Your body HAS to have food to function - in order for your brain to work appropriately, your lungs
and body systems to process air & food. Would you buy a car and then not put gas & oil in it
but still expect it to be usable of course not. All you would have is a huge paperweight
The same thing applies with the human body. You have to have food & water to survive - or you
turn into a really goofy looking paperweight -lol
My mitochondrial disease is partially genetic - my dads mother died when she was 27 and some
members of my moms family had various forms of the disease. Generally the males are "carreirs" and the females get the actual disease - my son is now 27 and he has decided he
doesn't want to have kids just in case he passed the disease on to them. I am the only one
out of 4 kids that has the disease (Lucky me !) Here are the basics of mitochondrial myopathy
The body is made up of millions of cells in ever area (skin, muscles, nerves, organs etc....)
In my body those cells have their own form of anorexia - they are unable to absorb or process
nutrients. So they just die off. The disease has gotten to the point where my red blood cells
had started destroying each other and I ended up getting transfusions overy 3 wks for 2 yrs
I still have to go every month for all kids of blood work and to get the port-a cath in my chest ck'd
So if you starve every system in the body bad things happen - your body turns on itself
In my late 20's I was an ICU nurse and one night I had a heart attack, 6 months later I had a stroke
I had starved myself to the point the muscles , nerves and valves in my heart were all screwed up.
Then things really went down hill - various body funtions quit working (bladder, bowels etc...)
I knew I was in deep trouble when part of my diaphragm became paralyzed and I needed machines to help me breath. Then I began to lose my vision and I am now legally blind and I
have NO peripheral vision in either eye - I can see whatever is directly in front of me but that's it
My visual field (total size of what I see is about the size of an idex card) - I don't drive obviously
4 yrs ago the drs put in a pacemaker so my heart is much more stable. The disease also effects
coordination, muscle strength, dexterity (or I shold say lack there of) So I lost the use of my legs
and my hands and even my voice at one point - My husband refers to the 3 yrs I couldn't speak as
the good years. The disease paralyzed my vocal chords. So thats how I ended up in a wheelchair
for 10+ yrs. At one point one of my drs told me OK you have maybe 3 months to live...maybe
And to top it off I was diagnosed with breast cancer (the anorexia effects yor immune system)
and had a partial mastectomy - that screws up your self esteem BIG TIME. The part that really hurt me was when my husband told me all the things he planned to do once I was gone - including where he wanted to move and the type person he thought he should date. And he wasn't saying this to motivate me - he was heartless enough to say this because thatshow he feels
That totally pissed me off beyond belief - Thats when I decided I am not going ANYWHERE.
I had nothing to lose so I spoke to my drs about experimental treatments - that worked
Then I started researching the disease to find out exactly what nutirents, vitamins & supplements
were the most vital to getting my body back under control. Within 6 months major progress
So then I started exercising at first I couldn't lift a gallon of milk so I started off lifting soup cans.
Finally I bought an exercise machine that wouldn't hurt my joints and used it daily. Now I can
use a BowFlex with no problem.
The people that stood behind me all the way were my Drs (of course!) my son, one of my brothers
and my mother (she died of cancer 10 yrs ago) For the most part everyone else didn't want to see
me or hear from me. I was an embaressment to them. My husband would rather work than stay
home and see all this. I learned why complain - no one wants to hear it (including me !)
So I found ways to turn everythng around. Now I own my own business as an advocate helping others that no one else is willing to help because its an out of sight out of mind kind of world.
When my neurologist told me "You did it Brenda, you're in remission" I was stunned. I am their first patient to ever go into remission. That would not have happened had I not taken a stand looked for answers and fought back. Sure I had scary dark moments, but those moments helped make me into the successful person I am now. I'm out of the wheelchair, I can wear 5" heels and
look great (for the most part) I know I will never drive a car, but at least I can see. For every CAN'T
there is a CAN. I know I will always have a mitochondrial myopathy, Iknow I will always be anorexic - but I have the power to keep it totally under control. And I will
Maxi I know you can turn things around too. Don't look at the weight gain as fat - it isn't..Its fuel
Until your body gets used to having the proper fuel it may respond a little goofy -its in shock -lol
You don't want to end up in the shape I was in. There is so much more to life than anorexia
Where do you want to be in 20 yrs? If you don't take care of yourself now you may not be here in
20 yrs. I will absolutely do anything I can to help you, and I know a lot of others feel the same way.
Together we can get through anything
By the way, when your nutritionist tells you that you gained anything - THANK HER, give her a hug
she is trying to save your life. There is so much more to you than skin, bones & body fat
