Doctors are not All-powerful

       So it has been a long time since I have posted on here. With that said I am going to try and post an update on my circumstances and make my point all in one. Back in March I was finally given my diagnosis after a trip to Cincinnati Children's Hopsital. I have Postural Orthostatic Tachycardia Syndrome or POTS for short. This is a form of Dysautonomia, or dysfunction of the Autonomic Nervous System (ANS). The ANS is the nervous system that controls everything that you don't consciously think about; your heart rate, blood pressure, digestion, body temperature and many other things are regulated by your ANS. This is what causes my wide range of symptoms because in layman's terms my nervous system "Short Circuits" causing me to have a high or erratic heart rate, low blood pressure, severe nausea/vomiting, random fevers, and all of my other symptoms. Right now I am back on 24/7 tube feeds to my intestines and am on 13 different medications to try and treat my symptoms.
       Now if you read my last sentence again you will notice I said that all of my medications are  just to try and treat my symptoms, this is the part of this post that is going to go along with my post's title. One would think having a name to call the disease that has torn my body apart would make treatment clear, but that is where one would be wrong. Knowing what to call my illness makes it harder to treat. As only select hospitals in the United States treat Dysautonomia, out of that list of hospitals very few treat children under the age of 18. Right now my family and doctors are trying to get into contact with the hospitals that treat children but so far we haven't had much luck one is on a six month wait for a nurse and a year wait for a doctor, another said my home hospital should know how to treat me when they don't, and the third we are waiting to hear from.
      While we are waiting on the hospitals that specialize in Dysautonomia to get into contact with us all I have are my doctors at Cincinnati Children's Hospital. Don't get me wrong the doctors in Cincinnati are outstanding and are the doctors I probably owe my life to, but they are not specialized enough in Dysautonomia to know how to treat me. Even though they are some of the top pediatric doctors in the country (number 3 in GI and number 9 in cardiology) they are at a loss when it comes to what to do about my constant headache and relentless nausea and this is not for a lack of effort. It comes from the fact that POTS is an illness that varies from person to person and that they are not specialists in that area of medicine.
       A lot of the time we, as human beings, want to say that because this doctor got his medical degree he should be able to make us or our loved one's comfortable, but this is just not the case. Doctors are not gods, they only have the resources given to them at their disposal, and in the grand scheme of things disease is more powerful than these resources. Pain is stronger than the strongest pain medication known to man, because it is a sign that something is wrong and being such must be felt. Nausea is stronger than all of the nausea drugs stocked in a pharmacy, because it is the body's way of getting rid of things it sees as potentially harmful, even if they aren't. Disease will always find away around medical treatment, because without disease there would be no need for doctors.
      With that said I don't mean to crush your sense of hope, because that is not what this post is about. What this post is about is understanding that there are limits to medicine, and as much as we don't like these limits we have to eventually accept them. But we don't have to accept them forever because the medical world is always turning, new advancements come about everyday and I fully believe that someday it will be my day. My day for the suffering to end, my day to finally be out of pain, my day to eat a full meal, just my day. These days may not all come at once but they will come. They may come from being sent to another hospital, they may come from right here with my home doctors, but until that day comes I must learn to stand among those fighting and fight this battle as if my life depends on it, because in reality it actually might.