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.

Thursday, June 5, 2014

Just Wearing Down but Just as Determined.

Long week.

I won't rehash the latest appointment for Abby, but it will lead to further testing.


After the appointment Monday we came home and were simply done. Not really so much a physical fatigue, more just so tired of falling down and trying to stand back. It seemed so hopeless that we were ever going to figure out what is truly wrong with Abby. Everything but nothing is tough to define.


In many ways I have become part of the barrier to Abby getting the needed diagnostics.


I am anxious, confrontational, defiant with Drs at this point after years of appointments where it was clear they were unable or unwilling to help her. Then of course my Mighty Data Dump where I see their eye's glazing over or I know they think Abby or I are either making things up or dramatic or something on the nutty spectrum. The data dump is my last defense. I throw out every single symptom over 19 years at rapid fire speed.. the well meaning Dr begins to retreat- of course they do, data dumping is not productive but more like a last ditch survival mode where I know the boat is sinking and trying something even something we logically know won't help becomes more an action of instinct.


Some appointments I just want to strangle Derek. At home, at work he is a leader, he truly is brilliant and honestly far more likable and well spoken then I am. In every environment that we have conquered together he leads, he always knows how to shutdown my data dump- that is except in a Drs. appointment! I know I come across as domineering and difficult(I can be!)but for some reason that is intensified in a Drs. office. Derek seems powerless and I am still not sure what happens that we have developed these odd coping skills in the Drs. office. I think maybe because the majority of the appointments when she was little I dealt with alone. It would be beneficial for him to use his excellent leadership and PC skills but he folds to my panic every single time! :-) I think it is simply my Mom instincts in overdrive- a storm that builds and no one can shutdown.


Over the years I have felt so vulnerable in trying to support Abby and help her. I cannot count the times Drs. blew off her symptoms, or clearly disregarded the impact. They have minimized, ignored, brushed aside and simply disbelieved. Too many times over the years I am the ONLY ONE who believed Abby. I have dealt with feeling as though I have failed her. Though I believe her and see her suffering clearly, because of my inability to play well with others I know her/our concerns have not always gotten her the care she needs.


Granted, "It is What it Is" still holds true for this journey. She is truly unique, I am weird and it is has become the perfect storm. I cannot go back and redo what has already been done.

Derek and I think though that perhaps we/she were heard this last appt. Or maybe humored? Frankly I don't care if it gives us another piece of the puzzle, if it might give us a better idea on how to do our best for Abby, it makes the appointment of value and worth it.

Derek and I are both very "DIY" kind of people. We love figuring out how to make things ourselves. We delight in discovering how to make, build or create what we visualize. From plumbing to cooking we enjoy the discovery. Both of us enjoy fixing and restoring. We have a type of confidence that allows us to be confident and often fearless that anything we could possibly attempt in this life is all something we can do if we are willing to do the research, to study, to experiment and work hard. I guess you could say we are "self-taught". We love the adventure of figuring out all the challenges in our life. Often our solutions are very different from what were the traditional solutions and that makes us even happier.

We cannot "DIY" Abby though and it is the most frustrating thing we have ever faced. We feel so very dependent on others to help her and that is just not something we deal with well. We are fiercely independent. Trying to find Drs. who have the tools we don't have to DIY Abby has become the most challenging aspect of our lives together. We don't trust, we don't have faith at this point. This leads to anger and frustration for a long time for us. Thankfully that has tempered in the last couple years. We have finally cut ourselves some slack that we have not "failed" Abby because we haven't figured her out yet. We certainly get an A for effort. Plus despite our DIY approach to everything in our lives, Medicine is NOT a DIY project. In general, creative problem solving is not part of the formula of healthcare. I guess we just keep hoping we will run into that 1 kindred spirit in the medical profession, the maverick,the thinker, the out of the box thinker, the black sheep. We have found a few over the years and those are the ones who have helped the most. Fact is, Abby is one of a kind, there is not diagnostic criteria that fits her.

So not sure if we accomplished much at this last appointment. It did open the door to new testing which I guess I should call a success. Maybe I am just getting old, but the weight that I carry seems to only get heavier. Maybe I understand better how my own failings perhaps have created delay's in caring for Abby, maybe I am just realizing this might not be some odd easy fix DIY project for the right Dr. Just tuckered.

Maybe being tuckered will slow my data dump? Always a bright side to everything.

Buckling our seat belts, gritting our teeth and hoping the Drs. are willing to do the same.

Despite my slow self awareness, and learned patience, my gut still says, "you need to keep looking."

So far my gut has never lead me astray. So if Abby is ready, here we go.

4 comments:

Reagan Leigh said...

My husband is the exact same way at Drs appts! I do all of the talking and he rarely speaks up about anything! It can be very frustrating!

Diane said...

Glad I am not alone on that! :-) I wonder why they get so tongue tied in the Drs office? Sigh.

Anonymous said...

Am hearing you.....just went to another round of specialists....and found more of what not the problem is....but nothing of what is... I keep telling myself...that is why they call it the "practice" of medicine....cuz they really don't have a clue!!!

Diane said...

It is exhausting isn't it? All I can do is keep the faith that our persistence will pay off. :-) Hugs!

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