Vestibular Concussions
As I have posted about before, there are several different classifications of concussions. One such possible concussive area of impairment is the vestibular system. http://rethinkconcussions.upmc.com/2016/10/concussion-clinical-trajectories/
Unfortunately, this is one of the deficiencies I have had experience with since my concussion. Your vestibular system is the balance center of the brain — affect one’s ability to interpret motion, coordinate head and eye movements, or stabilize vision upon head movement.
In my own laymen’s experience- my vestibular system allows my body to figure out where it is positioned, at any given time, and also interpret movement around me. When the vestibular system is taxed, the brain automatically begins to rely more on input from your eyes, thereby exhausting that system further. Even to this day- if I am asked to close my eyes and balance on one leg, I VERY quickly lose my footing. When my accident occurred, I had two toddlers. This proved to be very challenging. Just imagine how many times we, as mothers, crouch down to tie shoes, fasten clothes, or give hugs. Now imagine again that each of the incidents were extra-taxing for the brain. It was a chore not to lose my balance each time I crouched down, which was quite often, and exhausted my brain even more.
During my time in Vestibular therapy, I worked with Dr. Anne Mucha, the preeminent therapist in the UPMC Sports Medicine program. Anne took care of me when I would wake up with spontaneous vertigo. She also worked with me when I had space and motion disorder. She put me through the paces in therapy for 9 months- and boy, it was thoroughly exhausting. I wasn’t able to drive myself to these appointments, and sometimes, my brain would be so taxed that I would fall asleep on the twenty minute ride home. In fact, I would often be so fatigued that I would have to sleep for hours after our appointments. While I wasn’t able to fully recover from my vestibular issues, I know that I had the very best working with me to help me heal, and for that, I am thankful.
A confession
Last week was full of doctors appointments- both for me and my daughter. I survived the week due to sheer adrenaline- but have since crashed and honestly am having a tough time processing everything that was thrown at me.
I need to make an appt with a pulmonologist- but after my first phone call ended up with an insurance snafu, I haven’t picked up the phone.
I also need to investigate the OMT my rheumatologist wants me to check out- but after perusing the website- it doesn’t appear they accept insurance, so it may be another difficult decision to be made.
But even though I rested (mostly) this weekend, I still feel tired, worn down, and I didn’t make those phone calls today. Tomorrow is another day, though- that is the beauty of the sun rising each day- if we are granted air in our lungs- we get the chance to try again.
So, until tomorrow….
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!
Snow Days and Chronic Illness
Expect the unexpected. That is what life is like living with chronic illnesses. With a myriad of health problems, it is difficult to predict what any given day will look like, ability wise. For a former Type-A planner like myself, it is still something that I struggle with accepting.
This week, we have had THREE unexpected snow days in a row. The Polar Vortex of 2019 captured Pittsburgh in it’s claws and our kids have had three days off. It’s been interesting to watch how people reacted to these days. I have heard frustration over rescheduled events, boredom from being stuck in the house, and irritation over broken routines. This made me think about how similar this experience is to my daily life. On any given day, I can wake up with a migraine or a pain flair that can prevent me from leaving my house or accomplishing any tasks. Some days, my brain fatigue can be so bad that even watching TV is out of my reach. Too many times I have been told that people are ‘envious’ of the extra time in my schedule, but it really isn’t something to envy- it is extremely frustrating. Perhaps I will have a better way of explaining what it feels like to live such an unpredictable life–I will just remind them of the Polar Vortex of 2019. May we all live through it to see the sunshine, and the school busses, again. 
Current situation
I like to call this “hospital chic!” MRI day.
Best laid plans..
I had planned on writing at least one post about the therapies I have tried within the past 7 years- but my body has had other plans. 
I have had a pretty sudden, severe onset of nerve pain on the right side of my upper body. It is excruciating at times- deep throbbing from my shoulder to my hands- combined with numbness and tingling throughout my right hand. Combine that with at least 2-3 appts per week for either doctor visits, PT, or medical massages- there hasn’t been a lot left in me to think about writing.
But that’s okay. My number one priority in this life is my family- and taking care of myself is an important part of caring for my family. I can not live with pain like this- it doesn’t allow me to help around the house or do much of anything. So, my focus right now is figuring out what is going on in my neck- and how to fix it. I have an MRI on Monday, so once the results are in, we will determine next steps.
So for now, I am thankful for my heating pads, ice packs, and most importantly, my wonderful, supportive husband. ❤️
Truth be told
Impending winter weather, chronic pain, and concussions
Here in western PA, we are expecting anywhere from 2-200 inches of snow tomorrow. As my family and I restructure our weekend plans, I began thinking about what life would be like if I were living solo and had to deal with a winter storm of any magnitude.
While we may joke about people running out to get milk, toilet paper, and bread- it dawned on me how difficult it would be for me to leave my house for days after a significant storm if I didn’t have my husband What if there weren’t good samaritans and neighbors to help dig me out? How long would I be stuck at home? Thankfully, in Pittsburgh, one can call upon a “Snow Angel” in times of emergency, but how many more people could be served if we all took the time to care for our neighbors?
Another concern when winter weather strikes is my fear of falling. Each step on untreated winter ground can feel like walking on a tight rope. If I were to fall and hit my already concussed head, again, how dramatic would the results be? Even if I fell on my tush, but experienced the whiplash-type trajectory of my head shaking when I hit ground- what kind of damage would that do to my brain? I still experience migraines when my head is jarred too roughly- I can’t even imagine if I were to strike it on the ground.
And finally, as your grandpa used to tell you when his trick knee would indicate a weather change, those with chronic pain often FEEL the changes in the weather more dramatically than most. From aches and pains, to increased fatigue and pressure in the head, severe changes in weather can worsen my underlying, chronic pain issues. These changes can often lead me to spend the day in bed with my heating pad, blinds closed to stave off the glare of sunlight hitting the snow.
While I still have a difficult time accepting the fact that sledding, ice skating or even skiing are forever out of the question for me, I still count myself very lucky to have a wonderful husband and children who love me and go out of their way to help ensure my safety when the weather changes.
May this be a reminder to those blessed with healthy bodies- we are our neighbor’s keepers. Don’t forget to check and your neighbor’s supply of milk, bread, and TP. Here in Pittsburgh, if you do run out, we’ll keep a parking chair out for you.
http://boringpittsburgh.com/weather/parking-chair-rules-of-etiquette/attachment/parking-chair-rules/
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.
The Concussion Chronicles 