Hello! Welcome to Concussion Chronicles. I am glad you are here. I’m Jennifer, and I am a former English teacher, mom to two tween girls, wife to Michael, friend to many. Seven years ago, I had my life turned upside down by a seemingly innocuous motor vehicle accident. I now live with Post Concussion Syndrome, chronic pain, and migraines. This blog is my attempt to bring awareness and understanding to the invisible challenges people with PCS, migraine, and chronic pain face.
Happy Brain Injury Awareness Day, 2021. Because of the pandemic, the briefing on Capitol Hill was conducted virtually, which allowed me to participate for the first time. This briefing was held by the Congressional Brain Injury Taskforce and the focus this year was, no shock, the effect of Covid 19 on the TBI population. There was a lot of scientific talk thrown around, but the most remarkable contribution, to me, came from former football player, Eric Washington, whose life was dramatically altered by concussions. Mr. Washington expressed a thought that I have had many, many times throughout this pandemic. He pointed out that now everyone in our country has experienced something similar to what those with brain injuries do- everything in life changing on a dime. Each “normal,” daily activity has had to be altered and reimagined through this pandemic; much as the lives of TBI patients have had to be. We all have been left with a year, (or a lifetime), unlike what we may have imagined. What we do with it is up to us.
The BIAUSA is hosting a webinar to discuss Covid, the vaccine, and TBI. There is recent reporting encouraging people with brain injuries to get vaccinated ASAP due to heightened threat of inflammation from the brain’s response to Covid.
I encourage everyone to sign up for this webinar- only the first 500 people will be accepted, so don’t delay.
Stay safe, be well.
Not too many things make me speechless, but a quick look at Twitter this morning did that.
I came upon the post below about the role of sensory overload and pain. Specifically, Fibromalga and related pain diseases as written by another blogger, Chronic Mom.
In multiple studies completed by National Institute of Health and the University of Michigan sensory overload can be directly linked to increased pain levels in patients with Fybromalgia and other pain disorders. This blew my mind. Imagine having a hunch about something happening in your own body, but never quite having the proof? Well, here it is, for me, spelled out nice and clear- and very relatable.
I have a traumatic brain injury. With that comes a high sensitivity to all sensory events- sight, smell, sound, touch, and sometimes taste. I also have Fibromyalgia, Allodynia, Rheumatoid Arthritis, and Chronic Migraine- all diagnosis’s that came after the accident that caused my brain injury. Sometimes, it felt like every year, I was adding on a diagnosis, and I felt, deep in my bones, that the root of it all was my TBI. Well, to me, this is the proof I have been waiting for to explain all of these comorbid issues.
To put it simply, because of my TBI, my brain works harder than the typical brain. Something that other’s take for granted, such as attending their child’s soccer game, or grocery shopping can cause me to need to rest in a quiet room for hours after. And sometimes, I have pain flairs that make my entire body throb, and make even the slightest touch on my skin ‘burn.’ Recently, I had a flair which caused me to not be able to walk on my left foot for almost a week. My inflammation and resulting pain was excruciating- and mysterious. I have always thought that these ‘flairs’ have been caused by my over-doing it. Now, I have proof. My words could never do justice to how validated I feel right now. Living with an invisible injury can feel like a constant challenge to ‘prove’ my symptoms, sometimes even to friends.
Timothy Keller, a christian author, wrote “To be loved but not known is comforting but superficial. To be known and not loved is our greatest fear. But to be fully known and truly loved is, well, a lot like being loved by God.”While I do feel truly known and loved by my husband, I know that it is difficult for those that may know me in a more casual setting to fully understand my life. I hope that these studies and this post, does more to explain what life inside my body is like. If it helps me to be more known to myself, it can certainly enlighten someone else. Many, many thanks to Chronic Mom for this insight.
A recent podcast from Pantsuit Politics (which I love) talks about Five Things to Know About The American Disabilities Act. It discusses the exhaustion that disabled people feel around having to prove injuries and deficiencies which made me feel strangely understood. I encourage everyone to check out this, and all of Beth and Sarah’s episodes.
Be well. Wear a mask.
Today is the day.
Every brain injury is unique and invisible. So is recovery. It is important for the public to educate themselves
Hear the stories of survivors all day along through the Brain Injury Association of America.
Be sure to comment which story resonated with you the most- OR any questions that I may be able to answer as a survivor myself.
As brain injury survivors, we are well versed on how life can change on a dime. One moment we can have a fully functioning brain, and the next, we don’t. My moment occurred on the way to work one day. One moment I was sitting at a three way stop, and the next, my brain was shaken in a forward and back trajectory from being hit from behind. A seemingly innocuous accident that forced me to retire from my beloved teaching career, and still plagues me with symptoms and limitations, almost 9 years later.
But I digress, as TBI patients often do. On March 13, 2020, I feel like life changed in an abrupt, dramatic fashion. On that day, President Trump issued a state of emergency for the USA because of the Covid-19 virus. Life looks different today, almost two weeks later. Schools in Pennsylvania are closed until at least mid-April, (some states have already canceled for the remainder of the year), and all non-life-sustaining businesses are closed. Life, all of a sudden, feels very heavy, and looks very different.
So what does this have to do with TBI patients? Well, actually, a lot. TBI patientsare already high-risk for comprehension and memory issues, as well as anxiety and depression. First and foremost, it is important for everyone, even the patients with decreased cognitive ability, to understand the Covid-19 virus to the best of their ability. The Brain Injury of Pennsylvania put out this resource to help patients with aphasia understand the virus.
Memory issues also come to play for individuals, especially when leaving the house. Guidelines tell us to repeatedly sanitize and wash hands for 20 seconds at a time. Those with more significant memory issues may not remember to do this as often as necessary, therefore possibly spreading the virus further. Many TBI patients, myself included, manage multiple medications per day. Poor planning of requesting refills (and sometimes limited resources) may result in days of missed doses due to doctor and pharmacist’s limited hours. During this time when all citizens are being urged to stay home as much as possible, some pharmacies and drug programs have waived the early refill limits to allow for patients to ensure their medications are not missed.
And perhaps the most applicable problem for TBI patient is the increase in levels of anxiety and depression. It is well documented that side effects of TBI include mood disorders such as rapidly changing moods, anxiety, and depression. Personally, anxiety has been my biggest struggle during this crisis. I do not do well with the unknown. My family will attest that I like to have a plan, and to know what to expect. This Covid-19 crisis has turned that all upside down, and my anxiety has increased. While I do have rescue medicine to help when other methods fail, I always try to use other methods to calm myself down. Recently, Harvard Medical School recommended yoga to deal with Covid-19 anxiety. Fortunately, Love Your Brain is reworking their spring yoga classes to bring them digitally, along with meditation and community building activities. I, personally, have been trying to use their breathing exercises to help with my anxiety-induced insomnia. I look forward to completing some of their yoga classes at home.
This is tough, folks. There is no doubt about that. But when we don’t know what to do, it’s always best to just do. the. next. right. thing. And right now, that next best thing is to just stay home– and breathe.
Interesting read about the migraine rescue med, Imitrex. I take a once a month CRGP blocker, Ajovy, but that isn’t enough. I still get several migraines per week, and triptans are part of my arsenal, as well as taking Reglan with the Imjtrex. A complicated formula to manage- especially when I am in pain.
In the end, though, while I worry about the toll these meds will have on my body, I couldn’t manage life without them.
#ajovy #imitrex #migraine
Warning: political opinions ahead.
Recently, the president of the United States ordered air attacks which resulted in retaliatory missile attacks against our troops in Iraq. To date, 50 US service people have been diagnosed with Traumatic Brain Injuries. Instead of recognizing these injuries as serious, and potentially life-altering, the person who is in charge of these brave service members chose to minimize their diagnosis. To quote the president, talking about these soldiers, he said “I heard they had headaches and a couple of other things, but I can report that it’s not very serious.”
On the contrary, President Trump. The United States Defense and Veterans Brain Injury Center has written, “The high rate of TBI and blast-related concussion events resulting from current combat operations directly impacts the health and safety of individual service members and subsequently the level of unit readiness and troop retention. “
If The United States Department of Defense recognizes TBI as a very serious injury, shouldn’t the leader of our country? Shouldn’t he, at the very least, refrain from making such uninformed commentary?
*Insert knowing eye-roll*
At one time, we had a president who cared enough to be informed about an issue before he spoke. Back in 2014, President Obama said, “I’ve seen in my visits to wounded warriors [that] traumatic brain injury is one of the signature issues of the wars in Iraq and Afghanistan.” That year, the US, along with the NCAA committed 30 million dollars for concussion research- research that is going to help care for these newly wounded soldiers.
The National Institute of Health recognizes that there is no such thing as a “mild” traumatic brain injury. If only the person in charge of our troops did. The Veterans of Foreign Wars group is demanding an apology for Trump’s erroneous comments. I hope they receive it.
Wishing everyone the happiest of day.
I hope you paced yourself, and stole rest when necessary.
If your nervous system has trouble settling down after alot of input, (like mine does) may I suggest a breathing tool I learned in LoveYourBrain yoga.
Lie down. With eyes closed, simply become aware of your breathe, and then, begin to try and slow your breathing and distract your mind. Focus on counting your inhales and then counting your exhales. Keep it as slow as possible, and if your concentration wanders, do not worry or react, simply return to your breathe and count again. Repeat this over and over until your mind and soul are at peace.
I hope it helps you as much as it has helped me.
For my American readers, Happy Thanksgiving!
I recently contributed to a blog post about Chronic illness and isolation.
I think that many of my #spoonie readers will relate.
Silent Symptoms of Chronic Illness – Loneliness and Isolation
Today is International Women’s Day- perfect timing for the latest release of Challenge Magazine from the Brain Injury Association of America.
There is also research supporting that women’s brains are more complex (but we won’t tell the men that 😉)
It’s becoming increasingly clear that women and men need individual treatment plans regarding their injuries- or the discrepancies will continue to grow.
PINK CONCUSSIONS is an organization formed to do just that. From their website:
PINK Concussions is the FIRST EVER non-profit organization with a highly personal and urgent mission to improve the pre-injury education and post-injury medical care for women and girls challenged by brain injury including concussion incurred from sport, violence, accidents or military service.
Today, on International Women’s Day, I, for one, am thankful for the research and development about women’s concussions, and I hope it continues. I also pray that one day, they will find a cure for long-term PCS sufferers like me. Until then, I will continue to fight and try to remain hopeful.