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, May 22, 2013

Blog Post from a Primary Care Dr

Musings of a Distractible Mind is the name of his site.


His post- A Letter to Patients with Chronic Disease


A small cut and copy from his post-

Dear Patients:

You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.

You scare doctors.



You really have to read the full post- it is great.

Abby's issues are neither black nor white. She doesn't fit on any graph,software program or how-to diagnostic medical book. There isn't any known pattern, though she does have her very own pattern. She doesn't respond to anything in any predictable way. You and I both fear her because of that alone. Outside the box, no users manual,she is in the gray zone, the unknown. I can relate to you for fearing her and disliking me, I am as annoying and upsetting to some of you as some of you are to me.

I am guilty of coming on strong like a freight train when it comes to Abby, Derek and Abby refer to it as the "Data Dump" that first appointment they get the whole dump.. I wish they did not need to hear it, I certainly get tired of trying to share 18 years of history in 10 minutes, but they NEED to know why Abby says no thanks when they write a script. Or why we insist on a certain compound pharmacy, or why we won't take her to a certain practice or field of medicine.. I usually try to warn them when we walk in..I have met only 1 Dr. who went through her stack of records line by line and did not pick and chose what they wanted to see. I have met a couple who skimmed it and admitted they skimmed and actually asked for the data dump- those Drs. are keepers.

It has become the official test now- if they willingly make an appointment for Abby again after the mighty data dump(if you see them scuttle toward the door with a hand on the door, or stand up suddenly during the data dump,they get a big fail!), or acknowledge that this has to be a three way team work to care for Abby, that they are willing to accept every single order must be able to make it past Abby's and my lists of a 100 things to watch for before even looking at a food, water let alone medicine.. We know they are the type of Dr she needs.

No Dr. understands Abby. Heck I work 24/7 to keep her afloat and there is so much I don't understand.. all I ask is that they acknowledge that Abby presents a unique situation that may take a little out of the box thinking. That she has been through the ringer with diagnostics and isn't going to do any more to prove what we already know so they can see the same lab results on their letterhead..

We don't expect you to know what is really wrong with Abby, we are so past that.. What we do want is access to your brain and that load of terrific experience and knowledge. You know chemistry, I don't. You know know biology, I don't. All I know is Abby. Take a minute and listen. Take a minute and translate Mom talk to a language you understand.

You cannot fix her, and we have walked away from many appointments with no prescriptions- and been thrilled. We need to brainstorm. We need to hear that what we are doing makes sense at a science level. I need to know what will happen if I cannot find enough B12 for Abby, what symptoms may or may not be nutrition or something else. Abby and I find ourselves usually finding our solutions for her, but I am not a Dr., tell me when I may harm her,or what to change to prevent further damage, but don't assume your way is better-ever.

You are being graded by Abby and I. You get an A if you both listen and acknowledge something is very wrong. You get an A even if you don't have the answers, even if you don't have a referral to someone who might know,you get an A if we walk out without a script, you get an A for being human above all else.

I know you want to fix her. I know you don't want to tell me there isn't anything you can fix. You feel exactly the way I often do..

I think we have more in common then you think- I am often scared of Abby's health issues too.

5 comments:

Anonymous said...

Wow -- you've done it again! Hit the nail right on the head for me! I don't know why it helps me so much to have someone put into writing what I have felt or experienced, but it does! So, thank you again!!! I have read posts by people that I can relate to, but don't often come across someone to whom I can relate to about so many aspects of our situation as you -- especially the combo of a medical mystery child AND one with unique sensitivities.

I can't wait to go and read the rest of that doctor's post. Wow! My Mom has often said that to me: "You scare them."!

Reagan Leigh said...

All I want is a doctor that WANTS to help my daughter! I understand that most if not all, won't be able to...but I don't want to hear about how she "looks" good, and how she's better off than many kids with mito (because she doesn't see her at her worst...when she's screaming out in pain, unable to sit still for even a second)!!! We do have a wonderful pediatrician who really cares...and even our palliative care doctor (that almost killed her by overdosing her) genuinely cares and WANTS to help! Is that too much to ask??

Diane said...

If I had a nickel for every time a Dr. said "she cannot have Mito, she looks so good"... I would be RICH...

What gets me, are the same Drs. telling you that about Regan and the line of BS to us about Abby, are the same ones who write the literature that talks about how there is such a variety of symptoms, and severity and that patients can be great one minute and the next need the hospital.. but, they still give us the "wow, she looks great"...
Clearly Reagan and Abby have very different onsets, but funny that they give both of us similar speeches when we beg for help?

No it is not too much to ask. Especially when many of the Drs. that Mito children see volunteer and pick to work with Mito kids- not like we are forcing them- right?

Hugs and sending a prayer that Reagan is more comfortable.. surely they can find a food that she can be pain free and maintain her health- big huge hugs from both Abby and I...

Susan Schreer Davis said...

Love this!! Thanks!!

Laura said...

Thanks!! Just saw this post. Will looks healthy because we WORK at it. He has always been big for his age and we have fought school and others who think just because he is big he should be more mature. Add in doctors who won't look beyond the organ they specialize in, won't acknowledge that mito dysfucntion, while not as devastating as mito disease, is real and affects him significantly. We currently have a great neuro ( Dr. Frye) and a fantastic Family Doc ( whom I think I intimidate - even though I try not to ) that really tries to help. We are trying a new pulmo in a couple of weeks - fingers crossed!! I just want a doc to listen and think and try to use his/her knowledge to help us. Don;t want what works for ewverybody else, because it probably won't work or will cause problems for us.

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