Chronic Pain

Holding on vs letting go…

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.

#concussion, #pcs

More than “just a headache.”

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.


Chronic Pain

The Role of Sex in Concussion Treatment

Today is International Women’s Day- perfect timing for the latest release of Challenge Magazine from the Brain Injury Association of America.

https://www.biausa.org/public-affairs/public-awareness/news/the-challenge-women-in-brain-injury-issue-available-online

More and more research suggests that while men suffer more brain injuries per year, women’s brains are more susceptible to concussions.

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.

Chronic Pain

In a flash..

IT all happened without me even realizing it was happening.  I had just dropped my girls off at daycare, and I was sitting at a cross intersestion, waiting to make a left turn my school. I was watching the traffic pattern- trying to anticipate when it would be my turn to edge ahead.  There was a pick up truck directly in front of me.  He had his turn signal on- as I did- we were both turning left.

And then, the flash happened.  I didn’t see it coming, nor did a I realize, at first, how significant that moment would be in my life.  In a flash, my and my familiy’s life changed.

A distracted driver ran right jnto the back of my minivan- causing my full travel mug  to be tossed across my front seat.  Likewise, it caused my head and neck to be tossed forward and back, two times over.  My brain bounced within my skull and my neck was strained beyond its capacity, and with these injuries, my life was forever changed.

It can happen to anyone- and it can happen in a flash- so embrace each moment for all that it is worth- you never know if it could be the end of the old, and the start of your new life.

Be aware, and don’t believe The Myth of Mild Concussion.

 

Chronic Pain

Is it Friday, yet?

It is currently lunch time on Wednesday, and when I add it up, I have spent approx. 9 hours in doctors’ offices, and 3 hours at the dentist so far this week. To be fair, 2 hours of the doctor visits were for my oldest daughter, and the dentist was for my youngest daughter, but I am still one tired momma.

When you throw in “normal” everyday activities like showering, dressing, food prep and consumption, I feel like I have used up all of my spoons very early in the week. So for the rest of today- or at least for the next few hours, this is my view-

(Notice the ears of my always faithful, comforter in chief.❤️)

To summarize the result of my appointments, I have to consult with a pulmonologist because a sleep study showed that I am losing oxygenation when I sleep (not like apnea when you stop breathing). My rheumatologist also suspects an auto-immune response in my body- though she hasn’t pinpointed what, yet. My bloodwork is negative, and she suspects seronegative arthritis, a form of rheumatoid arthritis. This is all a bit nerve-wracking to me as my mother passed from auto-immune disorders three years ago. Knowing that the brain injuries can lead to disruptions in ALL areas of the body, I have legitimate reason to be concerned.

I am also being referred to a OMT Physical Medicine and Rehab doctor to treat me for allodynia and other pain issues. The lucky part of that is the doctors I was referred to are former co-residents with my CURRENT PMMR doctor that I see for concussion management– but I have to be honest, it’s completely overwhelming to think of adding two more doctors to my mix- not to mention that the therapy docs are 45 min away. I am already going to one medical massage per week and one-two physical therapy sessions- along with whatever other appointments come my way. It would be overwhelming for a person with a healthy brain and body to navigate this all, but for a spoonie like me, it feels like I am standing in front of a mountain that I need to climb, and the terrain goes straight up the face.

My head is spinning, and I am employing all of my “just do the next, right thing” beliefs, ala Glennon Doyle, and that is the only thing making it possible for me to crawl out of my bed each day. I WANT to spend my time and energy anywhere but in the doctor’s office or on my couch, but that seems to be my path for the next few weeks, at least. (Did I mention that my daughter ALSO has to have PT twice a week for a shoulder injury?)

It’s all a bit much, and it’s time to bring in the reinforcements. So I would like to know, what is YOUR best spoonie tips for surviving when doctor and therapy appointments are adding up?

(Bonus points if they don’t cost a lot of money- it’s easy to outsource cleaning, laundry and meals when money isn’t an object, but when facing some high out of pocket expenses, that has to be factored in, as well.)

I hope to have enough energy to finish my post about vestibular therapy, soon- so be on the lookout!

Chronic Pain

Neurofatigue

The thing about learning how to blog- and trying to organize all of my thoughts is that it is very tiring. So while I may have a series of ideas bouncing about in my head, and maybe some snappy one-liners cued up, I have to figure out a way to pace myself so as to not do harm.

Everyone gets tired. People may even use the expression “brain dead” to describe themselves after a particularly tough day. Neurofatigue after brain injury is totally different. In fact, I would relate my Neurofatigue to going “All In” in a game of poker with one pair. Unless there is some random stroke of luck, there is nothing left.

In the early years of my accident, I would often “feel” my brain trying to work. I would describe it best as I would get a “flopping” sensation in the front of my brain- one that I would liken to a goldfish who had somehow fallen out of its bowl. My brain was flopping and twisting for its life. Today, this sensation happens a lot less, (Thank God!), but it is still brought on when I work too hard on matters of perception (such as puzzles) or when I am trying to synthesize too much information from too many sources. As a result, as I flip back and forth through WordPress guides and tutorials in order to learn how to make my hyperlinks work, or how to allow followers to know how to contact me, and also write, it can be a challenge.

So while I have a LOT to say about brain injuries, chronic pain, migraines and the like- it may take a bit in between posts. I hope to continue to reach other #warriors and remind myself, and them, that someone DOES understand.

Chronic Pain

Sometimes, I feel like that pony…

Some days, I feel like I only have one “trick” up my sleeve, and today is one of them. Perhaps it is because I did “too much” yesterday. I had a physical therapy session for myself, and then had to pick my daughter up early from school for her own PT session. I then went out with my family for a quick bite, returned home to help with a homework assignment, and dissected the plot of a television show with my oldest daughter. Oh, and then I had to shower and blow my hair half- dry before turning in to bed. These are all mundane tasks for the healthy person, but maybe that was all too much for one, mid-winter day. I never know the answer.

Today, I had to awaken an hour earlier than usual to take my youngest daughter in for some dental work. (Anytime my sleep is thrown off in the slightest, I can pay the price for days after). Whatever the reason is, today, I feel like I have accomplished all that I can for the day. And that is a difficult pill for me to swallow. As I lounge on my couch, huddled in a blanket to try and keep warm, I stare aimlessly at the tv, or social media- because I know that reading a book would be too taxing for my brain. I look at my family room that needs redecorated after taking all of our cozy Christmas decorations down, and I wish I had the energy to Pinterest -up some projects around my house. I try not to think of the ever-growing mound of laundry upstairs, and I take mental inventory of what we have in the refrigerator to try and determine an easy dinner to make. I do this all while keeping a watchful eye on the clock for when my girls will be home from school- because each day, I paste a smile on my face and greet my kids with whatever energy remains within me. On days like today, maybe that should count as my second trick– assisting with homework, the daily run-down, and extra-curricular activities– they all take energy that most people don’t ever have to think about. But, I do- and sometimes, it can be tricky.

#pcs, Chronic Pain

The question of rest

How do I determine when to push ahead, and when to listen to my body and rest? These are questions that I struggle with daily. Each morning, I wake up not feeling refreshed. I put one foot in front of the other and rely on the scientific theory, “An object in motion will stay in motion.”  I rely on this mantra as I push through the initial fog, reach for my medicine, and begin to fuel my body for the day.

After the hustle and bustle of getting the kids out of the door for school; I take time to assess my body and brain for how they are feeling each day.  What hurts most today? (Unfortunately, for the past 7 + years, it has never been ‘Does anything hurt?’) I also need to assess how alert I am. Am I following conversations well, or am I feeling confused? Is there any part of me that needs to be addressed before I can start my day?  Sometimes, my medicine will kick in and I feel more alert and capable after a half hour or so. Other days, I feel like my energy and focus are nowhere to be found. It can be incredibly random and therefore difficult to predict- all which can lead to more frustration if I let it. With it’s myriad of symptoms, there is no getting around it, living with Post Concussion Syndrome (PCS) is challenging.

 I check my schedule for the day to see if there are any appointments or errands that I must attend to, and if not, I typically take that time to sit on my couch, peruse social media, and flip between Good Morning America and the Today show as I continue to take inventory of myself.

Some days, I have non-negotiable appointments set up- and they can be both good and bad for me.  When I have to be out of the house, I typically get ready and go- no matter how I am feeling- and I deal with the consequences later. Doctor’s appointments and physical therapies can be both motivating and exhausting at the same time.  I rely on adrenaline to see me through, and I crash when I get home. Those days, I get frustrated because I feel like I have spent all of my “good energy” addressing my health and not doing anything fun or fulfilling- but I also can find solace in the fact that I have ticked concrete items off of my to-do list, therefore “earning” the exhaustion I feel.  The equation is balanced in that occasion. Other days, I may not have anything concrete on my schedule, only a list of tasks I would like to accomplish or things that I “should” do. These days can be trickier to navigate because logically, I know that my body DOES need more rest, so how do I balance what I would like to accomplish and what I should do?  How can I tell what would be best for me in the long run- to push or to rest?  Seven plus years into this journey, I still struggle daily with how to answer that question.  Sometimes, I even wonder if someone should be making that decision FOR me because it feels like too often, I have a tough time finding balance between the person I desire to be and the person I now am- and I still have a very difficult time accepting that fact. One day, I hope to be able to accept myself as I currently am, not who I was.

teaching, Uncategorized

Life, Interrupted

The Myth of the Mild Concussion

In February of 2011, I finished my Master’s Degree in Reading education with a 4.0.  I did this while working full time at my dream job, teaching 7th grade English at a prestigious middle school. I was happily married and raising two toddlers. I was very excited, and I had begun to talk with my husband about the possibility of going on to earn a doctorate degree. I was on the trajectory towards even more success. Or so I thought.

Flash forward to May 11, 2011. My youngest had just turned 2 the month before, and I had dropped my girls off at daycare at around 7 in the morning.  I was stopped in traffic on a side street in a tiny suburb of Pittsburgh when I was struck from behind by another minivan. My head was violently shaken back and forth, and I struck my headrest from behind. I immediately felt “fuzzy,” but figured that I was just emotional from the accident.  After the police came and information was exchanged, I continued on with the quarter mile drive I had left to the middle school. I still didn’t feel clear, but the thought of missing work didn’t even cross my mind. As I walked down the hallway, I remember my colleagues looking at me and asking what was wrong and saying I had a funny, confused look on my face.  Because I was now running late, I briefly told them what happened and rushed into my classroom to get ready for my day.

After homeroom, first period entered and I was about to deliver my morning greeting and introduce my lesson. I stood up, as I had for 13 years prior, and I opened my mouth to tell my class “Good morning.”  After I got those words out, I began to stumble for words, and realize that I couldn’t remember what I was about to teach or say next. Fortunately, I had an intern that year, and he recognized that something was wrong, so he took over teaching for me. I had no idea that I would never lead a class again.

I left the classroom and immediately went to the school nurse. She performed some simple eye tests and told me that I needed to go to the hospital ASAP. My eyes weren’t tracking correctly and I seemed off balance. I wanted to drive myself, but she insisted that I get a ride.  My husband was out of town on business, so, I called a friend and who drove me to the closest hospital. I was examined and told that I had a “mild” concussion and that I should get a good night of rest. I was to follow up with my doctor in a few days if my symptoms got worse.   I was never told to stay home from work, and it was never explained to me that all concussions are classified as “mild” if the patient doesn’t lose consciousness– two very important pieces of information.

I followed the doctor’s orders, and I had friends help me with my kids that evening until my husband was back in town.  I took Advil for my headache and went to bed early. Being the dedicated professional that I was, I returned to school the next day.  I figured that because I wasn’t in debilitating pain, there was no reason for me to stay home. I had a headache and a sore neck, but again, I was unable to teach and my intern took over. I spoke with my principal that day, and got permission to take precautions such as keeping the lights low in the classroom, and taking “time outs” in the nurse’s office as I needed to throughout the day.  As my intern had been with me all year, I knew my kids were in good hands, but didn’t want to shirk my professional duties; so I tried to keep up as best as I could. It was clear that I was struggling, but I didn’t realize at the time how much further damage I was causing to myself.

I can vividly remember sitting in an after-school meeting that week and feeling that I just. Couldn’t. Keep. Up.   It was almost like the words being spoken around me were whizzing by my head, and I just couldn’t reach out and grab them.  My headaches were growing more and more intense, but I really didn’t want to miss school, as my husband and I were about to start trying for our third child, and I wanted to hold on to as many sick days as I could.  

By the end of the month, my headaches had turned to full-blown migraines, and I began to lose control over my emotions really easily.  I was snapping at my little girls when I couldn’t keep up with their innocent demands for their sippy cups to be refilled, or for a book to be read to them. I cried at the drop of a hat, and I was always exhausted. I knew something had to give.

I contacted the UPMC concussion clinic, but the first appointment they could get for me was a month away. So, I continued on with work as best as I could, and once summer vacation came, my girls came home from daycare.  We were supposed to be starting our summer of fun. However, it was very clear that I wasn’t able to care for them and my migraines just continued to worsen. I would wobble when I stood from a sitting position, and when I would leave to drive somewhere, I would get confused and take wrong routes—even ones I had driven hundreds of times before.

Once I got to the concussion clinic and was given my very first concussion checklist, I burst into tears.  I was displaying almost every symptom on the list. My husband held my hand and reassured me that we were in the right place now, and that they would get me all fixed up.   I took my first IMPACT test that week. My scores for the various components fell within the 2nd and 18th percentile, and my symptoms were considered “severe.”  The doctor told me that I had no choice but to put my kids back into daycare and to spend my days resting as much as I could.  This was 6 weeks after my accident occurred, and it was the very FIRST TIME that a doctor told me that I HAD to rest in order for my brain to heal.  I was devastated, as were my kids. They wanted to be with me, and I with them, but that wasn’t meant to be.

I spent the summer resting- but my migraines were continuous and getting worse. Everything about me felt out of control.  I had food cravings that I couldn’t resist, my emotions were a wreck, and I felt desperate for more help. I was referred to Physical Medicine and Rehab to follow up with the head of the department. However, I couldn’t get an appointment until mid-August. I remember calling the clinic in tears, at least twice a week, to see if there were any openings to get me in sooner. I HAD to get better as the start of school was looming very near, and I needed to be “fixed. “

The first time I met with my doctor, she assessed my entire situation and began to make a plan. Her first order of business was to find medicine to treat my migraines (it would take us 9 more months before we could even lessen the pain), and she referred me to the best vestibular therapist in town.  Unfortunately, she also gave me the heartbreaking news that I would be unable to return to work- that even with the precautions that I had taken the spring before, just being in the building with the chaos of the classroom and halls, the lights, and all of the movement was not good for my head. I was crushed. I remember agreeing to take SOME time off, but I asked her only to sign me off for one marking period, to give me a shot of returning to school in the fall.

I met with the vestibular therapist following week, and I began what would be a year and a half of therapy to regain my balance and lessen the cognitive blowback from visual stimuli that I was having.  I was also referred to a neuro-opthamologist, for assessment and began my approx. 6 months of vision therapy. My therapeutic regime was grueling. My mother, my mother in law, and my husband would take turns each week driving me to these therapies and numerous doctor appointments. Each appointment would totally exhaust my brain, and I would spend the hours when I returned home so mentally exhausted that I couldn’t form a logical sentence. The best way I can describe this level of mental exhaustion was that I couldn’t even make simple decisions as to what topping I would like on my pizza for dinner that night. I followed EVERY DOCTOR’S ORDER to a “T.”  I desperately wanted my old life back.

By the end of December, I became “cleared” on the Impact test.  However, as the doctor explained- this really didn’t mean much for a woman of high intelligence who was suffering such a multitude of ongoing symptoms.  The test just meant that I returned to the “average” range of intelligence, in a controlled, quiet environment.  The Impact test does not mimic real-life, which is anything but controllable.

After a year of continued therapies, I was forced to retire from a profession that I loved and am unable to work full time. Most days, I can’t even parent, solo, all day. I never know day to day what my threshold of activity will be before my brain fatigues on me, or if I will wake with a debilitating migraine or vertigo.   I have tried every therapy put in front of me, and I have completed each task with the same gusto and dedication that I had put into my teaching and parenting. Nothing has allowed me to return to my former self.

I still see my doctors every 4-6 weeks. I suffer from several migraines and episodes of debilitating cognitive fatigue each week.  Preventative migraine medicines only work minimally for me. While this is very discouraging, I try to look at how far I have come, and not spend as many hours looking at how far I have yet to go.  It helps to look at things this way when your life has been hi-jacked by something you can’t control.

Invisible, chronic health conditions are extremely difficult to live with.  I know that I don’t “look” sick- if I had a quarter for every time I have heard that.  But I am sick. And my life deserves to be understood, too. I need people to know that I am not being lazy when all I can do is to sit in the shade and watch my kids play outside.  I need them to understand that when I ask for a quiet table at a restaurant: I’m not just being a difficult customer. It is because I can’t follow a conversation if there is too much noise around me.  I need people to know that when I lose my train of thought mid-sentence (aphasia), or get frustrated when I can’t help my second grade daughter spell words aloud, it’s not within my control. I need people to understand that I make up and the smile on my face are nothing but a mask I wear outside of my house because I still suffer, daily, from one, mild concussion.

There are thousands of people like me, who suffer from Post Concussive Syndrome who feel helpless when they see others recover quickly from something they have so valiantly battled. I still desperately want my life back, but have been forced to redefine what life is for me. I take the good days with the bad, and realize that looking forward is healthier than looking back.  I will continue to hope for new medical breakthroughs that can advance my healing, and I will pursue any new avenues with the same amount of dedication as I always have. But for now, I can only hope that my story can help save someone else from the myth of the mild concussion.