I can’t believe 3 weeks has passed since our last
entry. June’s weather has not been kind to Corey’s headaches. We took another trip to
the headache specialist in Virginia and she is predicting a rough summer for headaches!
This month has been difficult. We’ve been very busy writing for the BIAPA conference but our month has had additional challenges; limited nursing coverage and
Corey’s new party trick…fainting! Saturday we went to Christiana after her
2nd spell in a week.
She was seen by her Neurosurgeon, Christiana’s neurology team,
Cardiology team, and a general internist. They literally ordered every test possible. I’m happy to report she passed each one.
VP shunt is functioning the way it should, CT scan is stable compared to the scan taken in 2012, blood work, urine, thyroid and EKG heart halter all negative. Her blood pressure normally runs low, heart rate and pulse within normal range. In addition, the symptoms did not present as possible seizures. They are calling it a vasovagel syncope. In layman terms; she’s fainting but we don’t know why?
Another confusing twist, Corey has been sitting when each episode happened. For whatever reason, her blood pressure drops as her heart rate goes up and down she goes! If you recall from our earliest posts, Corey’s favorite Disney Princess is Sleeping Beauty; at least now our princess wakes up quickly!
We are looking forward to participating in the Pennsylvania Brain Injury Association’s Annual Conference. The title of our talk is “Incorporating Life into your recovery – Creating your own Roadmap”
I’ve asked Corey to take on her portion of our talk. She has been journaling along side of me as well as working with our day nurse. I was blown away by her list of thought starters.
From Corey’s journal:
Why is it so difficult to predict the outcome?
What causes it?
Will I get better?
(sidenote) – Yes, of course in time. After the brain has healed it takes longer for a few then others and think of it like your brain is an 8 Ball, you just don’t know what will come out of it.
How do I go through having a brain injury – day in and day out?
How does being diagnosed with a brain injury make me feel?
What may be the hardest challenge?
(sidenote) – I endure all physical, mental and emotional. It is simply how to re-work everything and I try and reach that goal every day by walking; easy as that.
If I was diagnosed all over again what would I tell myself?
What is the easiest/hardest part of my recovery?
What is one of the big goals set for me?
What may be an activity I accomplish both physical and mental every day?
Is there anything that used to be difficult that now is getting easier to do bit by bit?
How may I accomplish the BIG goals that are set out for me?
How am I doing with being this way?
How do I feel about having brain injury?
(sidenote) – Personally I’m stumped. Here are some things my mom does for me – first of all she is always there. Well she is my advocate, so of course she is! BTW thank you mom
What’s some things I do at therapy with Natalie and Anne that are good?
When I am with Dr. Askin, I always work on cognitive things such as brain oriented games. Dr. Askins is a great person. She is great at what she does.
Today Corey wrote a portion of her part in our talk:
“This isn’t a speech about PT/OT or Cognitive therapy. This isn’t a speech about ways to recover or help you cope. It’s not enough to live a life where that’s all you’re doing.
(using a quote from the internet ~ Author unknown)
The greatest challenge in life is discovering who you are. The second greatest thing is being happy with what you find.
Even though things are hard, we all have to keep chasing our dreams. I can’t give up on my dreams because I was diagnosed with brain injury. I can’t wait until I get better because I don’t know when that will be; so I have to do it now because that’s what makes me ME…and that is how you put LIFE into recovery plain and simple.
Life is meant to be lived and enjoyed – even through the darkest seemingly hopeless phases. Life after Brain Injury is all about making tiny inroads to get our lives back; survivors and caregivers alike. It’s about small beginnings and seizing opportunities. Although many parts of our lives are still on hold, the day trips, family events and activities we find that supplement our regiment, help us to momentarily step off the hamster wheel. By changing our perspective, we are reminded we can create our own direction. Brain Injury hasn’t frozen time waiting for us to heal. The clock is still ticking. Our life path would have continued to twist and turn despite the circumstance. We must look at our life after Brain Injury without wearing blinders. Our roadmap for planning the future is paved with making the most of today; open to incorporate life’s possibilities, xoxo