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.

Wednesday, February 29, 2012

New symptom- Neuropathy.

Not sure if it is the Spring weather, my diet, or just good luck, but we have had a "happy" week. Maybe Happy isn't the right word, but feeling grounded and enjoying the small things again. We all feel like the Black Cloud that sat over us all winter is blowing past and blue skies are here again.

That doesn't mean Abby is any better, but I think we just all finally got through the anger,grief,mourning, and all the other emotions that jumped us last year.

I think I realized we are all in a better place when Abby started talking about "pins and needles" in her legs, arms and feet. First, I did not panic. I went back to the "she always has odd symptoms, no worry until it is consistent. Now it has been a few days and still has the pins and needles. Again, no panic. No flying to google it or flipping through Dr. numbers to figure out which one should have a clue and be able to figure it out. We know she has low B levels so the bet is her levels have dropped enough to cause the Neuropathy. Fact is she cannot take it by mouth as it destroys her gut(24 hour of misery from one tiny gummy!) Plus, she has the scope next week, odds are depending on what they find will decide how to get her nutrition back up- then we can decide which Dr. will help her get her B back up. No worries Right?

So much could go wrong, but ya know, I just seem to have a little of my stubborn faith back about this stuff. Abby is a kaleidoscope of odd and rotating symptoms- they come and go. All of them probably mean something but if doesn't cause a trip to the ER it is enough to add to the list on fridge of "Remember to ask at the next Dr. appt." list.

I know I have asked before about B12 deficiency and the claim was she could not be since she was not anemic- Ha- they still don't get that Abby's body doesn't follow any medical guidelines- it is truly almost it's own unique organism and I think of learning the ropes of how to care for Abby, like learning how to care for an alien! :-) Just because her body does things so completely differently then the normal, doesn't mean it is doomed to fail, just means she needs different things to maximize her health.

We are back to the space of " Abby is delicate, different" instead of "Abby's sick." Works much better for all of us, including Abby.

"Different" allows us to creative problem solve, to think outside the box- to use the Motto-Where there is a will, there is a way.
"Sick" is like a brick wall that only Drs. know how to get through-

I like Different and Delicate way better!

Admittedly, I checked out of all the MitoWorld support groups and lists mostly. It is hard to explain but for as lonely as I felt before I found the groups I nearly felt as lonely when participating in the groups. The people are all loving, and kind but my unique perspectives don't really fit. These families often are in the front line of this disease day in and day out. They have dealt with all the bad medicine, many with far more significant disease process, I should feel comfortable, but I did not.

Fact is, I don't like many Drs. Fact is, I don't trust them. Fact is, Drs. see a sick kid when they look at Abby, I just see a high end sports car that needs a little tweaking to keep her running- she is specially made and needs special fuel.. On the days we have all tweaked our little sports car just right, boy does she reward us with a marvelous day of unbelievable performance. But like all high end sports cars, she spends a lot of time in the shop to get those once in a while peak performance days. We are okay with that, in fact I am very proud to be Mom to such a unique kid aka sports car.


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