3yrs; Day 1417 – from Corey
Hi everyone, its corey,
Mom and I are starting to write our new presentation that we will be giving to everyone at the brain injury conference in November. we have decided to name the talk on something Dedema used to say; “its not the challenge you face, its how you face the challenge”.
our last talks were about how to set up the house, the things that mom would need to get to make me even better, along with different therapies that I do at home and how to keep on fighting for more therapy.
Our new talk is simply about how we keep doing our every day activities never giving up and never giving in. Our mental exercising is harder then working with Natalie.
You all know that not every day is fun and most days are super frustrating. Most of the time, when I am frustrated I feel like saying; Really all I want is to be on my own and for no one else helping me dress or even help me go to the bathroom or walk. It’s like isn’t the whole point of this for me to be on my own? Now you know why I’m angry. I’m tired of having all these people around me.
I am thinking about it and I am really out of ideas to get through every day. mom tells me I am not alone in my feelings, however, truly it feels as though I am some days. So can you help me with ideas? Will you share what you do when you get angry and frustrated so that I can continue to push through my frustration? Can you help inspire me to keep getting through my day to get better?
Thank you for helping me today. I can not wait to read your messages tomorrow, xoxo
3yrs; Day 1416 – can’t live in a bubble
Hi Everyone,
Our trip to Boston was very successful on many levels.
My niece and her husband arranged 6 stops that represented their favorite community pubs located in “Southie”. This was the 3rd year for the bar crawl fundraiser but Corey’s 1st year in attendance. Once my niece announced Corey would be participating the friends that have been reading about her came out to meet our miracle girl. Corey handled the introductions and noise much better then I expected. There were a few minor meltdowns but all in all, she managed to work her way through them. We wheeled her through the streets (city sidewalks are not ADA friendly). When we arrived I helped her stand to walk in. She enjoyed the “mocktails” we invented for her and she has officially mastered how to sit on a bar stool! Thank You to our Boston family for your continued love and support for Corey’s recovery.
Another important accomplishment, Corey was able to express her greatest frustration ‘the wheelchair’. She has had enough. She does not like riding in it and wants to walk ‘on her own’ in the worst way. She feels “inadequate” as she watches everyone else stand and move about freely. She doesn’t like that people stare or the inconvenience of maneuvering in, out and around establishments. Sadly, she doesn’t understand her physical limitations as to why she still needs the chair. I try to validate her feelings and assure her she will stand and walk on her own; it’s not forever it’s just for now. Her response…you’ve been saying that forever!
Unfortunately, Corey’s short term memory continues to steal her sense of achievement. She has no memory of our weekend trip or the challenges she overcame to make it a success. This gives me my greatest sense of sorrow yet somehow ignites my stubborn Irish side. I will not isolate her. I will continue to expose her to new experiences knowing full well she won’t know she even had the experience, because one day….she will remember. We cannot live in a bubble. We cannot stop living life just because the arrangements are too hard or take extra effort. We cannot stop enjoying today as we look towards the ‘someday hopes’ of tomorrow. “When faced with a challenge, look for a way, not a way out” – David Weatherford
xoxo
3yrs; Day 1410 – from Corey
hi everyone, its corey today.
i would just like to throw out there that it really stinks to be constantly getting better and not knowing you are getting anything in return.
my mom is always reminding me that I am getting better and tells me how far i’ve come. she tells me i am working hard to enjoy the rest of my life but that is simply no fun because the end goal seems so far away. so i just keep on getting better and getting better and getting better and it is not a whole lot of fun with all of this hard work.
i hope that eventually it does feel like i am not putting in any extra effort or going anywhere to get better. i guess that is coming; however, the question ‘when will it finally get here’, remains constant.
i do realize this may not be a happy post but some days are just down in the dump days. the important thing is to turn them around and that is as important as exercising everyday. the other important thing is not to bottle it up and tell people when you are sad. i have yet to meet someone that does not need a cheer leader once in awhile to make them feel happy and everyone feels better when they feel loved.
thank you everyone for sticking around for my good and bad days, xoxo
3yrs; Day 1409 – keeping the goal in site
Hi Everyone,
Sorry for the silence but we’ve been struggling to work through lots of transitions. I haven’t had the mental strength to search for any inspiration for a week. Tonight I pushed myself and as always, I found a “God’s Wink” via Ralph Marston’s greatday.com website. I’m going to read this one again tomorrow…and maybe the next day too, xoxo
Keep the goal in sight
When the goal is in sight, you’re much more highly motivated to work toward it. So no matter how far away the goal is, keep it in sight and keep moving enthusiastically toward it.
When you can see that you’re making progress, you are naturally encouraged to make more progress. So as you move forward, remind yourself how far you’ve come, and keep on going.
Nothing can take the place of a clear and meaningful purpose. So give yourself the energy to achieve by knowing exactly where you wish to go and why you want to get there.
Feel the achievement and the rewards that come with it as you work steadily toward it. Keep your vision focused on the goal as you move ever closer to that goal.
Effort becomes effortless and energy becomes far more abundant when you see the objective getting closer and closer. Make use of the power of your dream to make that dream come true.
Get the goal in sight and keep it there as you enjoy your own effective effort to move forward. Keep the goal in sight, no matter what, and achievement is yours.
3yrs; 10 months
Hi Everyone,
I am currently working with a family in Maryland that have recently joined us on this crazy ride. Their son is 20. His mother sat with me asking the same questions we all begin with when we face a major challenge or life changing event; “why”, “how”, “what could we have done differently”?
Unfortunately, there isn’t a reasonable answer. Reason is based on what we already know. We now face the unexplained and reason can no longer sustain us. So what do we do when what we thought we knew suddenly becomes unreasonable?
I remember being told to hold onto HOPE. In the midst of suffering and pain, hope can be completely unreasonable. Even so, it has the power to strengthen and sustain us beyond all reasonable expectations. When working through a challenge we have to keep one foot in reality but we can’t limit ourselves to reason alone.
I shared with our new family that hope can be difficult to reason in the beginning. Sometimes you have to ‘fake’ your belief in it. Try picturing it as something tangible not spiritual. Despite facing setbacks and disappointments the perseverance inspired by this tangible image of hope can lead to new ideas, fuel stamina and help us sustain our spirit.
How many professionals told us Corey might never progress? How many times did we wonder how we would acquire the therapy, therapy tools, supplies for the renovations and manage the day-to-day conflicts? Our only recourse was to try to let ourselves go beyond reason. Our daily objective was to remember; when life is unreasonable, hope is the only thing that will allow the heart to believe what the mind could never consider, xoxo
3yrs; Day 1398 – bridesmaid
Hi Everyone,
We had a busy day with a doctor’s visit, back for PT and last minute packing. Corey’s lists came in handy, seriously! She actually wrote down some items I didn’t remember to think of.
Corey practiced her walk down the aisle with two of her PT techs. As she practiced Natalie and I watched from a distance. Normally Natalie walks behind her and I’m in front of her. Walking beside her we noticed Corey’s left knee slightly bending as she took steps (Instead of the ‘frankenstein’ stiff leg) This is a sign that the botox shots are working! Another reason we had to push for therapy. The shots take time to work; coupled with intensive therapy, produces continued progress towards independent movement. Thank goodness we won more time.
We are signing off for the weekend. I’m sure those of you who follow us on facebook will have a sneak peek to the festivities. I will definitely post a few in our gallery when we return. I’m very excited to have Jackie ‘officially’ join our family. She is a wonderful woman and will be a very good partner for JohnPaul. I still can’t believe my little boy is all grown up and getting married…didn’t he just finish kindergarten?
See what happens when you blink? Have a great weekend, xoxo
3yrs; Day 1397 – Standing by me
Hi Everyone,
The attached poem was written by a survivor. Her words have affected Corey in many ways. The words cling to her and she can identify with its message. She asks me to reread it because, as she says, “this is how I feel too”.
Although it was written from a TBI survivors perspective, I think we all can relate to it’s meaning.
*Ms. Wilson gave her permission to share her words
Standing by Me – by Debbie M. Wilson
Talk to me
I am not invisible
Teach me
I don’t know how
Educate me
I’m clueless but I can still learn
Friend me
so I am not walking alone
Speak to me gently
It hurts to be yelled at
Reassure me
I don’t know who I am
Love me
I am unbelievably lost
Stand by me
I have already lost so much
Be patient with me
I can’t control what is going on
Give me time and support
I will work hard and do my part
Give me a chance
and I will be an unexpected blessing
3yrs; Day 1396 – Time to Exhale
THANK YOU to everyone that prayed and held their breath with us. THANK YOU to every angel and Saint I have been bombarding with my pleas….but the biggest THANK YOU goes to the Bryn Mawr team…I just got a call;
We have 24 more PT visits! That gets Corey 12 more weeks of therapy
The letters to our legislators still need to be written because our story is just one story of the thousands that go unread every day. The difference is in how our story ends vs all the other stories that are not trending towards a successful ending!
4 days to the wedding…it’s only because of long term rehab therapy that, as a bridesmaid, Corey will walk down the aisle arm in arm with two groomsmen for Jackie and JohnPaul’s big day! Time to exhale….xoxo
3yrs; Day 1394 – Insurance & TBI
Hi Everyone,
I received a call on friday from our case manager at Bryn Mawr. Natalie, PT; Anne, OT; Dr. Long and Dr. Freedman (the specialist that injected the botox) collaborated on a letter to send to the Medical Director at Keystone Mercy Medicaid. The letter will be sent tomorrow, Monday. It will not only outline Corey’s continued progress but her gains towards “functional improvement” as a result of the botox shots + consistant PT/OT sessions at the acute OP level. Once it’s faxed, we have to turn it over and hope it’s approved in time to resume services this Thursday.
If it’s denied, we will appeal but it may also be necessary to call on all of you for a letter writing campaign. I happened to think of this on the very day a friend of mine wrote to say she solicited several of her friends to write a letter on Corey’s behalf that could potentially be sent to assist our appeal.
Our primary insurance coverage for continued rehab has been exhausted. Corey’s medicaid coverage is now her primary provider. Medicaid is funded by an individuals state budget. It is run exactly like private insurance; they want to save money and use the same checklist to deny coverage. Just like private insurance, the person reviewing the submission for continued coverage often is not educated nor has an understanding of the particular request within the submission. They use a standard checklist of specific criteria. If the request does not meet and/or exceeds the criteria, the request for continued coverage is denied; there generally is no consideration for the individual and/or extenuating circumstances. This is typically where the appeal begins.
Most insurance companies, whether it be medicare, medicaid or private/independent companies, do not understand Traumatic or Acquired Brain injuries. They base their approvals on the length of recovery for the mild to moderate survivor. My analogy for this generalized score card would be to ask an amputee to run a race next to an olympic athelete and expecting the race to be close.
How will a letter writing campaign help? Look what we accomplished at Corey’s Corner!
I was recently asked to speak at a seminar about Family Advocacy. A TBI parent asked me why every one knows the pink ribbon (breast cancer) and no one knows about the green ribbon (TBI). I recalled the answer I heard at a national conference two years ago.
My reply, “If I had breast cancer, I could still go to work, yoga class, grocery shopping, out to dinner, a movie, a party, the beach and even take a weekend getaway or vacation. Most TBI survivors can not do these simple tasks. The families of the survivors that are more severe can no longer participate in these activities either because they are now caregivers. Many survivors and their family members lose their jobs and their ability to perform the very same tasks. Traumatic Brain Injury affects the entire family”.
“Breast cancer survivors can get out to rally and raise money for research and support. Many TBI survivors can not. Their families, if they own a disabled vehicle, can barely get to the grocery store let alone go for a 2 or 3 day walk to raise awareness. Traumatic Brain Injury is often called the silent epidemic. It was accurately coined because the families and survivors are constantly fighting for their basic needs and working hard to get through each day. At the end of that day there is no energy left let alone a breath to support their voice. Their screams are silenced by their isolation”.
Our Congressman and Senators are not at fault. They often are unaware of what LIFE is like for thousands of their constituents. They are unaware of the daily battles to appeal basic coverage for medical supplies nor the substandard quality of the supplies they are fighting for. They are unaware that length of stay and long term rehabilation is as critical as chemo is to the cancer patient. Without long term coverage, often lifetime coverage, the survivor will regress and end up costing the state more in food stamps, unemployement and welfare. If given the opportunity for longterm care, many survivors have the chance to improve, regaining function.
Severe to Moderate Brain Injuries require longer length of inpatient acute care, unlimited coverage for longterm out-patient rehabilitation; including homecare if the survivor can not physically go to an out-patient program.
Our appeal in not only for state legislators. Educating our federal Congressman and Senators is equally important as their funding approvals affect the individual states. Not all states have special waiver programs and/or equal medicaid/medicare coverage. In fact, Medicaid coverages are first on the list for budget cuts.
The CDC has posted an updated number. There is now 5.3 million annual Traumatic Brain Injuries reported nationally. How can this number have no voice? The families are isolated and fighting for their lives but the battle keeps them in the trenches as the rest of the world marches forward without them. We are not veterans but we are fighting a war just as important for OUR freedom! Freedom to recover in order to reclaim our lives.
Say your prayers for Corey’s approval and if you are interested, find your paper and pens, xoxo
3yrs; Day 1390 – Chores & Lists
Hi Everyone,
Unfortunately, sleep continues to elude me so I focus on what new ‘reality’ therapy we can work on.
In addition to our home PT, today’s distractions were ‘Chores and Lists’.
I use large 5×7 index cards to write the day’s activities. We call them reminder cards. I prop them in front of Corey’s placemat so she can read them and reference what’s important for the day.
Card #1
Laundry
Write packing list
pick clothes for list
Card #2
Friday – rehearsal
Saturday – wedding
Sunday – brunch
We started with the Laundry (we have a stack washer/dryer)
Corey sits in a chair to sort the laundry, then loads the washer (bottom machine) and adds the detergent. During the wash cycle, we walk throughout the house eventually lapping back to the kitchen table to start our packing list. We had 3 separate papers for each day of the big weekend. We talked through the timeline for each day. Corey was in charge of thinking about what clothes, toiletries and accessories she would need to outfit each of us for each event. I was very impressed with how methodical she was and often thought of the smallest detail that I had not thought of. *She was always a great packer!
The thought process involved for writing a list of this sort requires a higher level of analytical thinking. You have to conceptually walk through each step, organize not only the event but the tangible and intangible items needed to properly ensure you can execute it smoothly with everything you might need.
The next step is equally as difficult. Corey has to physically write the list. That might seem insignificant to most but don’t take this step for granted. Writing a list, thinking of the word to describe what she needs, physically holding a pen to control the spacing and size of her writing, remembering how to spell the words, then remembering what she was writing about and reading what she wrote is a HUGE challenge for her. List writing and organizing a topic/items falls in the advanced cognitive therapy category. List writing is just one tool to not only help her strengthen her memory but empower her as well. She feels a sense of control and independence.
Tomorrow we go back to Bryn Mawr. I’m hoping we will hear we were awarded 24 more PT sessions…keep your fingers crossed, xoxo