Just thought I'd mention here something that some readers may not know and that is that this blog is a "medical blog."
It's just a place for me to post and record my feelings about happenings that relate to my April, 2004 injury (Jefferson Fracture, 4 plc, and "atlanto-occipital dislocation"-- or in laymen's terms, "internal decapitation"). I started this blog 4years ago, when I thought I was going to have surgery to stabilize my head/neck, and I thought I would be in a halo for a few months. I thought, at the time, that it might be of interest to hear the day-to-day struggles of living in a halo. However, that never happened, which is, even in the abscence of the surgery and halo placement, still a part of the story.
The readers here have followed my journey of raised hopes and dashed surgery plans. Once again, it's all still a part of the picture. And something that many, many patients (those with congenital conditions such as Chiari Malformation or cranial-cervical instability, and/or those with traumatic injuries such as I endured) deal with year after year after year. It's now been 7 years since that jumping horse stopped suddenly at the base of a 3'6" jump and launched me over his neck, over the jump poles, where I landed head first and thus suffered the traumatic injuries listed above. April 9 will mark that 7 year anniversary.
Rejection by specialists; difficulties dealing with health insurance and doctors' secretaries ; egotistical neurosurgeons and prima dona specialists; cancelled surgeries; ongoing pain and spinal cord symptoms; presenting our situations to family and then coping with their responses, and oh, so much more, all of these things are shared by so many, including myself.
For some people, they break a major bone, or receive a tragic diagnosis and their insurance stands by their promise of being responsible for treatment and follow up care, they undergo surgeries and treatment and then they recover. They have not had to undergo that difficult search for a specialist who understands the rare condition or injury that was incurred. They've not had to convince family and fellow workers that there IS something wrong, something major.
Thankfully, the sort of journey I've just described is a common occurrence and for that, I am so thankful.
But there are different experiences from that and I think many of my readers here relate to the disappointments, betrayals, grief, bitter rejection, shameful treatment, castigation from specialists and, again, dealing with egos and personalities and trying to "win them over" to your team, praying they will go to bat for you. Far too often, no one goes to bat for these people. They wind up being the driving force for any iota of care or treatment they receive.
After crawling under the porch and licking their wounds, these patients keep picking themselves up, dusting themselves off and moving ahead with the war, even after year upon year of intermittent defeats and lost battles. They are heroes of a sort, unknown soldiers fighting an unseen battle with little to no assistance from anyone else (family, fellow workers, case managers and claims adjusters, surgeons and nurses et al).
As you read my ongoing story, perhaps you can think of others in your acquaintance who are riding down the same trail, and this knowledge will help you to help THEM, and for that, I would be so thankful.