“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.
You can essentially forget any post before April 26, 2017. Or go back and look at them. This blog is taking a sharp turn.
THIS WEBSITE IS NOW AN ACCOUNT OF MY EXPERIENCE WITH MULTIPLE TRAUMATIC BRAIN INJURIES, THE LENGTHY MISDIAGNOSIS, THE SYMPTOMS, THE SIDE EFFECTS, THE WAY IT EFFECTS OTHERS AND, MOST IMPORTANTLY, HOW TO GET HELP AND TREATMENT AND GO BACK TO CRUSHING LIFE. THERE IS HOPE!
I’m long winded as all hell, so if you’re short on time, here is the concise version: I had a TBI while deployed in 2003 and another in 2014. I didn’t have a diagnosis until March 2016 and obtained a second opinion diagnosis in May 2016. I sustained damage to my cervical spine and jaw. I lost some motor control and eventually strength, especially to my right arm and hand. My vision got knocked into something called, “conversion insufficiency.” Navigating the military and VA systems is a bitch. I struggled. I eventually found help and I am in rehab at Rusk. It took a long time and I still have trouble getting providers to recognize that 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. The worst parts of this journey were the times I couldn’t get help and thought I might be, “going crazy,” – we’re talking 13 years, no big deal – and then the lapse in time between diagnosis and actually getting treated. It’s bothersome to me that an “excuse” I often get is that I “seemed fine.” UNSAT. This has been a long road and I was not able to find a person who is currently being treated full-time. I also have had trouble finding female veterans with TBI, much less with one or some with over a decade of misdiagnosis. Trust me, you develop some interesting adaptations. So, if someone out there is looking, here I am, and I am happy to help in any way possible, even if you just want to compare notes. Okay, that wasn’t concise. This is a saga not a Haiku. Although I do love Haikus. Let’s try one:
Big ‘ol head trauma
Thought maybe she’d gone crazy
Came back like a champ
THE LONG VERSION
I have no intention of playing the victim card. I want this site to be informative and if it helps even one person, I’ll be happy. There will be no crying for me, although I have watched several doctors cry for me, and I have spent countless hours crying. I never once during this process gave up on myself, but I gave up on a lot of people; particularly medical professionals. Trust is now an issue.
I am coming out of this on top, bionic and better, no matter what it takes. Since my first TBI I’ve won military awards, raced Ironman triathlons and many marathons, obtained a culinary arts degree from Le Cordon Bleu, a master’s in journalism from Columbia (during my last semester is when the second TBI occurred), went on to wine certifications and hosted TV shows and traveled the world. Granted, I don’t remember much of it, but I have really stuck this out, usually wearing a smile and cracking a joke.
I’m extremely lucky I made it this far. As one MD said, “I can’t believe you didn’t go crazy.” Debatable, but I’ll take that as a compliment. The trick, although I didn’t know it at the time, was being a master adapter, resilient as hell, a self-advocate, and having that “bit of crazy/stubborn” that some people are just born with. Or maybe it’s nurture. Regardless, I have it.
This is the old blog I started in culinary school back in 2011. This was before I knew “what was wrong with me,” but interestingly enough, it all makes sense now and the name, “Aprons and Sneakers” still applies: When My brain stopped working in the ways I used it most; reading and reasoning, I turned to my other talents. They used to be hobbies, but I had to overlap things I could do with things I liked to do. Physically “doing,” exertion, body mechanics, exploring outside, having washboard abs, flavoring food, smelling and tasting wine… What the hell, I’d turned into the G.I. Jane/Lara Croft/Betty Crocker Barbie.
Oh yeah, you’re probably wondering exactly what happened. I had a severe TBI in 2003 while I was deployed with the U.S. Navy. It was grossly misdiagnosed and a lot of things in my life changed. I came back from deployment and decided I wanted a divorce, but I couldn’t explain why except that I, “didn’t feel anything and you deserve better.” I stopped being able to read without falling asleep. I had to seemingly search my brain for words that used to flow. I had head and neck aches every day. I crashed my bike often. I was sick to my stomach – FOR THREE YEARS – And much more… In short, I was sent to some contracted Air Force chiropractor and diagnosed with a “tic” and “fibromyalgia.”
Praise the lord (who I debate exists) I’d learned to drive a ship, use equipment, and developed people skills before all this started. Interesting circumstance; being unable to do much reading or useful “officer stuff” I lobbied to go to rescue swimmer school. I’d always been a very strong athlete. I’ve never even liked swimming but I subconsciously knew I had to set myself apart physically so I’d have worth to my command. I went, I passed, for a long time I was the only female rescue swimmer that I know of on the west coast, maybe the whole Navy. Regardless, I’d found a “pretty cool” – and cool looking – niche and I enjoyed it.
Fast forward to 2014, I tripped and fell (klutziness is very common with a busted VOR) into that second TBI. Again, misdiagnosed. I moved to Paris on a whim and was convinced my lovely cinderella apartment was infested with mold, as that would explain my splitting headaches every single day. There was no mold. I couldn’t stay asleep. I’d open my laptop and my eyes would cross and I would accomplish nothing. I’d wander the city but, unlike “before,” would rarely feel I knew where I was or where I was going.
When I returned from Europe with my tail between my legs, not understanding why I could only seem to take baths, feed myself and go lift weights, I got more serious about finding out “what was wrong with me.” The medical malpractice side of my story is a whole other bag of worms, and suffice it to say I would be a multi-millionaire had any of this happened in the private sector. Alas, each and every mistake happened in a military or VA hospital.
The way I saw it, I had a zillion problems and it made no sense. I’d always been healthy with almost zero medical issues my whole life. The fact that after 2003 I was always cold, had major changes to the way my hair grew and felt, tripped and fell constantly, couldn’t read with any comprehension whatsoever, felt anti-social and hated being in “busy” places, became very emotional, stopped being able to control vocal outbursts, felt a bit clueless about money, and worst of all, had a constant “fog” in my head made me feel like a hypochondriac. I was raised to not complain and unfortunately this carried over into my medical life, to an extent. My record is loaded with clues to what was wrong. I did voice everything, but back then I trusted what doctors said.
I kept being told I was “just depressed” and had “PTS,” then they added “ADHD” to explain my reading and getting lost issues. THEN, the deal breaker; The VA hospital tried to put me on SEVEN MEDS at once. I finally entered, “Kicking in doors” mode, and I am convinced there are thousands of people in that same place where I was, a purgatory of sorts, who need to do what I did. Get your answers. Then have them double checked. Then get treated and live your fucking life because you only get one.
I made calls. I made threats. I pointed out huge mistakes (seriously, prescribing seven meds to an avid wine drinker is pure negligence). And finally “they” started to listen. Brain MRI, neuro-psych testing, cervical spine MRIs, dynamic jaw MRIs, EMGs… In addition to the many concussions I’d sustained in my sporty life, I had two TBI’s and they account for almost single medical problem I have ever had.
In March 2016 I had my answer, but it came from the VA Hospital. Just thinking about that place puts me in a mood. I went to NYU and had another evaluation. Same findings.
So WHAM! It was time to rock and recover. Now I could get better. Except I couldn’t. It was explained to me that I was “smarter than average,” even with my brain injuries. There was a hand gesture I will never forget (and I forget everything), and I am going to videotape myself mimicking what the doctor told and gestured to me and you are going to lose your mind.
So. Diagnosed but with no treatment options. This is another reason I’ve decided to be open about this process. I spent about six months reinventing the wheel to get on the track to proper care, much to the credit of a non-profit organization, The Cohen Center at NYU, and one of my providers from the VA Hospital. She is carte blanche excluded from the negative things I have to say about that place.
So now I am a full time patient at NYU Rusk Rehabilitation. It’s a lot. A lot more is wrong with me than I ever imagined. The neural pathways I created when my other ones were busted suck; they are inefficient and weak. I fooled a lot of people over the years, to include myself, but I was adapting because I had no other option. I have a long way to go, but I will get there, and as I have been saying, “I’m not going back to 100%. I am going back to 130%.”
Tech is out there. New treatments are out there. This is a hot topic. I have had 12 surgeries, am about to have two spine surgeries, then my busted left jaw gets fixed, and then, hopefully, I have a new and promising brain surgery.
I’d been advised to just talk about this stuff because “people might not want to work with me,” and to be fair I have found some great successes despite my situation. The greater good is more important to me, and I sincerely mean that. I imagine someone else sitting in front of “Photo Booth” on the laptop crying into a downright depressing video journal, weeping, praying for some mental clarity and for someone to just listen. That was me and I don’t want that to be you, or anyone else.
If me being open about my medical situation in the interest of helping others causes any entity to not want to work with me, it certainly was not meant to be. I’m going to tell it like it is. I am going to interview specialists and share pertinent info here. I am going to show you what treatment looks like and explain all the things that are wrong with me.
But there is one thing that is absolutely right: My resolve to get better. It’s not about a payoff or having the excuse of saying, “I am disabled,” it’s about always striving to be better.
I get fired up, especially when I give a shit.