, to such things as  Crohn's, lupus, cardiovascular conditions/diseases, dysautonomias, multiple sclerosis, Parkinson's, rheumatoid arthritis, and so many more!   7 out of 10 deaths in the U.S. are from chronic illness alone.  The severity and the longevity of the illness can be as different as night and day. But learning to live with any chronic illness can take its toll on the individual and their family and be a daunting daily task just to thrive.

In addition to dealing with their individual disease or illness and all that it entails, many chronically ill patients can and do often suffer from other side-effects from being chronically ill.  I've tried to research (and, of course, use some from personal experience) a few of the most prominent things a chronic illness sufferer may have to deal with in addition to their already difficult consolation of disease symptoms.

• Depression
• Poor nutrition due to lack of appetite or overeating
• Sleeplessness
• Isolation
• Aches and pains from lack of ability to exercise
• Feeling of doom or fear
• Medicinal side-effects
• Lack of intimacy
• Loneliness
• Stress
• Lack of emotional or physical support
• Anger
• Headaches
• Financial difficulties due to expensive medical treatments and/or loss of work
• Loss of relationships
• Inability to participate in normal activities of life due to physical limitations or lack of mobility access in public places
• Physical sensitivities: such as foods, lights, chemicals, noises
• Lack of activities and social outings
• Guilt
• Lack of control over life and circumstances
• Burden to caregivers and family
• Inability to lead a 'normal' life, career, or education
• Fatigue
• Feeling overwhelmed
• Constant focus on the illness and not the individual
• And I'm sure there are many, many more!

So, if nearly 1 out of every 2 Americans deal with some sort of chronic illness, where do we go from here?  

What are some ways to deal with and cope with chronic illness?

• If you can change your lifestyle to fix your illness....DO IT! (e.g. some types of diabetes, hypertension, some forms of heart disease, and a few others)
• Get informed!  Learn about your disease so that you can help yourself.  Knowledge is power.
• Find a good doctor.  This is imperative to your care.  You need to know you are trying the best medications and therapies to ease the pain and discomfort.  Know that you doctor is on your team.
• Seek support from others who are suffering from some sort of illness similar to yours.
• Watch your mental health.  Seek professional counselors for those dealing with severe chronic illness or life altering diseases.  You can't do this on your own.  Dealing with the guilt, fear, depression, and dramatic changes can be overwhelming.
• Keep active!  Easier said than done.  But as someone who has had as little as 90 seconds of stand time, there is always something physical that you can do, even from the bed.  It helps your muscles, aches and pains, and mental health.  It can be as simple as bed leg raises, just do it every day!
• Think positively!  Again, easier said than done!  I choose joy!  It's a choice even in the face of severe physical limitations and pain.  People who see the good in life tend to deal with chronic illness easier than others.  Just choose joy!
• Be deliberate about your circle of support.  You may have to do some pruning along the way.  Not everyone in your family or circle of friends will be your support system.  You need people who will encourage, be present, and be proactive with you!
• Remember you are more than your disease.  Spend the time needed to research and seek medical treatment, but don't let it define you.  Continue your hobbies, relationships, and activities as you can.
• You will have good days and bad days.  Learning to live within those parameters is one of the hardest things for me.  Accept what you cannot change.  
• If your physical limitations have required you to withdraw, try to keep connected with friends and family.  Use the internet, phones, and texting if that's all you can do.  Don't withdraw completely.
• Join a support group.  (But be aware of the 'woe is me' and the one credit short of a PhD members)  :)
• Open up!  People don't know how to help most of the time unless you tell them.  Explain what helps and what doesn't.  
• Pray!  Studies show that those with faith based views tend to have less depression and deal with the long term effects of illness with more ease as a whole.
• Eat healthy.  No matter what illness you have, eating poorly can add to the side effects of your illness.
• Get rid of the unnecessary stress.  You have enough to deal with already without adding to the stress.  Weed out and prune often.
• Allow time for relationships, intimacy, and friendship.  If you are married, it doesn't mean the romance had to die with your old life.  Be creative, make new memories, and celebrate the little things.
• Create a new measuring system.  A person who is chronically ill can no longer measure success by the same standard, rewrite your algorithm.  Today might be considered amazing because you were able to spend time reading a book to your child.  If you continue to measure happiness by the old standard, you will continue to be disappointed. 
• Remember you get to be happy, too!  Just because you are sick doesn't mean you cannot enjoy life.  Allow yourself to be happy.  Buy something just for you.  Make the room where you stay most often a happy and cheerful place.
• Acceptance.  Learning to accept the cards you have been dealt is half the battle.  If you cannot fix it, make the best of it.  It's all about turning those lemons to lemonade!  
• DON'T STOP DREAMING!  Your dreams may have changed or need to be revised, but you can and should still dream.  Give yourself a new thing to strive for that has nothing to do with your health.  It doesn't even have to be a physical dream.  Just don't stop dreaming!