WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Monday, March 5, 2012

Thank you Mito Bloggers!

During the past couple years I have spent a huge amount of time online trying to find information and make sense of what is going on with Abby.

I do enjoy the academic articles when I can find them free, UMDF and MitoAction both have a ton of information. However, the one resource that I have found priceless is when Mito Families so generously chose to share their journey. It is the day to day activities, the little things that tend to wear us down and tend to be overlooked by the medical world.

When Abby has some new issue like hibernation or neuropathy or a zillion other funky new symptoms,the first thing I do is search Mito Family blogs- knowing that other families have also experienced so many of the same day to day issues and are willing to share their tips, information and emotions so freely has been the key for us to learn to cope with Abby's Mito journey-

Abby and I often to talk about what I share in this blog. She often says she feels so unable to volunteer to do something to help with research, or fund raising because she just doesn't have the stamina. Abby says sharing her journey via this blog gives her a sense of giving back. It makes both of us feel good to write down and share her journey. It also helps us to track our progress on this journey. We can look back at past entries and know we are in a better place, or we have conquered various fears. We gauge our personal growth.

When Abby was really struggling with Dysautonomia symptoms,the Drs. were not a lot of help, all the Mito bloggers were a tremendous help and through them I knew what to do and that how we were feeling was normal.

When we have to met a new Dr. for the first time, and come home bummed that they totally were not a good fit(clueless,arrogant,idiot,sometimes nice but will admit she is out of their league), and we are so emotionally drained, it is the other Mito families who have been there done that and help us know that what we are feeling is normal.

When we realized Abby's kidneys were on the fritz, it was the kidney families and their blogs that reassured me and helped me understand what was going on with Abby's kidneys. They gave me hope, they helped me understand the emotions we were coping with were normal.

When we have dealt with poor digestion issues- and we found those blogs where people were fearless about talking about fatty stools, cramps,vomit and the other less then lovely things our bodies do, they were the ones that helped us not panic and removed the embarrassment of seeking help and speaking up.

There have been many days when our family has felt so bleak and depressed,knowing Abby's future must include dealing with a chronic illness lays heavy on my heart. So many mornings I will be reading my blogs and someone will share words of wisdom and hope and help us get to a more positive place- through their words and sharing they heal us.

I have really enjoyed sharing Abby's journey(and mine as her Mom). Much cheaper then therapy and so much easier.

We can only change ourselves and the world by learning, communicating and sharing.

Thank you again to all the fearless bloggers out there. When you share, you heal. When you share, I heal.

Keep sharing the good,the bad, the ugly.

A quick little update on Abby-

This weekend Abby was pretty tired, but yesterday she got dressed and we made her get out for a couple hours. She is headed toward another hibernation period-which I hate. She has had more neuropathy issues and some hypoglycemia that seems to strike without reason. Her GI issues are "holding". A few bad days, but as long as she avoids fats and fibers she is doing alright and maintaining her weight. Some pain always with eating anything, but Abby said she is getting used to it. This week is her scope and we are so hoping they find some garden variety issue that is simple to fix- Realistic? Probably not, but hey, hoping is better then worrying.


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