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.

Saturday, September 15, 2012

Mito Awareness, Corn and Mast

I don't have any new recipes or rants today. :-)

Just some musings.

Tomorrow kicks off Mitochondrial Disease Awareness Week. I feel like I have not learned much between last year and now on the Mitochondrial front, except that my heart has been crushed this year watching so many children and adults suffer- really really suffer from this disease. For some I have watched a slow progression, some have been fighting day to day to just stay alive. Some like Abby have found ways to stabilize or even bounce. My emotions are all over the board. From hope to grief, to determination that we can manage this process. I admit, likely some denial, but the placebo effect has been working much better then "expecting" her to progress. The mind is truly a powerful thing.

I have been fortunate to get to know a lot of other families who are on a similar journey as Abby. They have opened my eyes and given me hope and helped me realize there is usually more then one way to skin the kitty!.

We learned that meds (Miralax especially damaging)and the cocktail or any medical interventions popular with the "Mito Protocol" were not for Abby. We learned less is more for Abby. We learned that Abby's extreme sensitivities to food can be flipped to our advantage. Once we found the foods Abby tolerates, we pick and chose the foods with the most value. You can get the vitamins and minerals you need without fortified foods or vitamins. Despite what our Government and commercial food producers would have you believe.

Many ups and downs this year, but we have ended the year with hope and stability. I wonder what I will be reporting at the end of next year?

Still exploring Mast cell activation syndrome. Everything we do, we do slowly. Abby just now seems more stable after 2 appointments in one week. While we work through it we stick to a low histamine diet and pay attention to triggers. I really credit the Mast cell population and their infinite knowledge for Abby's more stable position. Removing allergens,intolerances, triggers, histamines.. has been key this year.

Corn- if there was ever an enemy in our home it would be corn. We feel like we have removed a good 80-5 percent of corn from our home, and considering it is in everything from vitamins, to fortified foods( most rice, breads, milk, etc) and even water we feel we have done a good job, though still room to improve. Interestingly, I am finding that more and more Mito families are finding that corn is causing havoc in their mito family members too. It appears that all the supplemental formula's are tainted with corn(the vitamins, etc). Hoping by next year some Pharmaceutical companies will figure out they could help more patients by scrubbing corn from their products, and we are talking completely! The parts per million rule the Gov set up just doesn't work for our sensitive orchids.

The mast cell connection is developing. I cannot count the number of families who are Mito and mast patients. Or are POTS-Dysautonomia patients and Mast- or EDS, POTS and Mast. Dr. Theo found that Mast cells can cause mitochondrial damage, I am interested to see if the research will cement these connections. I have had the joy to watch a couple Mito patients treat the Mast issue and feel better then they have in a long time. Also a few Mito Specialists are listening and paying attention.

So, maybe I do know more this year. I know that even with the same diagnosis, treatment is individual to the extreme. There is no Mito guide or protocol that fits all or even some. I have recognized that the diagnosis can cause more damage then good. I have seen that despite the huge population of patients who have mitochondrial related disorders, there is ZERO government support(well not zero, but very very low). I have learned that even without government support there are thousands of researchers out there that are working each and everyday to find the connections for us. One day during Mitochondrial Disease Awareness week, and hopefully soon, we will see the White House light up green- we can hope right?

The best part of this year for us is the recognition that because they don't know much about Mito, there are things we can do. Small changes in our life have given Abby stability. Being sensitive to her needs have reduced the flares. Living differently to protect her health isn't bad. The whole being normal thing? Way way over rated. Abby said she would rather have 20 years as a hermit feeling better then 1 year of normal and destroying her health. Derek and I agree.

Wear something green this week- think about all the Mito patients out there holed up in their homes, or struggling to make it through each day. Thank the researchers who are working hard to figure out why our mitochondria are getting sick- and mostly, thank the families who so willingly share what works for them, and help you figure out what works for you.


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