invisible disease

This is a post I wrote just as I was really learning to claim my role as an advocate for myself. It was a turning point for me, in truly learning to trust my body and not necessarily what I was told about my body. It was when I decided to trust MYSELF, and to speak up when I felt or knew something was wrong.

This experience with this nightmare provider was someone I should have been able to trust. It turns out he took advantage of that trust. This experience brought me to a painful realization that not all doctors respect the “do no harm” oath.

In fact, if left unchecked, those who don’t value that oath, can cause a great deal of additional irreparable harm to their patients, can absolutely cause medical PTSD, and change the course of a patients care for the worse. I share this again as it should not be forgotten.

Find your voice and speak up for yourself. You are worth it

(previously posted elsewhere in 2014, yet worth reposting)

Golden Girls Explain Golden Opportunities

TBI is an invisible disease….so is PTSD….and so are things that are obvious injuries if NOT actually checked…..if the doctors actually LISTENED to their patients and did the tests and procedures they were supposed to from the beginning rather than making judgements without following through – or without actually consulting the patient about their decisions.

This is essentially what happened to me too. I was in a vehicle accident with polytrauma and Traumatic Brain Injury and several fractures. Then I keep complaining all through therapy that my pain was worse and I was losing strength on my right side. I was released to attend PT OT and ST without restrictions that during and after therapy….I spoke of my pain and limitations often. Not the referring Orthopedic Dr. nor the Rehab Dr. ever did a CT Scan to follow up on my pain or x-rays of all the previous fractures. In fact, the Rehab Dr. said it was probably all anxiety related and I needed to put in “more effort”…He even held my arm up and dropped. I couldn’t hold it up on my own. He thought I should try harder – what he didn’t accept is that I was giving it all that I could. It just wouldn’t work….and now I know why. As it turns out for the last 9 months I finally get that CT scan and it shows that my ribs 2-11 are still fractured and displaced with NO HEALING…and that shattered and fractured scapula on the R side?….YEP….no healing either. I am now scheduled for surgery Oct. 8th to plate and put screws on each rib and reconstruct my scapula/body and plate and screw those as well…..obviously THEY weren’t putting in enough “effort”…. if they only listened to me. Feels good to be validated and know that I can actually trust my own judgement about my body though…my PCP on the other hand has been great so far….I have a medical case manager too who has been advocating for me as well….I can say that they only added to the anxiety I was already having about the wreck in general….those other doctors, that is.

This is a great episode from the Golden Girls show about Invisible Illnesses where she confronts the Dr. who didn’t listen to her…..this is just AMAZING!!!

I only wish I could do this with my Nightmare Doctor….

Compilation of all the doctors Dorothy went to and the process she went through to get answers: