Are you feeling depressed?

I get that question every time I see the neuro.  I smile and say, “Not really.” 

I must be the exception, because I am NOT depressed.  Upset.  Pissed off.  Frustrated.  But not depressed.  Praying for a cure?  Yes.   Want to feel better daily?   You bet.

Fighting a daily war against myself is very difficult.  No one knows the daily struggle of  “normalcy.”  I fight to not use a cane.  When I do, I tend to keep it off the ground.  My feeling is that if I do not use the crutch, perhaps I will not need it.  The more I walk normally, the more normal I will walk. 

Walker?  I have a walker with no wheels and the two of us do not get along.   As a dance partner when healthy, I had two left feet.  Add a walker, and my dance partner is now stiff as a rod, literally.

My walking life roams from goal to goal.  Table to door.  Door to chair.  Chair to bedroom.  I have two little steps up and down on the way to our bedroom.  Don’t trip!  Extend hand.  Be secure.  Goal, Goal, Goal. 

I have lived much of my life through goals.  Business. Achieved.  Personal: Find a beautiful intelligent woman to marry and keep the marriage going.  Daily goal: Love my kids. 

The closest thing to a walker is a shopping cart.  When I go to the store, I can walk, with out aid, to the shopping carts.  That is my goal.  I get to the cart and I can wheel myself wherever I need to go.  The cart and I go to all parts of the store.  When I need a break, the cart and I find a place to sit to recharge.  The cart represents an agreeable partner to whatever my needs are.  Check out.   Roll to the car.  Hold my stuff.  The cart and I go our separate ways.  When we divide, I know the partnership will reunite next time at the store.

Back to reality, depression is not what I face.  Frustration leads to much poorly spent emotion.  Why am frustrated?  I am better, but I feel like I am walking on eggshells. 

I have ZERO post CCSVI follow-up.  That tinge I feel, are my veins narrowing?  Pain here or there, is that related to CCSVI?   Fingers tingling?  Unknown cause.

So here I am, full of questions and zero answers.

I listen to the radio.  A popular public service ad tells us to ask our doctors questions.  The ad tells us we ask questions for the most frivolous things. But at the doctor, when asked if we have any other questions, we clam up.  Excuse me, I have a question.  I have had a procedure using well-known techniques to feel better.  Can you assist me in improving my condition post CCSVI?

Doc, I will make you a deal.  You learn from me.  Listen to improvements and issues.  Check with other physicians.  Learn from me, a patient who has more guts than brains.  I am very in touch with my body.  Interview me.  Listen to my answers.  I hope to surprise you at new answers to questions that can help other people with MS.

A patient should be his own best advocate.   Fighting the system as we do, leads to a very independent streak. 

Question everything, and listen with open ears and an open heart.