I know that for some patients medical interventions are life or death, but for a lot of medical interventions? You have a choice.
When I first realized how much damage the various common Mito treatments were doing to Abby, I panicked! I mean, if you have Mito you HAVE to see Drs all the time,you have to HAVE a Dr. to check every system just in case before symptoms arise, you HAVE to have a zillion treatments or you will die, Right?
After all, all the other Mito families do tubes,oxygen,vitamins, medications,ports,OT,PT,Speech, monthly visits with Specialists with Specialities I cannot pronounce half the time. Some of the interventions include major surgical interventions which means hospitals(germs),incisions(germs),huge amounts of energy to recovery, medications.
I thought for sure Abby was screwed. Without all those Drs. visits, without all the interventions she was going to die.
To our surprise and delight, she thrived without ANY interventions.
Less visits to the Specialists meant less exposure to germs.
Less visits to the Specialists meant less stress.
Less visits to the Specialists meant less energy used unwisely.
Less visits to the Specialists meant less copays which allowed us to improve her diet and environment.
Less visits to the Specialist meant less drama.
Less vistits to specialists gave me more time to cook carefully for her.
Some would say Abby is unusual. Some would say Abby got lucky. What if there are more like Abby, who are needlessly being treated? What if there are others who are progressing from the treatments and not the disease?
On the other side of this are patients like Justina. Justina and many like her THRIVE with the interventions. The medical interventions allow them to live far more fully and help them clearly maintain their health.
The very fact that so many Drs today feel there is only "1 way" or 1 set of treatments per disease is incredibly concerning.
Fact is, even with common diseases there are the "common" treatments and then there are those who need something different where the basic protocol simply doesn't work.
Patients know their bodies. They should have a choice. Patients are humans with very unique lives and unique bodies.
Between Abby's mad crazy reactions and her unique health needs we have found the less interventions the better.
For some those interventions are key to living a fuller and healthier life.
No Dr. should take that choice away from a family. No Dr. should be so poorly educated to think that their way is the only way.
I have noticed recently that the trend is for some Dr.s now feel it is their job to make personal decisions for their patients. From immunizations to mind altering medications and if we disagree with the treatment? They feel we are abusing our children. When the patients disagree? They take them to court and force their opinions on them. That is medical abuse. They are there to provide their medical expertise to their patients, not take custody of their patients rights.
Abby has some truly terrific Drs. They provide her the advice and expertise for her to make educated decisions about her body. None make decisions for her. They make sure she is educated enough to understand the impacts of her decisions. None tell her she shouldn't see other Drs. None tell her how to live. They realize their part in her life and don't get pushy,they stick to medicine. We don't always follow their recommendations. At times I am sure we/Abby have opted to go against their opinion. They accept it is Abby's choice,not theirs. Sometimes they want to know why we did not follow their medical advice. Usually, so they can understand who Abby is and what direction she is going in order for them to provide more tailored medical care that works for Abby. They are the "good" Drs. All have expressed an appreciation that at the end of the day, It is Abby's choice.
So tube or no tube, weekly Drs visits or none- it is the family/patients choice how to live.
You do have a choice, but we are watching our rights as parents erode. No parent should fear disagreeing with a Dr. but most do now.
Maybe I should have titled this "You SHOULD have a choice." Some Drs. are working toward taking our choices away, while others work on being better Drs.
You can pick your Drs. You might have to travel. You might have to move. But the right Drs are out there.
You have a choice.