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.

Chronic Pain

Speechless

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.

In addition:

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.

Chronic Pain

National Concussion Awareness Day 2020

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.

https://www.biausa.org/brain-injury/community/concussionstorywall

Be well.

Chronic Pain

Migraines and Imitrex

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

https://migraineagain.com/imitrex-migraine-relief-try-retry/?utm_campaign=coschedule&utm_source=facebook_page&utm_medium=The%20Daily%20Migraine&utm_content=Are%20Imitrex%20Side%20Effects%20Worth%20Its%20Benefits%3F%20Ask%20This%20First

Chronic Pain

A Thankful Post

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!

Chronic Pain

Silent Symptoms of Chronic Illness – Loneliness and Isolation

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

— Read on despitepain.com/2019/03/03/silent-symptoms-of-chronic-illness-loneliness-and-isolation/

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

Rare Disease Day and What a Hero Looks Like

Today is Rare Disease Day, 2019. It is a day set aside to draw attention to conditions that may not get as much press, but can be just as deadly.

I had written a longer post today about my mom’s experience living with Scleroderma and Pulmonary Hypertension, but the truth is, I didn’t feel like I did a good enough job on it- so I will write a condensed version.

You see, this day is an important one to my sister and I. Our mom died 3.5 years ago at the too-young age of 66, from a combination of both diseases. Our mom’s final courageous act of kindness, though, was to agree to donate her heart and lungs for research.

She was a fighter her ENTIRE life- and she died a warrior. We pray that one day, her donation leads to finding a cure for these two, rare diseases. ❤️

THIS is what a hero looks like.