30 Things About Living With Mito You May Not Know

30 Things About Living With Mito You May Not Know
1. The mitochondrial disease my son and I are affected by is: Suspected Complex IV Deficiency / COX Deficiency
2. I/my child was diagnosed with it in the year: Robby in 05 and I hopefully will find out for sure in 09
3. But we had symptoms since: his since birth and mine since childhood
4. The biggest adjustment I’ve/my family has had to make is: Learning how to cope with a disease that will eventually lead to death. Living with an invisible disease.
5. The mito gene my family has is: (if known) Not yet known
6. I explain mitochondrial disease to others that inquire by: I tell people it is like when the power souce in your area goes dark. When our cells don’t work we shut down and don’t work at full capacity.
7. Most people assume: we are not handicap or that we are hypochondriacs
8. The hardest part about mornings are: Nausea and finding the strength to get out of bed.
9. The hardest part about nights are: Finding the energy to get through the day to just make it to nighttime!
10. Each day I/my child takes 8 pills & 3 vitamins.
11. Regarding alternative treatments we: try them but not sure if they really work!
12. A mito-related organization I support is: www.umdf.org
13. Mitochondrial disease affects my education, work and career by: Because people are always questioning why I have another Dr appt or that I have to take another day off. But what really frustrates me is having to cut through red tape for insurance needs because my rinky dink insurance company is connected with my hospital and only works the same hours as I. Believe me I would rather be focusing on work but I have to juggle insurance and docs during the day too !
14. People would be surprised to know: That my son and I were healthy at birth!
15. The hardest thing to accept about mitochondrial disease has been: Knowing that there is no cure and my baby boy is going to die from it. :(
16. Something I never thought I could do with my illness that I did was: become more socially aware of others and networking.
17. The awareness about mito: That I want people to know is that it is genetic. I did not cause my son to be sick intentionally.
18. Something I really miss doing since affected by mito is: Just being able to get up and go, now it is “did I pack diapers, enough meds, helmets, braces, extra shoes, walker, wheelchair/stroller”
19. It was really hard to have to give up: Normalcy
20. A new hobby I have taken up: Social networking and meeting other great Mito families!
21. If I could have one day of feeling normal again I would: Scream to the world how great it would be and never take good health for granted again! Hug my baby and cry tears of joy!
22. Mito has taught me: How to slow down and appreciate things. Well it has made us slow down wether we liked it or not !
23. Want to know a secret? One thing people say that gets under my skin is: “You have another appt or you need another day of PTO?!” But the BEST was (drumroll please) “Well, I am sure we have Drs. here that can help your son and you!”
(Sorry but you have to go to BIG hospitals in BIG cities for that kind of care because not one doc around here knows what Mito really is.)
24. But I love it when people: Do take the time to listen and I am really glad for friends who do “just get it”
25. My favorite motto, scripture, quote that gets me through tough times is: God grant me the serenity To accept the things I cannot change; Courage to change the things I can; And wisdom to know the difference.
26. When someone is diagnosed I’d like to tell them: To just stay positive. Whatever God you believe in has a reason and a plan for everything in life. Just trust in him/her and have faith.
27. Something that has surprised me about life with mito is: That I am a better person/mother for having gone through this and while I would not wish it on anyone I don’t think I would wish for my life to be any different either. This is what we were given. We are given this, accept it and move on. My son has taught me things I never knew about myself. I happy to be the mother of a special needs child.
28. The nicest thing someone did for me was: Everytime someone helps watch Robby so I can spend time with Madison. It really meansthe world to me in terms of the support from my family and friends!
29. I’m involved with Mitochondrial Disease Week because: I want to help change legislation and I want the world to know MITO is real and it is out there and it affects babies and adults alike.
30. The fact that you read this list makes me feel: Very happy, I hope you may now understand me a little more.