“Aprons”; all things kitchen and girlie and “Sneakers”; all things outdoorsy, fitness, sweat, and tomboy. My Yin and Yang. – Me, 2011
Aprons (cooking) and sneakers (racing and fitness) are the things that kept me afloat for a long time.
A while back this blog took a sharp turn. It’s an account and of my experience with multiple traumatic brain injury (TBI) and a lengthy misdiagnosis. I’ll ruminate on whatever may be of value to someone else dealing with TBI; symptoms, secondary issues such as migraine, balance and vision problems, muscle weakness and post traumatic stress. There’s also much to be said about how TBI effects those around you and most importantly, how to get help and treatment, which was my greatest battle.
In brief: My first TBI occurred while deployed in 2003 and I sustained another in 2014. I didn’t have a diagnosis until March 2016 and obtained a second opinion diagnosis in May 2016. My cervical spine and jaw were both damaged. I lost some motor control and eventually strength, especially to my right arm and hand. My vision was knocked into something called, “conversion insufficiency,” and poor ocular muscle control led to a variety of vision-specific associated diagnosis.
I struggled with navigating the military and VA medical systems. For many years I was labeled “emotional” and even my physical problems dismissed as “secondary to emotional problems.” The VA tried to put me on seven medications at once, and that is when I started kicking in doors. Eventually I found help and I do most of my rehab at NYU Rusk. There are higher level treatments I need to regain agility but insurance doesn’t cover them and the VA does not offer them. So I need to go to a facility with a grant for veterans (I’ve just been rejected by two), or receive a grant and take it to a clinical sports performance facility. Knowing what I need but not having access to it is, by far, the most frustrating part of this process.
I still have some degree of trouble getting providers to recognize I was very highly functioning, both cognitively and athletically, before this all happened, so having “mediocre” coordination or “mediocre” hand dexterity is not an option.
Once I had some answers, I was unable to find someone currently being treated full-time for TBI. A lengthy misdiagnosis would mean someone else who had to come up with a hundred adaptations to function in society. This would be the person who might understand me.
If someone out there is looking, here I am, and I am happy to help in any way possible.
**Haiku summation of my entire adult life**
Big ‘ol head traumas
Thought maybe she’d gone crazy
Came back like a champ