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.

Friday, February 17, 2012

Stepping back a Notch.

It is becoming clear to us we have two paths. 1) We can enter the world of Mito Drs. and generally a more aggressive treatment style. 2)Or stick to what we have always done and consult now and then with a Mito Dr. to avoid some fumbles.


Yesterday Abby looked the best she has looked in months. The feelings it inspired in me were frightening. I was able to believe for longer then a minute that somehow she was diagnosed wrong, and that whatever plagued her is over, done and gone. You would think a year of watching her crash, the Dr. visits, would have allowed me to fully accept that she has a major disease that at any point could overwhelm her.

By the afternoon, I realized my emotions were probably off base, just a tiny bit! :-)


What it did do is force me to recognize since finding out about this diagnosis, we only allow ourselves to live after I see her face in the morning and am reassured nothing is worse. This has been going on for months and I am tired of obsessing.


The ups and downs in her health are the worst part. Just when I have prepared myself that things are getting bad, she perks up. Granted each one of these cycles of being really sick seem to last longer and do more damage each time- but as we have seen this week she is still able to "come out of it" despite the longer periods of flare. I also recognize that she seems to only stay out of a flare for a few short sweet days, and maybe weeks before nose diving again..but I am still hoping we can head back to the cycle of a few bad weeks followed by months of balance..instead of days.

Admittedly the one aspect that drives me batty about this disease is not knowing enough about it. If it weren't for the other Mito parents I doubt I would even know how to spell Mito yet! LOL I am kind of a of a big picture kind of person, and so far there is no big picture for Abby.

What I have learned is that we could do some interventions. Or we can chose to avoid them. I hate to say it, but when I look at the kids who have had the interventions they don't always work to stop progression. Actually, a lot of the time they don't. So why do them? I know for some it is a life or death thing, or worth trying and we may reach that point with Abby, but not yet.

This last flare taught me a lot. 1)Her flares are getting longer and worse. 2)she gets some new issues with each flare. This round was the GI(we still suspect pancreas despite Drs. disagreeing and thinking more "mito"), we see the intention tremors(I have had since I was 14 and no harm no foul), and we find that when she flares all her other issues are much worse. 3) We still do not know what it is that stops a flare and stabilizes her.

I also learned that she may be great today, and crashing hard next week. Each cycle the damage becomes more dramatic,thus weakening her further and when the next flare hits her body just gets more and more beaten down..

If even changing brands of a vitamin can cause a crash in Abby, what would be the impact of some of the dramatic interventions? Despite helping in one area I know they would cause harm in another. The intention is good, but the impact is not being considered.

At the end of the day, I am not ready to head down the aggressive Mito path with her, and neither is she. We are going to hold on to our placebo methods for as long as humanly possible. If the Dr.s Denial of anything wrong with Abby for years and years forced us to figure her out on our own all these years, then surely our methods are as good as theirs and will carry her a little bit longer.

What do you want to bet, sooner then I would like to admit, I will writing on this blog that she is flared up again, and I have changed my mind again and see it is time for intervention. But for today- less is more.

This disease is like owning beach front property. The ocean is your foe and the whole reason you live on the Beach. Every year you watch the tides eat away at your property. You dump pilings,concrete,sand in front of your property and then watch over the next year as the tides slowly steal that work away.. Year after year you continue to build the barriers. You read books about building barriers,you consult with neighbors, engineers,you start saving all your money on things to block the ocean-your days and nights are consumed with beating back the tides. You pay more in taxes each year for less beach..but after a few years your realize you cannot fight the ocean,tides, gravity.. Mother Nature ALWAYS wins. You can chose to appreciate the beauty that drew you there and accept the price or you can spend all your time trying to engineer the blockage of pilings to protect what is yours.. I think the smartest of us put up the pilings each year but don't get to upset when the ocean has a greedy year.. you just accept that the ocean is bigger then you and work with what is left. You enjoy what you have and hope that some smart engineer will figure out how to build a tide proof barrier one day that will protect what is yours.

2 comments:

The Nearly Med Student said...

How does Abby cope with these ups and downs? It must be very frustrating to not know how she will feel a week, month or year from now...

Diane said...

Nearly Med Student- You nailed the worst part of Mito for our family- the up's and downs..and never knowing what is coming at you. Abby generally does better then I do adjusting to the ups and downs. I think being 16 is an advantage- at 16 I remember living for the moment, so I think she enjoys her good days far more then I do. Abby has told us how she pities those folks with Mito that get it suddenly when they are older. She says it must be so much harder for them to have been healthy and then lost that health-where for her she has never felt truly healthy or normal, so the loss is not as dramatic.. She runs with her good days and is just grateful to be able to be comfortable for awhile- while I look at her good days and only see how bad the next spell of bad days will be after such a good day. I think I should be taking her lead- Thanks for reading,learning and listening- I would love to think that reading about Abby might help form your opinions when you are a Dr :-)

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