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, March 23, 2013

Not our Favorite Month

I don't want to say we are "doubting" our choices, but March and April are historically difficult on Abby. With the tree pollen maxing out and grass pollen trailing quickly- it sure does a number on her.

For as much as I want to follow our schedule of trying "new" foods, or at least going back and trying some she previously did poorly with, we are on hold.

For the most part, we are insanely positive about Abby's health. In my family we have some terribly sick folks over the generations live into their 80's - some were worse off then Abby. When I think about their lives and how they managed I often chalk it up to "ignorance is bliss." "Knowing" the enemy that hangs over our house usually empowers us, but when Abby is struggling any little doubts tend to float to the surface. At times I really have wished for any other path, for blind faith, for ignorance- but you just cannot go back- no matter how uncomfortable, Abby and I and family must press forward.

Another teen that reminds me of Abby in many ways has been in and out of the hospital, he is very unstable right now and I am terrified for him, his family. The reality of how "unknown" these disease process's are, make me on one hand so incredibly grateful that with extreme diligence to how sensitive Abby's body is we have tailored her diet and environment to prevent further stressors. It is also frightening that something could go wrong with Abby's body that is out of our control.

Guess we can call it a reality check. A good time to decide if we have made good decisions this past year is when she is feeling her worst.

Yes, we feel strongly we have made all the right decisions. We know for a fact that the changes we have made have done what no medicine or medical intervention could do. Every choice we make however has consequences, cause and effect. Sometimes even the right decisions can have a lofty price.

When I see her struggle to find the energy to wake up, to watch her struggle out of bed with pain written all over face, to know her kidneys are in horrid pain, to know her gut is not in the mood for anything new, when she gives me the nights headlines of struggling to breath, or odd tingles, pain, reactions.. I do wish with all my heart I knew more- that I had some book to refer to that had even half the answers. Despite her struggles she always manages to overcome. Even miserable she is more worried about the teen in the hospital then herself. I find her reassuring me that we need to just chill until the tree pollen slows.. that she has always had bad days or weeks and with time and patience she AlWAYS feels better.. anytime her body cuts her some slack she runs with it. Despite "seeing" her misery written on her face you would never know from her laugh or her words- tough kid.

Project Elimination worked because we tailored it to Abby's very specific needs. Each time I have to analyze new changes and make decisions on which direction we need to go next I feel paralyzed. I know without a doubt that the wrong food, temperature, activity level could cause her to slip- yet, it feels like I am playing that game show of having to pick between door 1, door 2, door 3 or door 4 - at best each decision is heavily laced with instinct. I would prefer picking based on facts- but for Abby we don't have enough facts yet to gamble on predictable outcomes.

Really what Abby is dealing with this month is nothing compared to so many. We aren't talking life and death, but we are talking about additional damage that adds up and slows the healing- it is so frustrating.

Today we are going to remind ourselves, March is just a bad month. Damage control. Most importantly when I compare what I see this year to how she was last year, or the year before? She looks great in comparison-

When you deal with the unknown, you cannot afford to have blind faith. You or your Dr. do not have a diagnostic and treatment guide book, there are no certain outcomes. Very much like when way way way back EVERYONE thought the world was flat- a few saw it differently-

No one then could believe the world was round just like no one believes there is a way right now to beat this - fact is there is a way to beat we just don't know what that is yet.


Anonymous said...

Thanks for this. We have had a bumpy few weeks with cold/flu...Something has raisedd its head right now:cold symptoms. He is growing too and teeth falling out. So I think it is about rest/recover. Plus grass pollen season is on the horizon..

Diane said...

The flu and colds are hitting late this year :-( and it seems everyone even those not allergic are bothered by the pollen this year- hoping yours and Abby all get back to moving forward soon! Thinking about you guys!

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