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, May 23, 2017

Still Stable.



You almost hate to celebrate when you have these lengthening periods of stability, and I am tentative about Abby and I claiming responsiblity for it, but could it be that the path we picked was the right one? Or just dumb luck?

Don't get me wrong, Abby hasn't been cured.


Showering is an effort and it is a day of rest afterwards, but a few years ago she couldn't. Or if she did it would send her into a month long progression or flare or whatever we call it that generally left her worse off then before.

Abby still lives in Pj's and other easy to change items.

I still cook and clean for Abby.

She still gets some wicked and weird new symptoms and has weeks where getting even out of bed is equivalent to running a marathon..admittedly those flares still absolutely terrify us, but with a careful choice in how she uses her energy she comes back to baseline.

She isn't getting worse. Which makes not getting any better a lot easier to swallow.


So we celebrate.


We know what she and we have to do to keep her stable, and every effort is well worth it.

It is certainly a different kind of life. Homebound. Weird food. Avoiding mito toxins like the plague. Saving energy and knowing when the gas tank is just too low to brush her own hair, but the careful monitoring and balancing has lead to stable.


Yet there is always that question of quality of life.

Abby is the first one to tell you that a life at home, safe though different beats the progression that comes with trying to be "normal" every single time, and we agree.

Over the past few years I suspect I have grieved more for the life she could have had more then she ever did. She points out all the time that you cannot miss what you haven't had. Abby reminds me of how sick and miserable and terrified she was when she was pushing and causing further progression. I agree, watching her deteriorate trying to be "normal" was probably the most frightening and stressful period in our families life.

I often feel as if we have to "justify" this odd path we have chosen, and I know I don't. If anything the fact that she has done so much better with this life style vs trying to be "normal" which includes increasing medical interventions needed aka progression should be enough to feel great about the decision, but there is such societal pressure to conform to a certain life style. American's are go getters! Drs. encourage living fully and pushing for "normal" and if that means more medical care and a lack of stability that is okay, because chasing "normal" is the priority.

We disagree. Normal just isn't worth the progression.

For Abby, for us; "Quality equals Quantity. "

Abby hasn't touched a medication or a vitamin in a few years. She has lost a few more foods, but also gained a few. I grind, I cook, I mix and blend to make everything from scratch still and glad to keep doing it to maintain stable because realistically there are days and weeks and even months where she crawls out of bed to eat and heads back to her bed.

What makes it all worth it is seeing her smile more, stay healthier, recover more quickly. When we started this journey we really did not understand the words "baseline" or "stable" and why patients and Drs alike put such a focus on them. Now we understand.

So we will keep on keeping on. Raising chickens, turkeys and gardening. Fighting fire ants with boiling water instead of chemicals(no lie, the boiling water isn't as good as the chemicals!). Watching out for copperheads, spiders and other things that either are dangerous or make us scream! Most importantly we enjoy each day and find the joy. To our continued surprise you don't need "normal" to be happy. Happiness, joy, normal, and success are all defined by the individual.

Admittedly, I keep reading journals and articles hoping for a cure and maybe one day there will be one. For the time being we are loving "stable" and our version of normal.





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