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, September 5, 2012

The Non-Compliant "Mom"

The more I talk to Mom's who have children with difficult to diagnose chronic illnesses the more I see that this group of Mom's rarely get the medical treatment we need either.

The other day I was reading a transcript of a Dr. Afrin presentation.

One of the comments he made really sank in, he said that often the patients he has quit reporting symptoms and health issues to their Drs. many years ago. Often because their primary Drs. either did not believe them, or could not find in lab work what was wrong. These patients just got tired of advocating for their health needs when they were met with constant resistance.

In my mid- late 20's my health started to really become an issue. At the end of the day, whether they believed me or not the lab work is what talked, and mine said I was pretty healthy. Since then I have tried a few half hearted attempts to bring up my own chronic issues. I get have gotten the following remarks/responses from Drs. and so have many of my Mom's-

1) Have you tried losing weight?

2) Maybe try a nap?

3) How about more fruit? (seriously!)

4) Try yoga, if that doesn't help your only option is anti depressants(a couple different Drs. in a couple different states!)

5) You are just stressed, just learn to relax.

6) Are you having martial issues? Lots of women feel like you do when their husbands aren't spending enough time with them(and Yes, this came from a female Dr. educated in the last 2 decades!)

7) Classic depression, you don't need lab work, it is all in your head.

8) Let's give it some time, that joint swelling will go away on it's own.

9) Does your husband think you have been unwell?

10) You just need a career, women are happier if they work(from the Dr. with no children)

As Mom's of children with difficult to diagnose health conditions we see how difficult it is to get our children the help they need, and when our issues aren't as bad we know there is no hope.

On the boards I have been shocked by the number of issues many of us refuse to go to the Dr. for treatment. Many of us apparently have experienced the same Drs. :-)

I know a few of us giggled about canceling Dr. appointments because we were "too sick" to go. I reckon, it gets to the point where you lose faith they can provide answers to what we live with daily, the flu, an infection can be ignored or treated for 60 bucks at the CVS quick stop.

Now, my oldest is having some issues- granted, not as bad as Abby- but bad enough. She doesn't know how to advocate for herself, since I never taught her. She figures the Dr. would just blow her off, because after all, Abby is so sick and we still get the blow off on occasion. I have not set a good example. After a year, she finally said something with our coaxing..

We actually do have a great family Dr. right now. But, I think we all want him to save his energy for Abby, we don't want to burden him with issues that may or may not show on labs, even a great Dr. has limited patience. Great Drs. have far more patients, and I worry they will burn out...if the rest of us can find our answers by googling, we are doing are part to put Abby first.. she is a most challenging final exam.

At the same time, all our efforts have not ferreted out much treatment for Abby, so why go to the Dr. to just have someone other then us acknowledge? We are realists around here, and over the years the stuff I suffer from clearly won't kill me, just makes me miserable.. I kind of see why so many people have issues with food or alcohol- self treatment for many with chronic issues that science hasn't caught up with yet.

I am learning that despite huge advances in medicine- somethings are just not treatable, or the treatment causes other issues. I am also learning that everyone of us has something we deal with, and what I deal with daily really is nothing compared to many. Many of the Mom's I speak with say the same things.

Funny thing, when we are with a specialist who "gets" it and wants to help our children we will pour out every symptom 12 generations back, ANYTHING to help our children- the minute you make us the patient? Nope, we are just fine.

So, are we really non-compliant Moms? No, just stronger, smarter and tougher. I am almost glad I have gotten the blow off so many times. I have no choice but to suck it up and keep moving, it may be miserable but what other options are there for anybody? No matter what anyone faces you can either deal with it and move forward, or sit and stew.

My one determination in this family legacy of misery, is for Abby and Sara to have a name for the enemy. I don't want them to feel they have suffer silently, like many of the Mom's do- fingers crossed, science catches up! Would be nice if my daughter's felt they can go to the Dr. when they are sick! LOL :-)


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