My twenty year old daughter just called crying, saying she can no longer handle the pain of the mitochondrial we both share. I am so frustrated that I can't do a dang thing to ease her pain. I can only relate, and it does get unbearable at times, and to know my daughter has that type of pain coursing through her body breaks my heart. I've taken her to all fields of specialist, trying to find relief, with no such luck! All I can tell her she's not alone, I feel it too. I want my daughter to be ok, I'm trying to fight for her on the little strength I have left in me. I'm tired of coming up short! I'm tired of hearing there's no cure! I refuse to believe that! Not when my she needs me to have Faith and always keep trying!
faithfuljayhawk faithfuljayhawk
46-50, F
3 Responses Aug 20, 2014

I've never heard of this it must be hard I know it's horrible your daughter has it too but it must help that you both understand the pain. Does anything help I suffer a different kind of pain and recently did acupuncture which helped allot ...

Sorry to hear you suffer with pain as well! I believe God made mine not be so bad until now I'm 44 she's 20 and our disease is right on point with each other. I'm meant to be here to find away through this for her. I believe that with my whole heart. I'm tired of running into road blocks. She is so beautiful, and smart, kind. I look at her and get angry that she has to endure such pain. I hope your feeling well today!

You are both tired. But you also feel guilty because she is your child. BUT IT IS NOT YOUR FAULT that you both have this condition.
She knows you are only human, but so is she.
Allowing each other to admit how much the unfairness of this condition hurts might let a little pressure off?

I thank you for that insight, a lot of my frustration is is cannot find a doctor for us. And I myself have so much blame towards my own family that won't go get tested that shows system's, to give the genetic doc more info. My biological mother hates me and is holding out, out of spite. But blaming anyone isn't going to do any of us any good I just want cooperation to help us. It how we were born I made peace with that. I believe my daughter has too. I'm fighting for our lives. I feel we are running out of time!

And you will know you have done everything possible, which is all you can do.
Blaming ourselves never helps does it?
I wish you strength to be the parent you want to be. You are already so much better than your parents to you. Your daughter will understand.

Thank you! Been on phone all day to different doctors offices they all said, will get back with me by end of day! Not one called back. Again I waisted my energy. So frustrating! Obviously Kansas is not the state to have this disease in. I actually feel sorry for the medical professionals in these circumstances. I hear often I haven't heard about that in thirty years! Since medical school. Ugh! God give me strength!

I have a rare condition which doctors have always been puzzled by, but it is not so serious as yours. I have passed it on to my children and my grandchild.
You must take care of yourself . . .get some rest! Without it you will not be able to do the rest of it.
Your energy is not wasted, because it was spent doing something you believed was worthwhile .. .and still might turn out to be one step towards getting some useful results.
It is not always possible to know which actions were the useful ones until much later, if ever . . . .
You know you are doing what you need to do. Now remember to be kind to yourself too :)

1 More Response

Cannabis oil. Google it.

Will do. Thank you!

Good luck. I've heard it does some amazing things.