On this fifth day of National Health Blog Post Month, helath bloggers are prompted to consider 5 things that changed our lives. For better? For worse? What five things changed our lives as patients, caregivers, or Health Activists and how?
I could approach this list in many ways, but my list reflects the top 5 things that have influenced my approach to advocacy as a parent and patient.
As an example, I was told this fall that I couldn't register my son for kindergarten unless I either repeated some of his vaccines (I was told they were not recieved recently enough) or claimed religious exemption (though my son would not be allowed to attend school whenever certain illnesses were reported).
The school initially held their ground even after my position was upheld by the county and my doctor. Without showing me names, they showed me examples of other kids who also had to repeat the shots in question. I refused and by the end of the day had an apology and a registerd kindergartener (with only the appropriate number of vaccinations).
That might not have been the case, and several other health care situations may have ended differently for my family and I if not for the influence of the situations listed here.
#1: My sister's diabetes
She was 8 when she was brought to the ER with a blood glucose level of 1200. I am often told that this could not be the case. It was far higher than any number the hospital had seen and last rights were performed. My mother had been repeatedly told that it was the flu and to give it a few more days.
Lessons:
Miracles happen. Doctors and nurses are wrong. Trust yourself. Error on the side of your child's life.
#2: My daughter's myofibroblastic inflammatory pseudotumors at age 2
This one just can't be paired down.
Lessons:
Miracles happen. Doctors and nurses are wrong. Trust yourself. Error on the side of your child's life.
#3: My sister-in-law's advocacy for my grandmother's end of life
The details of the events aren't the heart of the lesson on this one. My sister in law learned a lot about the health care system when she lost her father and she did not take for granted that the hospital would be asking the right questions of the right people as it became clear that my grandmother was not going to survive her injuries from a horrific car crash. If she hadn't intervened, I believe a number of things would have gone worse than they needed to in my grandmother's last hours in this world.
Lessons:
The shoulds of a situation or an institution do not guarantee you squat. Once it is apparent that things are being done wrong, it is time to speak up. Ask questions at the very least, but don't stop there if more is needed. Don't get in the way of competent professionals, but don't let the comfort of strangers trump the rights or needs of you or your family when it counts. Even nice and good people can be wrong and can be uninformed. Malicious intent does not have to be present for harm to be caused. Be informed, be aware, be vocal.
#4: My Workplace Health Discrmination
Instead of trying to accomodate my disabilities, my employers demanded to know when they would be gone. They broke the law repeatedly in front of witnesses and in writing, but even still has taken over a year to even begin to get anywhere in the complaint process. For several months they destroyed my health. I had to remove myself physically to gain any protection. In the mean time they have destroyed my career. Nothing about my life is the same.
Lessons:
Well, I'll tell you when its over. In the mean time, can and should are very different things....a government agency shouldn't break the law in dealing with its employees, but it is ridiculous to say they "can't".
You can have the law on your side, but until you've employed an effective enforcement mechanism, that won't protect your health/life/career all by itself. If the system isn't working right, you can't just keep waiting for a different outcome. If you do so beyond a certain point, you share responsibility for the destruction. I am not responsible for the illegal behavior or the lying or the loss of my recovery and former life. But if I had remained accessible for further harm of the type I was experiencing, I would not have been doing the right thing by my kids/husband/self.
If it doesn't kill you it makes you stronger, but its a dam shame to die because you couldn't tell the difference.
#5: My daughter's ADHD diagnosis
The school intially went about testing her through very non-rigorous, poorly applied tests. We fought having her labeled. In the end, we were very poorly informed about ADHD and could have kept many of the tools my daughter needed most "off the table" as a child psychologist put it. Although the schools' methods were terrible, this only negated their results, not the fact that my daughter does have ADHD.
Lesson:
Don't assume you already know what you need to know if you haven't done the leg work yourself. Mainstream media soundbites do not count as credible information. Partial data and failing to ask the right questions rarely leads to the right conclusions. The number of children hastily diagnosed with and wrongly medicated for ADHD may, in fact, be high. This does not, however, speak to whether or not my daughter should be diagnosed, treated, or even medicated.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
I am also participating in my Bread and Roses Blog
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