Sunday, January 29, 2012

Great Weekend

This was a not too bad weekend.  I got out of the house.  Met a TBI rockstar.  And the Christmas Tree is finally down!!!  Thank you Hubby!  I personally think we should have left it up until the 31st just to make a point.  Just kidding Honey!

Friday we went to the mall for our usual Chinese Chicken and Rice Friday night dinner (Bourbon Chicken,we call it Chinese Chicken and Rice because when Bubby started eating it he couldn't say Bourbon and we weren't sure if it was appropriate for him to be telling people about bourbon at the age of 2 or 3.)  At this mall they have an awesome bookstore (large chain bookstore) that has a great children's section.  Bubby loves to go there.  As the psychologist said I need to find things that are quiet to do with Bubby, coping skills.  The bookstore is quiet and they put in this new Lego table.  He loves it and I like to watch and help him build towers.  And, we get to meet some new awesome kids.  The chairs at the table are these big, squishy cube chairs.  When you sit on them you sink to the floor and then I can't get back up.  Even harder with PCS.  So, I just laugh and have my husband help me up.  Moral of Friday's story:  Legos, we have them at home, great quality time with Bubby and no big, squishy chairs.

Saturday I got to meet John Byler who made that wonderful video from my previous post (this is where I meet the Rock Star).  He wrote a book about Traumatic Brain Injuries (TBI), "You Look Great!" Strategies for Living Inside a Brain Injury. I've read the first chapter and I love that the print is big and written in plain English!  I only got to talk to him for about 15 minutes and wish it could have been longer. This is the first time I have spoken to someone face to face with a TBI.  I was overwhelmed and wish I got him to sign my book.  I may need to find a support group, have to remember to look that up.  Saturday was also Bubby's last swim meet.  He has improved so much although we really need to work on coordination.  Arm and legs need to work together.  Swim meets are really loud!  Lots of yelling and horns blowing.  I go and wait in the lobby and then Hubby sends me a text when Bubby is ready for his race, he only does 2 races, backstroke and freestyle.  There are as many as 40 races per meet.  So proud of him.  He also got to go to his favorite place to eat and when we came home it was so nice out all the kids on the block were out playing.  So he ran around for another 1-1/2.  He was tuckered out!  Yes energy expelled!!

Sunday was OK.  I am really fatigued and all I wanted to do was sleep.  We took Bubby to a playground or I should say my Hubby took him and I slept in the car.  I couldn't keep my eyes open.  We then went to the pet store.  Big mistake.  I love animals!  If I had the money I would have bought everyone of them.   I left with tears in my eyes.  I also can't watch animal movies, I will go through a box of tissues in one sitting.  Maybe in another post I will tell you about my cat Avery Marie and share some pictures.  When we came home I fell asleep again.  Feel better now.  Could be the pain medicine making me so sleepy.  Now I am watching one of my favorite shows with Hubby "Finding Bigfoot".  Yes, I love this show.  I don't know why I love it, but they better get some real proof.  It reminds me of a show I would've watched with my dad.  He probably would have loved this show.  And my husband makes these awesome comments during the show and makes me laugh!

Update on (Sister-in-Law (KA):  KA had her hip surgery today.  She is resting but her blood pressure is low so they have moved her to a floor with less patients so they can keep a better eye on her.  She was unable to have the replacement hip (muscles and tendons are too tight and a replacement would have put a strain on her spine and she may not have been able to walk at all) so she is going to have rehab and may have to walk with a walker or cane.  She may also need to put a raiser in her shoe because her leg will be shorter.  So please keep her in your prayer or good thoughts, we really appreciate it, we worried about surgery and she pulled through.  She is a trooper.

Saturday, January 28, 2012

Awesome Explanation of PCS

The video link I have posted below is exactly how I feel.  People tell me "you look fine" but I am not fine.  They just don't get that my world is spinning all the time.  I want to thank this man for stating this so eloquently.  It's hard to explain to people exactly what this crazy syndrome is and how it works.    This video says it all.  I had to watch it over and over.  This was made for the Neuro 2011 Film Festival.

Update on my sister-in-law:  They did a MRI last night and realized that since this hip injury is an old fracture and her muscles and tendons were shrinking.  So when they operate they will go in and try to see if they are able to stretch them back out again and replace the hip.  If not they will have to repair her hip the "old" way and her one leg will be shorter.  She may require special shoes.  But you know what, that is just fine, she will at least be able to walk.  She has had a tough year with injuries because of the osteoporosis.  She broke 2 vertebrae in her back last summer and her shoulder is dislocated.  They won't operate on her shoulder because she is not in that much pain and the surgery will be too traumatic.  The doctor's also said her shoulder could have been like that for a long time and nobody knew it cause she never complained, poor thing.

Thank you for all the prayers and good thoughts.  Please keep them coming until she is safely out of surgery which we do not know when that will be.

Friday, January 27, 2012

Update on Sister-in-Law

My husband went to see his sister tonight.  We were told she was having the partial hip replacement today, but as they did more x-rays they found she has fractured ribs also.  They are going to give her and MRI and see what's what.  If they deem that she is in good enough health they may operate as soon as tomorrow.  She is in traction right now.  So please keep the prayers, good thoughts or whatever coming in.  My husband said she looked and sounded good.   KA is a trooper and has had many medical issues and made it through all of them.   Thanks!!!

Thursday, January 26, 2012

Hard Day Today

Not a great day today.  Not feeling great.  I feel like freaking out today, it may be a Xanax kind of night.   My son is having one of those days when he feels the need to be right in my face.  And the more I tell him the more he seems to do it.  Ugh.  He's pulling on me, putting his feet on me, trying to trip me, keep grabbing my bad arm and pulling it every time I put it near him.  I move, he moves with me. Every sentence starts with Mommy.  I am tired of saying his name, tired of correcting him and saying the same thing over and over. It's not like he does not get enough attention.  He's an only child.  I know this sounds horrible but with the PCS it amplified like 100x's.  So I am just trying to cope.  And is it normal for a 7 year old to be constantly hungry.  We had dinner, then he had a donut for dessert and then ice cream and now an apple?  Growth spurt maybe??

So on top of that I am waiting for my husband to come home.  He is at the hospital visiting his sister.  We got a call last night that she has a broken hip.  We'll call his sister KA.  KA has Downs Syndrome and has osteoporosis.  About a month ago she fell out of bed and hurt herself, they did x-rays and said nothing was broken. But, she was having problems with her knee and she was getting physical therapy. Today she is in surgery getting a partial hip replacement.  We are not sure if she had originally from falling out of bed and they missed it on the first x-ray or if this is a new injury.  So please pray, send good thoughts or whatever you believe in.  Thanks.

Sorry not a great post today.  Hopefully tomorrow is better.  

Wednesday, January 25, 2012

Check out my friends post

Check out my friend's post at

I really don't know what to say.  I've never heard of this.  I am confussed.  So many questions.  I can't even imagine getting this done.  The pain of it all.

Tuesday, January 24, 2012

New Psychologist

Ever since my neuropysch test I have been going to see a psychologist.  I am not the type to talk to someone about my feelings.  My whole life I've been taught to repress my feelings.  I went to a psychologist the first time I dealt with depression and she blamed everything on my mother.  Yes the reason why I repress my feelings.

I've been going to a practice that was recommended by my primary doctor.  I started off with this one lady and she was nice, but all she did during my visits was talk about her sick dog and eat her lunch.  She always asked if I minded if she ate, and me being that type of person said "of course not".  I saw her for about 3 months.  I then got a call from the receptionist telling me she was no longer there and would I like to see someone else.  Sure why not. 

I met with the second psychologist and she was great.  She took control of the appointment and we made a plan.  (I was really messed up when I met this one, it was right after I went to see the doctor at the best hospital in the city and told me "Yeah you have PCS and it could last for years and there is nothing I can do for you".  I was a wreck.)  She hinted that the first one may have been let go because she talked about her dog, someone obviously complained.  I made my 2nd appointment and had to cancel because I got a stomach bug.  I called after the holidays to make another appointment and was informed she left the practice would you like to see someone else.  Sure why not!!!!!

OK!  So I go today not feeling real confident about this whole experience.

I meet with the third lady and she is really nice.  Her office is the first lady's office.  She said I kinda bounced around a little and don't worry I'll be staying a while.  She asked great questions.  I'm feeling a little better now.  She told me to come up with some coping skills that will help me spend quality time with my son.  I explained to her that I am light and noise sensitive and my son is super loud, he takes after his father (I'm gonna hear it for that one).  I have to come up with some quiet activities for him and I to do together. We have done some craft projects together.  He likes to decorate his room for each holiday.  We just made a bunch of hearts for his room and cut them out.  She also suggested playing a game with him like Uno.  I will give this a try he likes Uno. I also got some educational games for my phone and I'll play those with him.  I go back to her in three weeks, hopefully.

Any suggestions?  Remember quiet activities.

(PS:  I typed this entire post with my cat sleeping on my arm!!  She loves my laptop.)

Monday, January 23, 2012

The Pill Box

My pill box is another thing I hate about my PCS.  I really just started using it not too long ago.  It's a simple one, just labeled with the days as most medicine I only take once a day.  But as I have some memory issues I was forgetting if I took certain pills.  The reason I hate it is, I feel like I fill it up all the time.  I look at and go "Damn I just filled this".  Another week has gone by way too fast and I have nothing to show for it but an empty pill box.  Time is passing by and I am just filling up my pill box.  It makes me realize that this thing is taking up way too much of my life and needs it to go AWAY.  No more pills. 

I hate medicine.  Freaks me out.  Always afraid of drugs interacting with each other.  Whenever the doctor gives me a new medication I always make her check interactions.  I just got a medicine for migraines and it is ibuorofen based.  I am already taking an acetametaphine based pain reliever for my compressed discs and shoulder spur.  And of course she tells me they can be taken together.  Now the ibuprofen medicine is sitting on my counter mocking me everytime I look at.  Like it is saying "Chicken, just do it". 

Whenever I take a new medicine I always get a little panicy.  Like I can feel it going through my veins.  Then I freak and feel like I am going to faint or someting weird like that.  Of course it is just panic and it eventually goes away.  My primary doctor tells me I am one of the people who just really knows their body really well and can feel all the little changes.   This is one of the reasons I never did drugs and the movie Less than Zero.

Am I nuts?  Or do others experience this too??  Ceretain drugs don't freak me out.  Over the counter drugs I can take with no problem, but as soon as it is in that little bottle from the pharmacy.   I can take perscritption strength pain relievers like ibuprofen or acetametaphine, they don't bother me at all.  But when you start giving me extra strengths or different variations of those, that freaks me out.

I'm not crazy.  Really.  Just don't like medicine.  And my pill box.  Only the elderly use pill boxes.

Sleep and Rest Sleep and Rest

I am not a writer.  There I admit it.  Also, I am not a college grad either.  I am just this chick tyring to reach out to others in similiar positions.  Not just people with PCS, all different illnesses and disabilities.  Trynig to parent normally is challenging but parenting with an illness or disability is exceptionally challenging.
My thought for today was I will be talking about things I hate about having PCS, being stuck in the  house and raising my son.   Gonna try not to make it a Debbie Downer thing.  This may take more than one post. I am also hoping that people without PCS will be able to relate.  Please let me know if this helping or if you have similar experience, please leave a comment or become  member (if that happens, you have no idea how giddy I will be).

Sleep Pattern
They say the only cure for PCS is rest and sleep, rest and sleep.  I get it.  Before I bashed my head on the door, I was a person who loved to sleep.  I come from a family of sleepers and nappers.  I'm sure my friends find it ironic that I have this thing now and get to do the thing I love most.  I'm sure some of them are saying "Snap out of it" or "take a nap".  It's not that simple.

All I have to say is, too much of a good thing is not what it is cracked up to be. I am missing out on so much stuff.  The medicines I am currently taking make me very sleepy.  Sometimes I find it very hard to hold my head up and my eyes are ready to roll into the back of my head.  So I try to keep it together, especially if I am out somewhere.  I usually don't go out since this happened, but when I HAVE to it sucks.  People are talking and I am just trying to get through and not make an ass out of myself because I can't concentrate on what your saying.  I just smile and nod.

Here is another example.  This weekend we had a scheduled play date with my husband's cousin and his little girl.  I couldn't wait to go, I love visiting with them, they are funny and I usually can have a good laugh.  Well I woke up on Saturday and could not get out of bed.  My husband got me some breakfast and I took my medicine and fell back to sleep. The headache and light sensitivity didn't help either.  So I missed the whole day.   I didn't get out of bed until 9:30 at night.  The only good thing was the house was quiet.  They didn't get home until very late.   But, my son had a ball and I missed it all.

I guess this is that fatigued feeling everyone talks about.   Sunday didn't go much better but at least I got out of bed and was able to hang with my son for a while.  We found fun, educational math games on my Iphone together.  He was drawing pictures of birds, and I have to admit they weren't too bad.

OK the biggest issue I hate about this PCS sleepy stuff is the problem that other people have with my sleep pattern.  People tell me that my sleep schedule needs to change.  I usually start my day at 1:30 PM and I eat my breakfast, shower, pick my son up from school, homework, dinner, some play time, then bath and bed for Bubby.  Then my husband reads him a story and he comes down for a little time for just the two of us and usually goes to bed because of work in the morning.  So here am I sitting on the couch until 3:00 in the morning at least.  Yes, there a reason I do this.  The light sensitivity in my eyes is not a great thing.   I try to shield myself from it as much as possible.  The majority of time that I am awake, it is dark outside.  This schedule also gives me the quiet that I need. 

Most importantly this schedule gives me quality time with my son, he gets the best part of my day when I am able to be the most active.

Family members want me to get back on a normal schedule.  I would like to, but on those days that I have a doctor appointment or a test, it usually is early in the morning and then the rest of my day sucks because my eyes are hurting and eventually the headache comes.  So until things improve I will keep this schedule.   I don't know what the big deal is, it is not affecting their lives so don't worry about. I believe they think if I get on a normal sleep schedule this thing will magically be gone.  I hate to disappoint them yet again.

My one friend always told me I was allergic to the sun, maybe now I am.

Anyone else with a crazy sleep pattern?  It's not that I can't sleep, I take something for that.  It's the schedule I am on, no one likes it.  Any one have problems sleeping??  Feel like you are missing out?   I would love to hear from you!  Begging for comments!!!  I scream like a baby if I actually got a comment!!!

Thanks for reading!

Friday, January 20, 2012

Crazy Needle but not a Needle

I went to my neurologist today for a checkup and went in with a migraine.  My eyes were killing me from the florescent lights and the bright sunshiny day, they were nice enough to turn off the lights in the exam room and I could take off my sunglasses.  As I was talking to her and updating her on my symptoms she offered me this "shot" to relieve my migraine.  As she is explaining it to me I got more and more terrified.  It's like a needle but uses a burst of nitrogen to put the medicine right into your system and works very fast.  It is done on the stomach, it needs some fat to absorb the pressure I guess.  My doctor said she had given it to her husband but administered it in his thigh, not enough fat.  Well let me tell you how bad this hurt!!!  It sounded like she shot me.  I tried to contain myself and not scream, but I let out a little eeek!   It was so worth it.  The medicine worked so fast.  I have pain in my eyes from light sensitivity and a headache, everyday.  I have been pain free most of the day, about 9 hours.  As I am typing this the brightness from the computer is starting to get to me.

I don't know how often you can get the shot.  I think she said something about a script.  I'm not sure if insurance will cover the script.  The needle I got today was covered by the office visit.    I have to admit I did not take the script.  I don't know that I could do that to myself.

So sorry I did not ask more questions.  I think I was in shock from the pain.  I do know the medicine in the "shot" is similar to Maxalt.  It's a rescue medicine.  I have to go back and pick up papers for disability and will try to get more information.

I have headaches everyday, but not too many migraines.  Today was a migraine day.  I would highly recommend this "shot" if you suffer frequently from migraines and you can take the couple minutes of pain.  I would ask your neuro doctor or whomever is treating you migraines.  I put in a link below that I found. 

Hope this helps somebody.

Crosby, Concussions and You - Pulling No Punches - August 2011 - Pittsburgh, PA

This post is very helpful in explaining how post concussion works.  It takes time to heal!!  Read full story at link below.

Crosby, Concussions and You - Pulling No Punches - August 2011 - Pittsburgh, PA

Out of Order

This is totally how I have felt for the past week.  The trip to New Hampshire has totally set me back.  Thank my lucky stars that my husband is home on vacation (not really a vacation, an unpaid furlough per the contract for his job).  I have been in my room (cave) for most of the week.  Only coming out at night, when my son is getting ready for bed and the quiet will begin.  That sounds awful.  I love my son to pieces but this week the noise and activity level was beyond my coping skills.  He did come into my cave and visit and promptly head-butted me twice.  Accidentally of course.  I was trying to make some effort to play with him on my bed and it resulted in the head-butts and a "Sorry Mommy".  Which kills me when I hear it.  Most mommies could probably take a head-butt or two with no worries.  Me?  Freaks me out when anything comes even close to my head.  PTSD?  Maybe.  I'll ask my doctor.

I also figured I might need some kinda plan to follow about what to write on this blog.  I wanted to get the word out on Post Concussion Syndrome and it's symptoms.   But I also want to relate to other mommies who are having the same issue as me and maybe other medical issues that prevent them from being an active parent.  I'm not meaning bad parent or absent parent, just a parent not being able to do what they really want to do because of their issues.  I will start working on topics.  Willing to take suggestions.

The main issue I have is feeling guilty.  Guilty that my son feels the need to tell everyone "my mommy has a concussion".   This is humiliating for me, that he feels the need to "defend" me, or make excuses for me.   I mean I look normal, I think.  I squint a lot and I walk kinda funny (like I am walking on top of gelatin).  I try to be as active as I can with him.  I pick him up from school, I help him with his homework (it is 1st grade stuff, if he was older we would need a tutor).  I have sent things back to school incorrect, especially the math.  How embarrassing, 1st grade math and it looked correct to me, but I have a brain injury.  His teacher knows this cause he told her

He is also doing great in school, academically.  When we got report cards in December he was doing Outstanding (the don't do A,B,C anymore, O for Outstanding).  His behavior side was good, but needed improvement.  Then he got in trouble about a week ago.  His teacher, in front of his whole class, called him a baby.  Yes we had an issue with that and when my husband went to talk to her she was ready to jump down his throat.  He has been an issue since coming back from the Holiday Break.  Getting out of his seat, interrupting her, and clingy with her.  So we are working on this.  The reward calendar has started.  So far so OK.  Not good, but OK.  We also told the teacher that she needs to communicate better with us and not let it get to the point where she is so frustrated.  He was so embarrassed he didn't want to go back to school.  This coming from the kid who told us we are not allowed to move until he is out of 8th grade because he loves his school that much.

I have noticed a difference in him.  I can't put my finger on exactly what it is.  He is more out of control, louder, more active and more "in your face".  Really not sure if he needs to get back in the swing of things or if it is something else.  Also some normally scheduled activities had to be cancelled and maybe that threw him off.  He is on the school swim team and they have cancelled practice since coming back from the Holidays because there was no heat in the pool.  He goes twice a week and loves it.  It really gets the energy out.  My husband and I are working on additional ways to get the energy out.  My husband was going to take him hiking with cousins this weekend at a State Park, but now we are expecting snow.  It has now turned into a regular play date.

To sum up today's post:  I am totally out of order from the NH trip and feeling guilty for not being able to be the parent I want to be.  I think my kid is pretty awesome.  He's smart, loving, outgoing, friendly, and super cute.  I just want to take part in the awesomeness.

Tuesday, January 17, 2012

Trip to New Hampshire

Had to go on a weekend trip to New Hampshire.  Yes, had to go.  My uncle lives in New Hampshire and has been recently diagnosed with Alzheimer's and cancer of the bone.  He has been given a year to live.  My mom needed to see him.   My husband and I offered to drive her up because there is no way she could have done this on her own and my siblings have a lot on their plate as well.  She needed to see him before he gets too bad with the Alzheimer's. I also really wanted to see him one last time as I probably will never get the chance again.

We left on Friday (the 13th of course) and drove the 7 hours to Nashua, NH.  I was really worried about my son making the trip.  He has never had a car ride that long and sometimes gets car sick.  He did great.  I was worried about myself making the trip, cannot be thrown out of my routine.  He did better than me.  We arrived around 10:00 on Friday night.  We got ourselves settled and went to bed.
Saturday morning was clear and crisp.  29 degrees to be exact.  We had a great complimentary breakfast then off to see my uncle.  I was prepared for the worst.  We were told he lost a lot of weight and he rambles on about the Irish.  Well when we walked in I was surprised.  He knew who we were and was sitting up eating his lunch.  Don't get me wrong, he wasn't the uncle I knew, but was way better than I was expecting.  Relief, for me and mostly for my mom.  He smiled and greeted us and joked with my mom.  My husband and I took our son back to the hotel so my mom could visit with her brother without all the distractions (yes my son definitely would have been a distraction).   My son was so excited the hotel had a pool.  That was all he talked about was swimming.  So while they were swimming I watched TV in the nice dark part of the lobby by a fire. 

My mom called and was ready to be picked up.  All of my cousins came to see her and she really enjoyed that, but couldn't really talk to her brother as he cannot keep up with all the conversations.   I went to the pool to get my boys and get them ready to go get her.  On the way to the lobby my son says his eyes are burning, they were getting redder by the second.  So we got a towel and rinsed them with water.  (What happened was the pool is salt water as it is easier to maintain, never heard of that before.)  He told us they felt better and we hop in the car.   Got to see 2 of my cousins which was super cool. We stopped to have dinner on the way back and my son fell in love with our waitress and left his phone number for her (a fake one of course).  And this totally took the focus off of his hurting eyes which were looking better by the minute.

When we got back to our hotel, of course my son wanted to go swimming again.  We insisted he wear goggles.  Aces!!!  It worked.  Downside of letting him back in the pool, he swallowed so much water he threw up on the middle of the night.  Awful!!  In his hair, complete bed change, pajama change, shower, the works.  Ugh!

Mom was undecided if she wanted to go back the next day to see her brother.  I suggested it might be a good idea.  There will be less people there and she could talk to him more, plus my aunt said he is better in the morning.  She decided when we woke up on Sunday that she would like to go to see him before we leave.  Again he recognized who we were and was pretty clear with his speech and what he was trying to say.  We said our goodbyes and left.  It was hard for me to walk away, can't imagine how hard it was for my mom. 

We drove the 7 hours home.  Got a little lost around Palisades.  My son did great again.  As a reward my husband took him to the movies today.

I on the other hand did not do well again.  The trip really took me out of my normal routine, of course, and put me in a not great place with my Post Concussion Syndrome.  I was dizzy, unfocused, physically shaky, and anxious.  On the way home I started to get really restless.  My bulging disc in my neck was hurting, my shoulder was hurting and I was getting claustrophobic.  PANIC ATTACK.  We got to a rest stop in Montvale, NJ and there I am crying in the middle of the rest stop.  My mom started talking to me and making me look at different things, basically changing the subject and it worked!  Yeah for mom!  I calmed down and was able to eat and make it the rest of the way home.

I spent all day today in my cave/bedroom.  Slept  most of the day and still feeling bad, well more than normal.  Tomorrow I will try to get back to my regular routine and hope I can get back to my "normal" post concussion self. 

I have to thank my super, supportive husband for doing all the driving and arrangements!  He really did great and cannot thank him enough!

Note to self:  no long road trips in the foreseeable future and one of my siblings will have to take her next time.

Thursday, January 12, 2012

How'd that happen???

I was unsure what to talk about today. Let's put it this way. I had a complete meltdown that I lost the entire blog. It was gone. My wonderful husband to the rescue and fixed it all up after my panic attack (a frequent symptom of Post Concussion).

I am still trying to figure out what to write about first. I really want to get the message about Post Concussion out there. Some information is coming to light with rules for High School students showing signs of concussion. There are two prominent NHL (Hockey) players who are currently dealing with the syndrome. One has even tried the hyper-baric chamber and was not successful. And last football season, many players were getting concussions. Which my mom didn't understand cause they would come back and play a week later and I was still dealing months later. "Mom they had helmets on and I did not!" Plus I hit my head right on the soft spot. Ouch! Then she kinda understood, she still really doesn't get it.

When I went to PennMedicine the told me that it is coming to light in the medical society that it does not take a major blow to the head for a person to receive a mild concussion and continue to suffer from Post Concussion for years. Well here we are over a later and although things improved here and there, I am still not right. Here are some symptoms of Post Concussion Syndrome:

  • Headaches
  • Light Sensitive/Noise Sensitive
  • Dizzinesss
  • Numbness
  • Decreased Coordination or Balance
  • Confusion
  • Slurred Speech
  • Fatigue/Sleepiness
  • Mood changes/Irritability
  • Shorter Attention Span
  • Memory Loss
Do I have all of these symptoms? Yes at different times though. I try to stay in my house where I know my triggers and try to keep them minimal. That occasional outing to a store or a walk at the mall or anything out of my normal routine usually turn ugly and may refine me to my cave for a day or more. There is no schedule of when they are going to show up. Just happens.

The above picture is exactly how I felt when I mashed my head on the solid wood door. I literally saw stars. Everything went blank for a second and then I tried to reason with myself that it just didn't happen. Don't scream and wake up my son. Go downstairs and fold the laundry. And so I did and started to cry and then my husband came downstairs and asked what was wrong and I told him and he says "I heard it" and he was 2 rooms away. So we iced it up and got some kind of pain med and went to bed.

Got up for work the next day really tired. Drove in, ate my breakfast and felt horrible. I decided to take a half day off and go home and rest and that will fix everything. A woman that I work with had years of knowledge from work with neuro docs. She told me I was squinting and walking funny and I finally told her I hit my head and I am going to go home and rest. So she comes back to my desk and does the follow my finger from left to right and up and down. Well I didn't make it through. So she went and got my boss and they insisted I go to the ER for a CAT scan. When the ER nurse said I had a mild concussion and sent me on my way with no restrictions, I though "OK back to work tomorrow!" Cool! About 3 weeks later I am in an MRI and getting some weird meds.

There are days when I am like, wow I feel kinda good and maybe I am on my out of this thing. Then I walk down a hallway or shut off a light too fast and it all comes back. Crazy. People do not get it. I look fine, talk fine sometimes, there is no visible sign of my condition. Other people I have met through Facebook call it the Invisible Handicap. I actually had some tell me I intentionally did this to myself so I would not have to work. WOW. If only they knew.

Well signing off for tonight, getting tired and losing attention span, have to keep going back and reading over and over.

Tuesday, January 10, 2012


Hello, my name is Karen-Beth and I am happily married for 9 years and I have a seven year old son. 

I currently have a condition called Post Concussion Syndrome.  It is basically a concussion that does not go away.  I injured myseld in September of 2010.  I also injured my eye, it turns in slightly.   I have have a really nice neuro doctor who helps me the best she can.  I did try for a second opinion from one of the top hospitals in my city and they basically told me my current neuro is doing everything she can for me.  At first I was going a little crazy thinking I am the only person who has this, but I have found a great support system on Facebook.  Knowing other people are going through the same thing I am is comforting and a good outlook for advice and opinions.

I have tried vestibular therapy and different medications.  But the medictions really just treat the symptoms and not that well.  As is suggested by doctors and other PCS sufferes, rest is the best thing for me at this point.  I am told eventually it will go away but no way of telling when.\

So does it suck to have this?  Yes!  I want to do things I used to do and can't.  I am trapped in this body not being able to do much.  I stay in my house mostly, I occasionaly get out for a walk in the mall with my husband or I get out to the doctors.  The walks in the mall or in a store keep me from going insane.

So my biggest regret is that I cannot do things that I used to do with my son.  I am tired of saying "Mommy can't, she doesn't feel well."  I also regret that I have to put the majority of responsibilty on my husband, as supportive as he is I am sure it is trying for him. 

I am not a writer so forgive if things do not make sense or are not grammatically correct.  Hoping maybe this can be a device for another mom suffering from similar issues.  And hoping that maybe it can help me as a tool to keep track of my symptoms, feelings and being able to get things out in a different outlet!

Thanks for reading!