Living With A Concussion

January 8th, 2012, I was in a car accident. The concussion wasn't diagnosed until exactly one month later. Looking back at things I had written, there were clear signs of me having one, but somehow that information was never picked up on by my doctors. I'm figuring that is because of the severity of the pain I was in at the time, so that is all I brought up when I saw them. The events leading up to the concussion diagnosis were pretty dramatic.

I no longer had the rental and we hadn't found a car to buy yet. My Dad, who became a key person in my recovery, let me use his car for the day, after Aaliyah's and my doctor's appointment. Aaliyah had stayed home that day because she had pink eye, so we started the day at the walk in hours at NAP. Headed over to Northampton after that to see my doctor for a scheduled post accident visit. I don't remember much of that meeting, except that I had been really concerned about this area on top of my right foot that had been bruised in the accident and was not getting better. My doctor sent me to Cooley Dickenson for xrays to check for broken bones. I dropped my dad off at work on the way to the hospital.

After leaving Cooley Dickenson, and picking up Aaliyah's prescription, we headed home. There is a short distance on Rt 9  we had to travel before we get to the left turn to go north on Rt 116. As we were waiting for the left turn light to turn green to allow us to turn onto 116, I started feeling a little dizzy. We started moving forward. As I was driving, I quickly became light headed, hot then as I turned onto 116, my arms and hands went numb and then the nausea came. I pulled over, opened my window and blasted the cold air, trying to let this pass. Panicked thoughts started going through my head like, "If I call for an ambulance, my Dad's car will be stuck on 116 and we don't have another car for him to use to get to the hospital. Then it will get towed somewhere and we will have a large fine for that. There's no way I can let that happen. I have to wait for this to pass."

I waited for awhile for this feeling to pass. I remembered in the past having felt similar when I had headaches from Meningitis many years before. I was scared. Aaliyah was scared. We waited at the side of the road until I finally felt like I could slowly drive us home. What normally was a 5-7 minute drive, took about twice as long, just because I was going slow. When I made it to our driveway, I saw my neighbors car at her house. It's not very often that my neighbors are home anymore. I called her immediately and asked her if she could bring me back to Cooley Dickenson. Again, not having the most rationally thought process at the time, I wanted to go to Cooley (knowing the wait would probably be a long one) because that's where all my treatment had been since the accident and I because of the lawsuit, I wanted my treatment in as few places as possible.

When she came down to get us, she told me I looked white as a ghost and not making the most sense when I was speaking. Aaliyah and I had packed up in her car and were off to the ER. My Dad was going to get a ride over from a friend and meet us there. Paul was working out in Pittsfield at the time, in a Government secured building which he could not have his phone on in. We had to wait to get word to him. I was so out of it in the waiting room. they had put me in a wheelchair, because by that point, I was too dizzy every time I stood up and so out of it, I could barely get myself checked in.

We got ourselves comfortable in the very full waiting room, me still in the wheel chair. My neighbor bought me a water bottle out of the vending machine, but she was not able to get it out. (yes, strange things like this is what I remember of that time) She stayed with us until my Dad was able to get there. People were coming and going through the ER fairly quickly. As the day went on, I realized the people who went in quick, had broken bones or were Fast Trac patients.

At one point, I was sitting in my chair and remember feeling like I was going to pass out. I made sure to lean my head against the IV pole attached to my wheel chair. I remember coming to in the nurses check in station when she started taking my blood pressure. I brought up with her that I felt like I had just passed out and she kind of brushed me off. It was a busy day for them. I couldn't believe the things people were saying as they were yelling at the staff about the wait times. Because I was so out of it by this point, I just let everything roll off me and I was in my own little world. My dad came, my neighbor left. I barely remember this. As we were sitting there waiting, I passed out again. This time I said something to my dad, I think asking him to get help. He didn't hear me though. I have no idea how long I was out of it that time. I came to asking what had happened and he had no idea. I think he was paying attention to Aaliyah. I waited 5 1/2 hours to get in to a bed. At some point during in this time, Paul had shown up and my Dad left. I think Paul had gone home to get the other car then came to the hospital. I think he came back with a different kid, or maybe Aaliyah had stayed. I don't remember those details.

Once I was back there, the doctor (again someone else I know) was very attentive and kept apologizing for the wait. It was decided that I needed to have an xray of my neck (because one hadn't been done after the accident) and a CT scan of my brain and neck and they were to give me Dilaudid for the pain. Now, I'm allergic to most narcotics. Dilaudid is one I can handle, but only if given Zofran or another anti nausea medication well beforehand. That didn't happen. I don't remember if it was before they took me to xray or after, must've been before, they gave me the Dilaudid, without the Zofran because that hadn't come from the pharmacy yet. By the time I got back from the tests, I was throwing up everywhere.  it took a couple different anti nausea meds to calm my system back down.

This is when I was diagnosed with a concussion. A month after the accident. They found some compression between the C1-C2 vertebrae which was also causing some of the headaches. He sent me home with some good medications and he told me to call a local Neurologist the next day to set-up an appointment. I got in to see the neurologist pretty quickly after that. I don't remember the first meeting with him much more than him saying he thought I was having seizures. Immediately said I could not drive for at least 6 months because it happened when I was driving, set me up with more tests, more medications to try. He had an MRI of my brain done, EEG, even a test where he stuck needles in my arm and shocked me with small electrical currents. Everything was coming back fairly normal. Because I could no longer drive, my Dad was the one who took me to all of my appointments. I'm not sure how I could've done this without his help. He took a lot of time off of work to help me get to everywhere I needed to go. He also became the driver for my kids, getting them to everything they had. That was a big sacrifice for him.

With the Neurologist, we tried a few different medications over the next couple months. None of which did anything to help the headaches. my physical therapy had switched over from working on my neck and back to vestibular work. Exercises like standing on a foam pad in a corner, holding my thumb out in front of me and moving my head side to side. Standing on the pad and closing my eyes and seeing if I can balance. Standing on the same pad and rocking back and forth or side to side. The problem was that these exercises we making me even more dizzy. I would go home and need to sleep for the next couple of days, just to recover from PT. It got to a point when my physical therapist said we needed to take a break. That what we were doing was not beneficial or therapeutic. We decided to take a break until my symptoms calmed down.

Time went on. I got really good at avoiding triggers that would cause me to get nasty migraines. Loud noises, like fireworks and sadly, my neighbors rooster, busy places like stores, the local pond we spend most Summer days at, my laptop and HDTVs, were all triggers of migraines. I remember one day being at my brother-in-laws house and watching a show on his Plasma TV. All of a sudden things that were staying still, were moving in my vision. Like my son sitting in front of me, was moving on this circular track in my vision. The pain that came with those migraines was unbelievable.

 I suddenly couldn't cook or bake anymore. I remember one day I was totally frustrated and crushed that I could not remember how to make a hot dog for my kids. I could not make dinner at all. I couldn't read a recipe and understand it. I couldn't make foods that I had made hundreds of times before and knew the recipes by heart. So not only was I unable to lift anything over 5 pounds, but then I couldn't do normal routine things as well.  My writing became awful. Even I couldn't read what I wrote.

I would speak sentences and the wrong words would come out and I'd have no idea. like "Brush your face and wash your teeth" That one has become almost comical because more often than not, that is how it comes out now. If I find myself yelling, usually at one of the kids (yes, come on! I'm human and break down on them every so often) the words get all mixed up. Most of the time, the words make no sense at all. Sometimes I say the word of something I can see, even if we're not talking about it. Sometimes, it's words from something else we had been talking about. Sometimes words come out that make absolutely no sense at all!!

I had been journaling everyday after the accident. Once the concussion came into play, I quickly had to stop. Writing not only was messy and illegible, it caused massive migraines. Everything was causing migraines. I actually became good at functioning while having them because I had them ALL THE TIME. Life had to move forward. I had three kids who I still had to take care of.  It was only more pain.
I learned to live with them.

Reading has as similar reaction, although it is getting better now that I have glasses. If I try to read something, by the time I get to the end of the sentence, I forget what was said at the beginning. I failed this test in my vision testing last week. Failed with a big fat 0. Speed was about one third as fast of the normal person. I have also just been diagnosed with Post Traumatic Vision Disorder and will need 6 months to a year of weekly vision therapy.   

A couple months of pain does a real number on you. Then, the isolation was added in. I was really only leaving the house to go to doctor's appointments, which there were plenty of.  My social time was found at swim meets or soccer games. Most of the time, that was physical torture, but spiritually and emotionally strengthening.

Rest. Rest. Rest. That is how to heal the brain. I was not good about always following that because emotionally I was falling apart. I am probably one of the most positive people you will meet. Always looking for the positives in any situation. Always giving the benefit of doubt. Always thinking, it could be worse. Appreciating everything I am fortunate enough to have.

This was trying to break me though. The isolation. The pain. They wanted me broken. I would give in sometimes. I would give in and be miserable for days, hours, minutes at a time. I gave in and let myself feel everything that I have been going through. The loneliness. That was the worst of them all. I stayed connected to people via Facebook. I couldn't hold conversations on the phone. It was too distracting and I would forget what I was saying mid sentence. There would be noises going on around me and they would capture my attention. Even following one-on-one, in person conversations were hard for me to follow and not get sidetracked by something else near me. Oh look, a bee flying by... ADD symptoms I guess. But all new since the accident. These made the isolation feel even worse. I was losing contact with many of my friends. I was home bound unless I was at a doctor's office of kid's sport event.

The plus side of all this, was that it was forcing Paul and I to talk to each other again. We had no choice. We got to know each other as the adults we now are, instead of the 18 year old kids who got together 16 years before. We got to know each other, not as our set roles of provider and mom, but as Paul and Meg. Started talking about our dreams and goals again. We were allowed by circumstances, to become friends again. In all the darkness that had come from the accident, here was this ray of light. It took some time. There was a lot of anger coming from him after the accident. Some awful things were said on both sides. Sometime between February and March things started changing. By his birthday, in mid March, we were friends again. We actually wanted to spend time together. We went out on our first real date, and I'm calling it real because we were there to actually spend time together, to talk to each other, to be with each other.

We went to Monte Carlo. A fundraising event for the High School Athletics. It was visually too much for me, so we kept our focus on small things. Like a card tossing game upstairs where there weren't too many people. We felt connected and like a couple again. We bought $60 of bead necklaces to win an iPad 3. I could see I had the most of everyone there, so I was thinking it was just like buying one for $60. I'd automatically win with that right? HA Nope. It's all about a coin toss. You pick heads or tails and place your hands on your head or you "tail" before the toss.  I was doing ok but I was up there by myself. Paul was talking to other people and watching from a distance. It came down to the last 3-4 people and we all had a lot of necklaces left. So I just kept going and I kept losing my necklaces. Finally it was down to the last 2 people and 2 necklaces. I didn't win. Afterwards, Paul asked why I didn't just copy what the other lady was doing seeing as I had many more necklaces that she had to begin with. This is something that I never thought of. If I had done that, I would've won.

I miss so many common sense things like this ALL THE TIME!! This is not something that would have happened before the accident. Seriously. I have all these moments that are what I've been calling "DUH moments". Things that are common sense but I can not, for the life of me, come up with them on my own. Once I'm told after the fact, it's like "well DUH! Why didn't I think of that?!" It completely makes sense. This happens almost daily still. Most are small things, others are larger and more noticeable by others. My friends are very understanding and even say they don't notice most of the time. I think they're just being nice.

Friends. Wow what a lucky woman I am to have some of the most amazing friends!! I am including my family in with my friends, because you can't chose your family but you can chose your friends. So I'm choosing my family to be my friends as well. My friends give me so much strength and courage. They've helped bring me to doctor appointments, brought me groceries when I couldn't get them myself, visited with me, listened to me vent, gave me advice and different ideas for treatments, kind words, thoughtful prayers, distracted me from my life and told me stories about theirs and just been there for me.

Late last August, I met with a new Neurologist. One who specializes with Post Concussion Syndrome (PCS) and Mild Traumatic Brain Injuries (MTBI), which are the diagnosis's that  I have. We have to drive an hour and a half to Pittsfield to meet with her, but she is worth the drive! She changed up my medications, put me on new ones that help control the headaches, sent me to Speech Therapy with an amazing woman at Cooley Dickenson, sent me for a driving evaluation last October, and sent me to have Neuro-Psych testing done in Springfield (which I still have to do).

All of this is a lot of work. When I say work, I mean work. It's exhausting. It takes a lot of effort to do any of these, then wipes out my energy for the rest of the day, or sometimes even the next couple days. Some days, I wake up and find myself so tired that after the kids go to school, I go back to sleep for most of the day. This happened yesterday. Aaliyah left at 8 and I went back to sleep right away and woke up at 12:20 and I was still tired throughout the rest of the day, but had some things that needed to get done. Some days, I wake up so tired and for the life of me, I can not figure out why. Somethings over stimulate me in the day or two before and my mind just shuts down and forces me to sleep. Other days, I find myself highly productive. I probably over do it those days, then pay for it later. I just go with it when I'm feeling good because there's always so much that needs to get done and never enough time.

Wow! I've said a lot in this post. Each of these segments can be broken down into lots more detail. There is  so much more that I am forgetting to add in as well. Concussions affect so much of a person's life. It really is amazing how different my life is now, than it was 15 months ago. When they talk about pain and suffering because of an accident, it is real! It is no joke! It takes a long time to heal. There are a lot of layers that need to be worked through. There's a lot of trial and error with treatment. What works for one person, may cause more pain for another. It is incredibly important to get a great team of doctors and therapists on your side,  and also working together. Patience is another key part of recovery. You have to give yourself patience, give your kids, family and friends patience. It is a long, very difficult process. Somewhere in the future, i will be back to "normal". I've been told that I should fully recover. Someday. Until then, I will take it one day, one moment at a time and keep looking for the positives in life.