Be Your Own Health Advocate
Updated: Jan 19, 2021
If there is one thing I learned from all that my family went through when my oldest daughter sustained three traumatic brain injuries (all in just a 13-month period), it is to be your own advocate. If I had only done what the doctors told me to do for her, she would have stayed on some heavy-duty meds that had bad side effects and she would have seen a psychiatrist who more than likely would have put her on more medications.
If we had done this instead of continuing to search for alternatives that may help her (methods that were more non-toxic and didn’t require further medications), she may not have experienced the pretty remarkable recovery she had. As a result of all her injuries, she ended up with the mentality of what I call a 5-year old. We didn’t know if she would recover from this or if this was the new version of our daughter.
You see, the doctors told me my daughter showed abnormal symptoms of brain injury and she needed a psychiatrist. Of course, they didn’t live with her to understand that there was no way she was “faking” her pain nor any of the other symptoms of brain injury she was showing, such as hallucinations, light and noise sensitivities, round-the-clock pain and migraine-like headaches, just to name a few.
I decided from that point, I would start researching other alternatives for my daughter. The doctors locally had discharged her from care, meaning, we were left “out in the cold” with nowhere else to turn. It was a very scary time and we were unsure of what we would do next.
Thankfully, I found a Neuropsychologist out of town that saw my daughter and determined that she absolutely was showing signs of brain injury and she didn’t need a psychiatrist. I am so glad I trusted my gut and continued to look for other alternatives for her!
This doctor not only spent 5 hours with us in the first appointment, but recommended her see a NeuroOptometrist, who prescribed vision therapy and prism glasses that helped her eyes work together better.
While this was going on, I continued to look into other alternative therapies for her. As good as the NeuroPsychologist was, my daughter was still in pain and on medications that really didn’t seem to help. Luckily, I found out about low level laser therapy. There was a doctor out of town that had this, so I made an appointment and we went to see him.
My daughter is 5’4” and her weight had gone down to 100 lbs. She had lost her sense of taste, and it was very difficult to find things she would eat. After just two sessions with the red light therapy (low level laser therapy just like the equipment at Total You Health), my daughter not only told me what she wanted to eat but where she wanted to get it from (Panera). Of course we went straight there!
I was so happy! Not only was she eating, but we were able to sit outside. The reason this was a big deal is because she still had major light sensitivity and wore her sunglasses all the time, even indoors. For her to sit outside in the middle of the summer in the middle of the day (still with sunglasses) was HUGE! I immediately called my husband and told him about our success.
We knew this was a therapy she would need for perhaps a long time. The doctor where we found this therapy was 2 hours away from our home – one-way. Therefore, I approached him about writing a prescription so that we could purchase this equipment and treat our
daughter at home.
It turns out, he was willing to do this, and we soon had the equipment. I applied the therapy on my daughter, and we continued to see more success. She was able to be home-schooled (she was not able to return to her high school because of the light and noise sensitivities and her need to rest during the day). She ended up graduating on time and got accepted into her college of choice, Virginia Tech.
This created some rather big challenges for my daughter. I certainly knew she was a fighter and could do anything she set her mind to. However, I did not think she was quite ready to go to college. Her Neuropsychologist told me that she really needed to go for social reasons, for healing, and more. Her brain needed to continue to make connections again since some of these were damaged in the accidents. He said all the different scenarios – meeting new people, having new experiences, challenging academics – were all important for her brain to make these connections again.
So, she went, but it was not without a great deal of struggle. Though she had accommodations from the Services of Students with Disabilities department, she was accepted into a challenging program - the Human Nutrition, Foods and Exercise program, a pre-med major. There were multiple times during her freshman year that I thought she would withdraw and come home.
True to her nature, she stuck it out and made it through the year. Her other years had their own struggles, but she graduated, on time, with her degree. Less than a year later, she applied to Physician Assistant’s school, got accepted to several, and picked one in the same town as her NeuroPsychologist’s office.
At the time of this writing, my daughter has only one more semester of PA school to get through and then she has about 15 months of different rotations to go through. After that, she will have completed her designation. She is so well suited for this type of job – she absolutely LOVES it and has a very unique perspective so she will be able to relate well to her hurt clients. We are not sure what area she will want to focus in , but I know beyond a shadow of a doubt, she has found something she is passionate about and will be very happy in this field.
So, I told you all this story so you would have an example of why it is important to be your own advocate. Had I not continued to search for alternatives for my daughter, her outcome may have been totally different. The doctors who discharged her didn’t think her symptoms had to do with brain injury, so therefore, she may not have been treated for them and may not have had the successful recovery that she did.
Here is a link to a great article that talks about how our conventional model of care compares to a continuity of care model. In the article, Dr. Victoria Sweet says, “Whatever form of health care the future may take, don’t put all the responsibility on our doctors. Instead, we should each strive to be the primary advocate for our own well-being”.
This means, according to Sweet, that we get enough sleep, eat right, and exercise. She also says to avoid the doctor if you can. Basically, she suggests doing the things that keep you healthy. I agree with Dr. Sweet, you have to be your own advocate because, like the article discusses, in our current healthcare structure, doctors don’t have the time to spend with you to determine what is wrong.
So again, the best advice I can give you is to do what it takes to take care of yourself. Be your own health advocate and trust your instincts! Try to do as much without chemicals as you can because in the long run, these just mask the symptom and don’t get to the root cause of your issues.
Here is a good list of signs and symptoms of Traumatic Brain Injury - https://www.brainline.org/article/traumatic-brain-injury-signs-and-symptoms
Here are also some good facts to know about head injuries - https://www.medicinenet.com/head_injury/article.htm
Resources (in or near Roanoke) to help with those with brain injuries and their caretakers - https://www.biausa.org/find-bia/virginia and https://bisswva.org/
Outside of the Roanoke area, look up Brain Injury Association in your state - https://www.biausa.org/find-bia. You can also look up local support groups
If you or someone you know has a brain injury, please don’t hesitate to reach out for help. Brain injury can be very hard on the person and everyone surrounding him/her. It can be a very isolating time, so please reach out for help and do what you can to talk to others who are going through or have traveled this recovery road before you. And again, learn all you can about brain injury so you can be your own (or a loved one’s) health advocate.