Friday, September 20, 2013

A health update

A little health update:

I had surgery last week that went very well.  Except for the anesthesia.  I had a biopsy of my breast which came back great.... just extremely dense fibrous tissue all matted up together and something else that I can't even pronounce let alone spell correctly.    Doesn't matter though because it's benign and that's good enough for me.  My dad reads this so that's enough talk about my boob.  I never had pain from the procedure which is great, however, I experienced a tremendous amount of muscle weakness.  So bad that for a couple of days I couldn't even make a fist.  Breathing was hard and controlling bodily functions was tricky.  Too much info on that one?  Sorry.  I slept a lot and laid flat because as soon as I was standing for a couple of minutes I became very dizzy.  All is good now.  I'm back to bench pressing and cross fit... totally kidding.  But I can stand and walk which is great.  We appreciate the little things around here.

After 15 months of waiting, I saw the Mitochondrial Specialist down at UCSD.  Some more of the test results came in and revealed where the deficiencies in my DNA cells are.  The doctor spoke to me while educating 3 other MD's who were doing their fellowships.  I nodded along with all of the them and wondered if they had any idea what language he was speaking.  I didn't.  I looked over at Anthony and he seemed to be following along so I figured when we got in the car I could ask how the appointment went.  After class, I mean the appointment,  the doctor asked if I had any questions.  Just one... the same one I always have.  Have their been any cases where a patient completely recovers and regains all the health they once had?  The short answer as always was no.  BUT, medicine is coming along so quickly and we are just a couple of years away to finding a way to reverse the damage.  Good enough for me.  Actually better than that.  I felt so much relief hearing how close we are.  Even if I don't get my health back, I know that if I passed this on to my children or if they pass it on to theirs, there will be a cure!!!  I hold on to that hope with every ounce of energy I have left.  I have a complex 1 deficiency and another one.  (I am having the report sent to me because apparently I can't remember everything.)  There were also other genetic abnormalities found that are good to know as far as drug interactions.  Now I know not to interact with drugs.  People with complex 1 deficiencies also have a really hard time with anesthesia.  That makes sense now looking back at all those surgeries.  The unfortunate part is that because of the nature of the disease there will most likely be more surgeries in my future.

Since we are talking about health... and talking about me... I thought I would clear up a few misconceptions about mitochondrial diseases (and chronic illness in general).

What is it?

"Mitochondrial disease is a group of disorders caused by dysfunctional mitochondria, the organelles that generate energy for the cell. Mitochondria are found in every cell of the human body except red blood cells. Mitochondria convert the energy of food molecules into the ATP that powers most cell functions.
Mitochondrial diseases are sometimes (about 15% of the time)[1] caused by the mitochondrial DNA that affect mitochondrial function. Mitochondrial diseases take on unique characteristics both because of the way the diseases are often inherited and because mitochondria are so critical to cell function. The subclass of these diseases that have neuromuscular disease symptoms are often called a mitochondrial myopathy."(Thanks Wikipedia)
If you want to read more about it click here.

So I have dysfunctional mitochondria, we all knew I was dysfunctional, now we know why.  

Nothing I did or didn't do caused this disease.  It's just how God made me and I am OK with that.

It can't be fixed by using my mind.  I tried.  Wyatt even tried using Jedi force to make it disappear.

I am not depressed.  The opposite actually.  I have so much love and appreciation for life that even when times are tough, I don't get too upset.  It is what it is.  It's not like I have a disease caused by something like obesity and if I just lost weight I could be healthy.  If I can't fix it, why stress?  I am also completely aware of how good I have it.  Things could be so much worse and I am so incredibly grateful for all the amazing blessings I have in my life.  They are countless and I make sure to thank God for them all day, everyday!!!

I look "normal" on the outside and always will.  The disease is inside my body in places that you can't see.  Along with many other people with chronic illnesses we try hard to make ourselves look good.  No one wants to look "sick" (which I'm not really sure what sick looks like)  Hearing, "Oh you look so good though" translates to, "You must not be sick."  I appreciate the compliment but make sure you are not judging someone by how they look.  Like when they walk out of their car and into a wheel chair.  "Gasp, she can walk!"  Seriously, not everyone in a wheel chair is paralyzed.  Common misconception... happens all the time.

I have no doubt I will be healed.  I will be patient and wait on His timing.  In the meantime I will continue to be grateful and joyful everyday of this beautiful life I get.

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