Friday, December 2, 2011

Another medication to try

Today I saw my doctor at Physical Medicine and Rehab.  The appointment well.  As expected, things are still in somewhat of holding pattern, until I get through more of  my therapies. 

However, I am feeling better than yesterday after having a long talk with my doctor.  She decided to change my attention/concentration medication to something stronger.  The hope is that if my brain can work more efficiently during the day, it will have more energy to heal at night while I'm asleep.  She thinks this will also continue to help me get out of the brain fog. 

I'm so glad I have found such a great doctor.  She really listens to me and helps me to understand PCS better.  It feels good to talk to someone who gets it and have my thoughts validated.  (Not that the people in my life aren't supportive, THEY ARE WONDERFUL!, but they don't have the intimate knowledge of what it feels like on the inside to have PCS). 

Thursday, December 1, 2011

The Holiday Blues....Spoiler- A pity party

I'm feeling really overwhelmed and frustrated today. 

With having family in last week, I didn't clean anything while they were here, so I could focus having the energy to keep up with them.  However, they left this weekend and I still don't have the energy to get anything done. 

Today it is so bad, I can barely get out of bed.  I know, I know, I need to listen to my body and rest.  But I'm tired of doing that.  Why can't I be who I was??  This time last year, I was working at job that I loved, (despite bad management), I was halfway to completing my masters, I was enjoying the hustle and bustle of buying christmas presents, preparing for the holidays, enjoy time with those that I love. 

Today I'm stuck in bed, with a headache feeling awful all over, I have no job, I have to put grad school off yet ANOTHER semester, my house feels cluttered, but I'm too tired to do anything about it, and the UPS man delivered a gift I ordered on amazon, and it turns out I ordered something in women's rather than men's, so now I have to figure out sending it back and then finding something I like that isn't for a girl. 

I've tried really hard to keep up the holiday spirit, but when I realize how much as changed since last year, it's completely overwhelming.  Yes, I've made progress.  (And I praise the Lord for that).  However, right now that doesn't seem to be enough to make me any less angry or sick of being stuck where I've been for the past 10 months. 

I just want to be me again.  Why can't I just be "normal" again?  I hate the person I've evolved into thanks to the accident.  She's boring, slow, always exhausted, emotional  and doesn't accomplish anything meanginful because her brain won't let her.  And there is no gurantee that she'll go away. 

Wednesday, November 16, 2011

Fatigue will seriously be the end of me...

Since my last doctor's appointment, I've been trying to slightly increase  some of my activity.  He said it's important to strike a balance between resting my brain and keeping up enough activity that I continue to get back some endurance. 

Sadly, not sports endurance or cardio endurance.  Simply life endurance.  It seems like such an easy concept, just go out and live your life.  But with fatigue constantly hounding me and the constant anxiety that I will experience  a set back becuase I've done too much, its hard to go past the bare minimum. 

As any doctor will tell you in the case of trauma,  if it hurts, don't do it.  This was the most recent advice I had regarding my restrictions.  If followed that advice, I probably wouldn't get out of bed in the morning.  Daily life hurts.  Period.  Nothing is going to fix the fact that no matter how easy I make my day, I'm still going to be beyond exhausted, but unable to sleep for the amount of time my body needs, because my brain won't let me.  My ears are going to start ringing in the early evening.  My eyes are going to feel beyond strained by 3pm or so.  There's a 50/50 shot at any given moment, I'll have some sort of painful pressure in my head.  By dinner time I will stutter or misplace words and thoughts. 

Accepting that this may not change even with therapy, would not be so bad, except that I feel so painfully exhausted all the time.  Like I have the flu, or pulled a few days of almost all nighters in college.  At least then, my body would let me sleep when the time came.  The 8 hours I'm getting right now, is not helping me feel any less tired.  I wish I could sleep for a week. 

Thinking I need to build that endurance, I've tried doing more daily.  Yet this doesn't seem to help either.  Longer walks, more duties around the house, going out more often or visiting with friends.  All lead to concussion hangover.  But this time of year, its hard to cut stuff out of daily life. 

As I sit at home all day everyday, and I STILL feel like I don't have enough time to get everything done.  Between insurance phone calls, drs. appts, therapies, household duties, etc, my whole day is gone.  Why?  Because I can no longer multi-task, and it takes me twice as long to do everything, plus the many breaks I need in between things.  How do I fit in more "stuff" during this busy time of year....

No matter what I do, too much or too little, I do not see an increase in endurance for daily life.  I just feel tired, weak, and overwhelmed. 

What's a girl to do?

Thursday, November 10, 2011

Progress!! I'm making progress!!!

After seeing my main concussion Dr. last Monday, I was somewhat depressed and down hearted.  The appt started with the standard neurocognitve testing I go through every time I see them.  During the test I felt like I had done a lot better than the pervious two testings.  However, upon completion my symptoms were out of control.  For the first time in a long time, my glasses were not enough to keep out the fluorescent overload of a typical white walled doctor's office.  I sadly sat once again, looking like the party girl in hangover sunglasses. 

My Dr. said that all of my therapist report that I continue to make progress and that he is happy with how things are coming along.  However, he followed that with, you still have a ways to go, because you are still symptomatic when you brain is challenged, such as with this testing. 

He then went on to dash my hopes of at least partially freed from my concussion prison.  The good news was that on the testing that did not require a ton of visual processing by my brain or that was not under a timed deadline for response, I had improve my scores.  However, if my brain had to process too much visual information, or had to make an immediate decision on a task, my scores had stayed the same.  Further the fact that testing made me so symptomatic made him believe that I need to continue all my therapies and that I'm not ready for Grad School for the spring.  Basically he felt that it would only increase my symptoms, and I would not be able to perform at a level that I was comfortable with.   "See me in four to six months, unless you feel alot better sooner and can do more without symptoms." 

I left crushed.  Depsite the medical knowledge that their is truly NO timetable for recovery from concussion and that it is truly a wait and see game, I felt like I had failed.  But I go to three different therapies every week!  All those exercises they give me to work on at home?  I do them religiously every day, and with the tougher ones sometimes twice a day.  I'm doing everything I can, and I'm still stuck here?  What did I do wrong? 

This morning I had vestibular therapy and filled my therapist in on what had happened during my appt earlier in the week.  I also told her that vision therapy seems to really be messing with my brain.  She laughed and said, how long have you been doing vision therapy?  3 weeks, I replied.  She said, have you stopped to think that maybe this new type of stress for your brain may have hindered showing improvement in all areas?  Many of my patients when they add a new therapy in, see a decrease in their scores for a few weeks because their brain is struggling with the new skills its trying to relearn. 

The more I thought about it, it makes sense.  The past two weeks have been really a struggle.  And although some of it can be attributed to days where I over did it, two weeks ago is when I actually started working on vision therapy at home.  So the fact that I atleast stayed the same, or in some cases improved is great. 

She added that she and my main concussion Dr. feel that my vision is really what is causing me to continue to struggle, and that my scores on the testing are not necessarily a true read of my current cognitive abilities, because the test is given visually on a computer screen.  In timed portions, if I blink or need to refocus my eyes, I'm going to miss something.  So improving my vision should improve my daily life, including my vestibular difficulties. 

"Because you are making such good progress here at vestibular therapy, and most of the struggles you still have are very much related to vision, we feel you only need to come in every other week now.  You'll still do the exercises I give you at home to maintain what you've already gained.  But your focus should be on vision, since you've made such progress here."

I only have to go every other week?  There may actually come a day, when they tell me I don't need to come back at all!!  What a good feeling that is!! Praise the Lord!!

Wednesday, November 9, 2011

Someone teach me how to say No!

The holiday season might kill me. 

I haven't posted in a while because I've had a lot of "concussion hangover" days lately.  Its one of the annoying parts of having PCS.  Basically anytime I over do it, I get what I refer to as the concussion hangover.   It's the pain of a hangover... headache, nausea, feeling like you've been hit by a bus, without the fun night of drinking the night before.  Sometimes it can start during the even t of over doing it.  Other times it doesn't hit until the next day.  EIther way it pretty much ruins the next day, or two, or three, while my brain tries to recover from the overstimulation. 

my family came home for my birthday the weekend of Halloween.  Lots of uplifting events.  Dinners and lunches wiht family and friends, some shoppoing etc.  Adrenaline kept me going for most of it, although I was exhausted and headachy by mid day each day.  However, I mde it through the weekend.  Come Monday, I crashed adn was pretty much down for a week.  Still working through vision therapy, extended computer time really bothers my brain.  So I stayed away from it most of last week. 

Then last weekend, I went to a fun event at Geoff's parent's church.  A Thanksgiving Dinner Potluck.  I was so excited to go out, spend time with friends and family, etc.  However, I got carsick on the way there and underestimated the noise that would be produced by so many people enjoying dinner, talking etc.  Even with ear plugs, it was a rough on my brain.  Emotionally, it was completely worthwhile being there and I felt uplifted after being around people for the evening.  However, my brain made me pay for that evening of fun with another few days of concussion hangover. 

I don't think it's the events themselves completely that bring on the hangover effect.  Of course the overstimulation is always hard on my brain.  However, on top of that, during the day my brain is still trying to take on everyday life.  Therapies 3 days a week, different doctors appointments,  dealing with financial problems from being out of work, etc.  Phone calls to insurance companies, drs, financial institutions, etc.  Someone recently suggested a hobby.  I said, I really don't have extra time for that.  The person look at me, laughed sarcastically and said, but you have all the time in the world!  I wish that were the case, I'd probably improve faster.  But my day is filled with therapy (various exercises throughout the day at home), therapy appts, drs. appts, phone calls, regular life duties around the house, etc.  By the time I complete all that, I'm too exhausted for anything else.  All things I need to do in order to get better and keep the rest of my life that is in hold, in a hold pattern without consequences. 

Try to add in anything else, at the end of the day and I'm sunk.  ::Cue concussion hangover::  But without some outside stuff, like family events, time out of the house shopping or at restauarant I'll go crazy.  It's kind of depressing to only leave the house to go to therapy appts or the dr.  In an effort to help me stay upbeat and feeling human, Geoff and I have worked hard to find excuses to get me out of the house for a little bit.  This is great for my mood, but too much of it leads to concussion hangover. 

As the holiday season approaches I see our calendar filling up quickly.  Since this 9 month disaster began, I have missed out on many opportunities to hang out with friends, family etc.  As I continue to make slow, progress, but progress none the less, I feel I'm expected to keep up with all the commitments.  Especially since, most of them involve people who I haven't seen or kept up with during the past 9 months.  How do I say no?  Especially when that means pushing people away, and having to pick and choose between events and thus, people. 

Yet, I can't afford to take a step back in the recovery process by putting my in home therapy stuff by the wayside in an effort to conserve brain energy for different commitments.   How do I find a balance that isn't going to lead to concussion hangover?

Thursday, October 27, 2011

A New Perspective

My whole experience with PCS has given me the opportunity to create a better relationship with God.  My many years as a go-getter, time crunched, type A perfectionist had reinforced the idea that I was in complete control of my own destiny.  Apparently, the Lord thought it was time for a wake up call. 

After the first few weeks of pain killer induced numbness wore off, I spent many days angry and upset.  Why me?  I don't have time to be sidelined.  I have Grad school to go to, my kids at work needed me back, I had things to do, places to be.  Why me?  Why now?

Yet in time something pushed me to look at my life more closely.  In search for answers, I foudn a message board and forum for people suffering from PCS.  In the signature of what I consdired to be the most well versed adn person with most experience with life with PCS, was something that made me stop and think.  "Be still and know that I am God."  Be still?  Easy.  That's all I am able to do.  Anything else makes me sick and in pain.  But perhaps, maybe going back to the roots of my spiritiual beliefs would help me to better understdand the why me?.  And besides, reading my Kindle, (albeit with the font enhaced to a ridiculous size of type and the words really spread out so my eyes could focus enough to be able to read it,) was the only thing I could really do to pass the time.  So I downloaded the Bible.  I found a version that broke it up into segments in which you can read the whole thing within a year.  After a few days I also remembered a book someone had given me years ago that had daily meditations in it. 

Its been a few months since I started this spiritual journey.  I have found many passages that lead me to believe, that although it kills me to admit that I am not in complete control, but rather God has planned this life changing event for a purpose.  Just two days ago while reading about the story of Lazarus in the Gospel of John, Jesus says "Lazarus's sickness will not end in death.  No it happened for the glory of God so that the Son of God will recieve glry from this."  Having read this just coming from physical therapy, I was immediately struck by this.  It has truly been amazing how the Lord has placed the right doctors, therapists and family and friends into my life at this time to make progress possible and easier to bear.  (Just a quick reading of my PCS message board reminds me how blessed I am to leave near UPMC.  Not many have access to therapies like I have, or even doctors with realize that PCS can be long lasting and debilitating.)

Today, yet another awakening of sorts.  In my daily meditations book, the theme was about turning negatives into positives.  The example given was, instead of saying I feel really lousy with this cold, why not say I can see the Lord's healing power working in me today.  In such a light, I realize that I am very blessed, that I continue to see the Lord's healing hand at work in my life on a daily basis.  There is an abundance of glory to give the Lord for this!

Although PCS is a daily, sometimes painful struggle for myself and others sufffering, I realize I've been given many blessings.  The first being it started the spark that led me on this spiritual journey.  The second, that my relationship with Geoff is unbreakable.  If we have made it this far through this, (despite my irritablity and emotional rollercoastering, thanks to PCS), we are going to be able to handle anything put in our path and have our relationship be made stronger by it.  The third, that I've been amazed and surprised by how many friends, family and complete strangers that have supported me on my journey towards recovery and wellness.  The fourth, that I have been fortunate enough to be placed in an area where Drs are working on cutting edge treatments for such a debilitating disorder, and where I can participate in therapies that help me to take an  active part in restoring some of what I lost when I experienced a brain injury.   The list could go on and on. 

So praise be to God for His healing hand, working in me daily!  All the glory is his!

Monday, October 24, 2011

Hey... It's your brain... You're being punished, and I'm not telling why

Sometimes it still astounds me how regular daily life can sneak up and kick me in the head. 

A few weeks ago, my dr. increased a medication to help me be more alert, less tired etc.  I also started taking larger doses of B vitamins and fish oil.  Not a huge difference, but it's helped somewhat and any step in the right direction is a good one. 

Feeling slightly less exhausted, I thought a quick run to the grocery store with Geoff would be a nice way to get out of the house Sunday morning.  It was wonderful to be able to use my new glasses and not have to talk around the store looking like I had a hangover with my sunglasses on.  I felt great through going down the aisles, getting the things we needed, etc.  Then like a ton of bricks, I hit the wall.  Dizziness, feeling overheated, naseous, and that immediate lay down or your'll pass out and fall down feeling.  I went straight to the car and laid down with the AC on, (it was 57 outside but the sun was killing me), and Geoff finished our shopping. 

I was really upset because this hadn't happened in a while, and I kinda thought I was past this, at least for minor things that I have been able tolerate for the most part.   What did I do to cause such a huge flare up?  It doesn't make any sense.  I blocked out my triggers, (ear plugs and glasses) and it was only a short trip... the analysis continued all afternoon.  Why did this happen??!?!!?

Today as I look back, I realize that I can't dealing with the brain is never cut and dry.  If you do x, you'll get y, just isn't how PCS works.  Symptoms are unpredictable.  The best I can do is try to stay away from things that are guranteed to get me, and take my chances with everything else.  Is spending an entire afternoon trying to figure out what caused something I have no control over, is a waste of time, and precious, precious brain energy. 

So Brain... if you feel the need to be a tempermental diva, have at it.  I'm done trying to guess what your drama is about.  Its a waste of time :)

Saturday, October 22, 2011

A Tale of Two Octobers

My first vision therapy appt. was today.  The highlight was receiving my new glasses that have anti-glare and a thing that filters out fluorscent light, (no more dark, glam girl sunglasses in the grocery store! Sweet!).  They are making a couple of things easier, especially using the computer.  Not nearly as much eye and brain strain as before.  :)

Since it was my first appointment, my therapist basically did a batter of tests on my perceptual vision.  A lot of "look at this picture, remember it, find it in the next series of pictures."  Ironically, this is one score on my Impact Testing that has remained abysmally the same.  For whatever reason, I can't remember the details of whatever the object is when it comes time to recall it and identify it 20 seconds later.  I scored in the 1st percentile.  Their goal is eventually I'll be at the 50th.  That's average.  

I think that's one of the hardest things about all the testing and data that comes from measuring my ...(can't find the word).....oh, measuring my progress.  The goal is for my scores to be inline with what is "average".  "Average" won't make me who I was.  I was way more than "average" in a lot of things, especially cognitively.   Now I feel like, the best I can do is settle for "average."  I don't want to be average.  I want to be me again.  

However, it was nice to get out and about for once, so we stopped at Target so I could get out for something other than therapy.  I should have thought it through before I decided on target.  

Target has an AMAZING dollar section, especially when it comes to seasonal items.  It used to be my favorite place to get stuff.  As many teachers, and behavioral therapists will tell you, it's one of the best places to find reinforcers for children, that don't cost a lot for the cash strapped social service worker to pick up on their own.  While working, I frequented this section at least weekly, looking for something that might entice this child or that one to push a little further towards a goal they were working on.  It never failed me.  I was always finding something that made me smile as I found it, made the child want to work for the said item,  the child enjoying the item, and my being happy that we'd made it a little be further down the path in their therapy.  A lot of little little moves forward add up to big changes that make a difference in the life of a child.  

Anyway, upon walking into Target I was bombared by the dollar section.  It's purposefully the first thing you walk through upon entering the doors at most Targets.  Having just come from visual therapy, and knowing my next big round of testing with my main concussion dr. is coming up soon, my heart deflated.  As I saw all the Halloween do-dads and small toys, I realized that this time last year, I was picking up stuff for our classroom Halloween party.  (We had a great time that day!)  Now here I stand with my fancy anti-fluorscent light glasses, knowing that in 2 weeks when I see my main doctor, there is a fairly good chance, that my brain is still outlawed from things of my previous life:  work, Grad school, driving, etc.    Its kind of heartbreaking when I compare last October to this one.  And I miss my kiddos from school so much it hurts.

But, again I am thankful to still be here on this earth, with God's grace guiding me to the therapies and doctors I need.  And the support of all my family and friends. Just gotta keep on, keepin on.   

Friday, October 21, 2011

A much needed breath of fresh air :)

I spent the day babysitting Geoff's nephew today.  Definitely a lot more busyness than I'm used to at this point.  However, it was a wonderful, fulfilling day anyway. 

As is typical when I get involved with busyness,  my symptoms have been flairing all day.  (Deb & Missy keep reading!  Our boy was in good hands all day, and its ALWAYS worth it for me!)  But like any other day, I'm still exhausted (remember it's after 3pm afterall.)  I will inevitably suffer tonight for such a busy day.  However....

It was soooo good to take care of someone other than myself for once.  I wasn't stuck at home all day with just my brain and my dog.  At times it was really tiring and headachy, but well worth it to have someone other than my dog look at me.  And unlike the dog, a 9 month old laughs, giggles, makes faces, cuddles, and seeks out interaction from me. 

Despite my ears ringing and all that will come with it, I haven't felt this uplifted in spirit in a long time! It felt nice to be needed for a while, rather than being the needy one. Now if only he could give me some of his developing brain matter to redue whatever whent wrong up there! ;-)

Missy-  The whole symptoms thing I'm used to after 7 months, I'll be good by morning, so don't worry about it!! Also, I don't plan on stealing your son's grey matter.   However, I may have to steal him once in a while for a mood booster :)

Thursday, October 20, 2011

How are you feeling??

"How are you feeling?"--  What a loaded question for someone with PCS. 

I always get confused when someone outside my concussion safety net asks this question. To the outside world, I look like a relatively functional adult woman.  But that's because all of my symptoms and struggles are happening on the inside and are invisible to others.  Being truthful to this question, "I feel like garbage, but thanks for asking!" and people either find it unbelievable that after all this time and "how good I look" that I could feel so terrible... OR... an onslaught of guarded pity, that basically functions as "Oh dear, that's awful."  Not telling the truth, trying to avoid these two undesired consequences, leads to something like, "I'm fine.  I feel better than I did a few months ago."  Yet this puts me at risk of someone thinking I'm back to my "normal" self.   This will lead to expectations and demands that the post concussion me, can not currently meet.  (And some soul searching that I realize I can't meet those expections of the old me, and then the scary gloom and doom of what if?  What if I never am as good as I was...) But I digress..

However, I find answering this question equally troublesome with those closest to me.  On the rough days, being honest means I am normally pushing someone away.  For example, when asked today if I wanted to go out to dinner, I responded "how about Saturday?  I think having so many drs appts this week has worn me out."  Taken a step further Geoff responded, "Well you will be babysitting tomorrow, and then have vision therapy on Saturday, so lets see how you are feeling first before we make any plans."  (Insert the fact that I am EXTREMELY blessed to have such honest and genuine support, as this was a sincere statement.)

Its hard to admit that my PCS controls a lot of the "normal life" that I used to enjoy.  What's harder, is knowing that it effects someone else's life so much.  The opportunities other people miss out on because my brain can't handle the overload at that time.  I hate that other people have to suffer right along with me, even though their brain is healthy.  This leads me to feel guilty a lot of the time.   I know all the people in my life are willingly making these sacrifices because they love me and care for me.  However, it doesn't make me feel any less guilty. 

Back to what I was saying, (Ughh...did I mention PCS makes you scatterbrained and somewhat ADHD? lol)  Even with those closest to me, I struggle to tell the truth sometimes whether good or bad, in regards to my symptoms.  If I'm feeling crappy, which is pretty frequent any given day after 3pm, my honest answer would be "I'm exhausted, my head hurts and I feel disoriented."  Yet, who wants to listen to that all the time?  Patience runs thin for a Debbie Downer.   However, if I say things are good or I feel closer to normal, again comes the possiblity that people are going to expect me to be able to do things as if there never was a car accident.  Which again sets me up for failure, brain pain, and the always on my mind question of "Will I ever be able to do said thing, just as good as I used to, without feeling so awful?"

So the long and short, is that my PCS symptoms fluctuate based on exertion level, time of day, amount of sleep the night before, how noisy the environment is, if their is a bright light on somewhere, whether I'm hot or cold, how much stress I'm currently under.... the list goes on.

If this comes across as a Debbie Downer post, I apologize.  Its just more of a realization I came to after my conversation about dinner out haha.

So this is my story, and I'm sticking to it...


In March of 2011, I was traveling home from work on a sunny afternoon.  I came to a stop at a local merge point, waiting patiently with the truck in front of me for a space in traffic to merge onto the road.  A young driver came up the ramp behind me, assumed that myself and the truck were going to merge and kept his foot on the gas to sneek in behind us before more traffic came.  He neglected to realize we weren't merging yet and hit me without even tapping the breaks.  My trunk was crunched into my back seat, and I slammed violently into the truck in front of me.  And now, 7 1/2 months later, I am still struggle daily due to that driver's mistake. 

On the scene, I had a massive headache, but waived away medical treatment thinking I wasn't bleeding and nothing seemed broken.  A local tow truck driver took me and the completely crunched car to a local garage.   On the way I started to feel groggy and extremely nauseous.  I called my boyfriend to come pick me up and made the decision to go straight to the emergency room. 

After slipping in and out of conciousness during triage, I was taken immediately to get a head CT and some x-rays of my neck and hip.  (I had foolishly thought if I applied my brake with all the strength in my leg as a I braced for impact, I could prevent hitting the truck in front of me after the impact.)  The Dr. said I was lucky that I did not having any bleeding on the brain and sent me home with a concussion diagonsis, a strained hip and some pain medication. 

As I continued to try to recover, the symptoms got worse:  severe headaches;  nasuea;  ringing in my ears;  sensitivity to light and to any noise;  severe dizziness upon any type of movement;  pain in my neck and back;  etc.   After two weeks of complete bed rest and no improvement, but worsening symptoms my primary care sent me to a neurologist.  I was diagnosed with Post Concussion Syndrome (PCS). 

So this is my story of what living with PCS is like.   It is my goal to bring hope to others suffering from this very debilitating condition and to bring awareness to the masses who have no understand of what it truly means to have PCS.  Believe it or not, its not "just a concussion" or something that "Wow, you look good so you must be feeling better" type of thing.  We are the invisible walking wounded. 

Some cautionary notes:

I have decided to leave errors in grammar, spelling, usage etc in my posts.  Although very unlike the academic go getter I was before my accident, I feel it pays tribute to my cognitive struggles at this time.  So please don't see this as a lack of effort in checking my writing, but as a personal choice to accept myself where I am at in my recovery.

Second, my ability to post is based on my current level of symptoms.  I can only spend limited time on the computer due to the overload in visual stimulation and glare from the screen.  Hopefully with my new glasses, (anti-glare and film to filter out fluorescent light) and vision therapy, I will be able to post more frequently.