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.

Tuesday, February 11, 2014

Secondary,Secondary, Hunting for the Primary.

There are days I find this journey just exhausting.

Then there are the days when I just know we are going to figure Abby out.

18 years and still hunting.

The Immunologist is great. She has a great Mito Specialist. Abby's new Nephrologist is great.

We all love her family Dr.

Yet, still the Primary cause of all these secondary issues eludes us.

We are getting warmer though. Each time we find a great Dr. we can either confirm various issues or they will find another piece of the jigsaw puzzle. Soon, we will have enough pieces to put the puzzle together.

Yesterday we all felt validated. Her Immunologist is smart, like scary smart, he too see's what we see, it is all secondary. We aren't done hunting yet.

Next up, we need to find her a Rheumatologist, like super super smart. Great critical thinking. Thrives on answering out of the box riddles.. So far the Rheumys we have encountered for Abby just know Lupus or arthritis and the minute they see her records they run for the hills!

They really need an online "match" service for Drs. and patients. :-) Sure would make this journey gobs easier.

The secondary kidney disease, the secondary Mast dysfunction, the secondary mitochondrial depletion,the secondary immune issues..

What is the Primary?

Despite my frustration, I know Abby is the lucky one. We can at least control her symptoms with diet and environment. We will keep trying new things, keep reading, keep collecting more puzzle pieces. Right now the best thing Abby has going for her is how stubborn Derek and I can be. We won't give up. If it means cooking chickpea tofu for another 30 years? So be it.


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