6 years post concussion

Wow! 6 years since that fateful weekend where I hit my head and couldn't get better. I have come a long way to where I am today. On a trip home last week, I was able to get together with a bunch of people from my family without getting sick! It was an incredible milestone that moved me so much, and it was so wonderful to be able to see them all together again! I was able to be back at church and talk to everyone without getting sick! It was amazing! I've missed it so much.

I remember back in the beginning, people would say “After you are better, it will seem like such a short time that you were sick”. Not necessarily true, but I have forgotten how bad it felt some days. I have forgotten some of the frustration of when I couldn't drive for the first 3 years. I have forgotten what it's like to be so embarrassed for my dear friends to come and clean my house because I couldn't. I have forgotten the disappointment I felt in myself when I was a patient to my husband and kids instead of a wife and mother.

Today, I am a different woman. I'm so much better, and on my way to being all the way healed. Six months to a year of continued therapies and I should be all better! A friend put it best when he asked, “Is this the new Kate?!” I'll never be the same as I was before the head injury, but I don't think that's a bad thing. My perspective and priorities have changed in great ways that have centered and grounded me. I'm happier with myself now than I've ever been.

The plan now is to continue with the nutrition changes I've made, keep going for chiropractic adjustments, and keep working on my brain based therapies at Integrated Health Systems: http://integratedhealthdenver.com/ These are the people who have gotten me from 50% to 90% in about a year. I can't tell you what I feel for this place and these people. They have truly saved my life!

I also have to start building endurance and strength. I am so out of shape from not using my body for 6 years. This will be the tough part as it is with anyone who hasn't worked out in a while. Please pray for me specifically in this. I need to get in the pool regularly and get in shape! I want to be able to chase my kids around and participate in life again. My body and mind are ready to do the work now. I just have to put one foot in front of the other and do it.

Thank you for you guys who have supported me and stood by me when I wasn't able to be present. It's been a long road, but I truly believe I'm at the end of it. I would not have been able to get through this without all of you who brought me meals, gave me rides, cleaned my house, watched my kids, listened to me whine about feeling crappy, treated me like I was a normal person while I was sick, supported me through my recovery, prayed for me and my family, were there for my husband and kids to vent about me being sick, and loved us in ways that we could never imagine. You are all incredible!!  

Endocrine and Frontal Lobe

I had my one month check up today from my last reexam. It was a great visit. I saw Dr. Steadman first, who went over how I've been with me and did some adjustments on me. My frontal lobe exercises were challenging for me over the past month, so we've scaled them back and made them more manageable for me. My balance has improved, but it can still be better.

I saw the nutritionist next. She went over my endocrine testing. My cortisol levels are on the low end of normal and my progesterone might be low depending on my cycle. We have to verify that before we know for sure. She's given me a supplement to try to bring up my cortisol levels and we will explore progesterone treatments as we find out more about my levels.

I saw Claire, one of the Brain-based Therapists, next. She went over my exercises and changed up my frontal lobe ones. My balance exercises will stay the same until the next month when I go back.

I'm excited about my progress and the prospect that my progesterone levels are what's causing me to be fatigued every day. If I can get on treatment for that and get more energy, it would improve my life. I'm excited to see if the improvement in my frontal lobe helps with eye fatigue, focus, and mood. Please pray for me to stay on top of my exercises!

4 Months Later

I had another reassessment today and it went really well. The outer parts of my cerebellum are pretty much functioning well. My balance is improved a ton and is almost the same as anyone else through the testing. The mid-line still needs a little work, so I'll continue with the same exercises to strengthen that further.

My frontal lobe area is improved in a lot of ways, but my speed is still lacking. I have a new exercise to work on that for the next few weeks. This should improve some of my speed of thinking, processing, and motivation.

There are some issues with my energy levels still. I am still having fatigue with physical and cognitive activity, so they are testing my adrenal glands and cortisol levels. After the results come back in a month, we will see what the issue is and how to work on it.

In many ways, today was a graduation of sorts. I'm definitely getting better. The lines between the head injury and just who I am are starting to get blurred. I will be going to the office only once a month now for therapy exercises, assessment, and adjustments.

Please pray that I will be able to continue to improve. I hope that my test results reveal something that's easy to address, so I can get some energy back. Please pray that I will stay disciplined with my nutrition and exercises during each month in between going into the office. Thank you so much for all your love and support during my treatment!

Reevaluation

We had my revaluation appointment at the chiropractic neurologist this week. It went well, and I've improved in a lot of areas. I haven't had a major headache in a week and a half, which has been a pretty big relief. I still have a dull headache everyday, but it's nice to not be knocked out by the big ones. My balance and motor function are still improving too.

Phase one was intensive, with 2 appointments every week, a nutrition overhaul, and lots of occupational therapy. I now start phase 2, which includes food reintroduction, appointments every 2 weeks, and more focused occupational therapy at home.

After 8 weeks, we will have another reevaluation to see where I'm at and where we go from there. I'm still very positive about the whole thing and encouraged to have so much improvement.

Please pray for my endurance, patience and motivation. I have to continue to work hard at home with less frequent accountability from the team at the doctor's office. I have to keep myself in check, and make sure I don't overdo activity even if I'm feeling more improvement. Thank you!

An occupational therapist, a nutritionist, and a chiropractic neurologist walk into a bar...

It's been a wild few weeks, getting back into town from our visit to Buffalo and getting life set up here at home. I've been seeing the functional neurologist twice a week. One day a week I see the Occupational Therapist (OT), and one day a week I see the OT, the nutritionist, and the neurologist.

The OT checks my neuro function through different tests and adjusts or changes my exercises as needed. The nutritionist has me on an anti-allergy diet, which is similar to paleo, but more limited. I am off sugar and caffeine, and only eating meats, veggies, and some fruits. I'm on a gut repair drink and various supplements to get my body in good shape for all the other work I'm doing. The neurologist does more neuro exams, chiropractic adjustments as necessary, and oversees my care.

It's a lot of work preparing food all day, taking the right supplements at the right times, and doing all my OT exercises, but I feel confident we are on the right path. There are little changes that I barely notice, but they are there.

Please pray for my endurance during this time. With homeschooling, taking care of the household, and trying to get well it can be a little overwhelming for me. I have an amazing support system and such hope that I will be well at the end of this!

Functional Neurologist Stuff

So... there's some new things on the medical horizon for me here. I saw a new doctor a few weeks ago. He's a functional (or chiropractic) neurologist at a place called Integrated Health Systems named, Dr. Shane Steadman. He trained under the guy who fixed Sidney Crosby's noggin! 

He started with a 2 hour exam and comprehensive bloodwork last week, and we had our meeting today to discuss all the findings and treatment plan. Right where I hit my head is the left/mid cerebellum, which he could tell from his exam is not functioning properly. There are also slight deficiencies in my left cortex (frontal lobe).

The cerebellum controls balance, coordination, motor functions, and some cognitive functions. It also has been tensing up my muscles, because it makes my body think I'm off balance all the time. He's given me some exercises to do with my eyes that are going to help strengthen the communication between my eyes, cerebellum, and body.

The bloodwork revealed some issues with my glucose, iron, vitamin D, and thyroid levels. I am going to start supplements to work on those issues. I've also been given a neurotransmitter protocol to try where I take serotone, dopatone, and gabatone for 2 days each to see if any of those will give me immediate boosts.

He has high expectations for this course of treatment over a 7 week period starting when I get back from my trip to Buffalo. When we asked him what they were, he said that he expected me to have no headaches, nausea, unsteadiness, fatigue, etc. at the end of this. Dan and I are very encouraged and cautiously optimistic. There is a lot of work I have to do over the next few months to keep up with this stuff. Could I please ask you to pray for my attitude, endurance, and faith?

http://www.integratedhealthdenver.com/

Time to try something new

I've been making good progress at the Neuropsychologist. I have really come to a place of calm and peace in dealing with my symptoms. It takes longer and more activity for me to become panicked or anxious about feeling the way I do. I am sleeping better and even dreaming. I am able to put things aside and deal with them later rather than feeling like I need to run away from everything.

It's great to be managing my symptoms well, but at the same time, I still am feeling the symptoms. I still wake up with a headache every day. I still experience nausea, unsteadiness, fogginess, lack of motivation, forgetfulness, and mood and emotional swings. It takes 1-2 hours for those symptoms to get worse and slow me down, which is a lot better than the 30-60 minutes about 6 months ago. I think it's time to try some more stuff.

I put a call into a Chiropractic Neurologist and I'm going to have a consultation there to see if they can do anything for me. I'm open to any other ideas. What have you heard that has worked for others? Any diet changes that have helped anyone with concussion issues?

Staying in the light

I struggled with writing this and coming out with it, but I finally came to the conclusion that I can't hold things back from people if it might help someone who is also going through this. I recently started a new treatment that my neuropsychologist recommended to me over and over again until I gave in and tried it. I started taking marijuana about 2 weeks ago.

It was tough for Dan and I to come to the decision to do this, but we decided on some parameters to make us more comfortable with it. It's legal where we live, so I'm not breaking laws to buy it. I am working on getting a prescription card for it to keep the cost down and to be able to use the medical dispensaries. I will only do it after the kids go to bed, while Dan's home, and if I don't have to drive anywhere. I've only been taking a little bit to give me relaxation and relief, without getting high or stoned.

The results have been fantastic. I would never have imagined that I would find relief in such an odd place. For the first time in almost 5 years, I'm sleeping well and mostly through the night. I even had a couple dreams here and there! Imagine, not dreaming for 5 years and never feeling rested. Either the sleep or the marijuana gives me positive results during the day too. My headache is dulled, my nausea is way reduced. I feel steadier and much more relaxed and rested. I don't have that jittery, restless feeling that I've been plagued with. My brain isn't so overworked and I can focus on the things that I'm trying to focus on.

I've tried all different kinds of medication and any results have been negligible. This is the first time I'm seeing marked results and relief! I'm still doing the neuropsychologist treatments with the brain wave training. It seems to be good to do these two things together. The neuropsychologist thinks it can help my brain see what it is supposed to be like and get used to that feeling.

I know this is weird, different... whatever you want to call it. I'm trying to treat it as a medication and take it one day at a time. I'm continually discussing it with Dan and another accountability partner to make sure I'm not abusing it. The kids know I'm taking a new medication that I have to take at night, before bed, when their Dad is around. I'm keeping track of the amounts, times, and results in an app I've found.

Please consider before you judge that I'm not the kind of person who would decide this lightly or jump into doing this without struggling with it. It's great to finally have something that is helping. We'll just see where it takes us. Please pray, not only for the effectiveness of this, but for strength for Dan and I. It is difficult for us to be bringing this into our family. We are praying to keep the positives outweighing the negatives. It's better to keep things like this out and in the light, rather than hidden away in the darkness.

  

Z-Score

We are switching things up at the Neuropsychologist. The last few treatments I've had have all been z-score training without LENS. He thinks that the LENS would have done it's magic for me by now if it was going to work. The z-score training is more like physical therapy for my brain.

It trains the brain using visual and auditory positive reinforcement. When my brain is doing what it's supposed to do, it receives reward. He can see my brainwaves at each electrode site while the z-score is happening. It's good for him to see my progress, and he's able to adjust the difficulty levels when appropriate.

This won't give me immediate results, but will be more like rehabilitating a limb. Over time my brain is supposed to get stronger and learn how to communicate more effectively within itself and to the other areas of my body.

I'm still hopeful that this can give me some positive improvement. It's more work and a longer road, but I believe that God can work through anything.  

Ugh!

Today was a day of discouragement. I woke up feeling so down and frustrated. It has been 10 treatments and I haven't seen any lasting improvement. I started to question and doubt everything we've been doing. I wondered if this guy knows what he's doing at all!

It's hard to have hope in something and then be waiting for the results to come through. We want things to be instant or at least to have a hint at what the future will bring. It's hard to hang on and trust that the Lord will bring us through the other side of something. I know He is with me and I'm going through this particular treatment for a reason and I just have to hold tight to that.

It's a crappy, feel sorry for myself kind of day. I have these every once in a while and I think it's ok to have them. I'll feel better tomorrow and be back to my positive self again.  

9th LENS treatment + z-score

I've had 9 LENS treatments so far and we have introduced z-score training the last 2 visits. He does the LENS first to wake up my brain and get it relaxed, and then does z-score training.

He hooks up the electrodes to my head and to the computer. With my eyes open I have to try to move a blimp across the screen in front of me. When my brain produces the waves it's supposed to in the right amounts, it moves the blimp forward. If my brain doesn't do what it's supposed to do, the blimp doesn't move.

The other part of z-score is with my eyes closed. Each site creates musical notes and plays the note when my brain does what it's supposed to do. It plays a melody when it's working well and is choppy when it's not doing what it is supposed to do. It's positive reinforcement for my brain.

He has seen improvement in my brain waves during the z-score training that can just get better over time. It may take more time to build retention so the results can last.  

6 LENS treatments

I've had 6 LENS treatments so far and I go for my 7^th today. This has been a lot of trial and error. I've had some physical relaxation in my eyes, shoulders, and jaw at times, but I also had increased restlessness and trouble sleeping. There has sometimes been a new headache on top of the old one that I still have after treatment. I haven't had any increase in clarity or cognition.

It's tricky, because my Alpha waves (rest, relaxation, calm, sleep) are very low; while my Beta waves (active concentration) are very high. My brain fights hard to be actively concentrating which wears it out quickly, but it doesn't produce enough brainwaves to relax or sleep well.

I'm trying to stay encouraged and not give up. The doctor has tried different things every time and has more things he can try. I think it's just about getting it right and then building on that, but not pushing it too hard and too fast.

Please continue to pray, mostly for my emotional well being. It's been a long time since I've allowed myself to visualize hope and it's scary to not be seeing results yet.

Jeremiah 29:11For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

LENS #4

I had my 4th LENS treatment today. I have another one tomorrow. 

The benefits so far: a relaxed feeling in my shoulders, eyes, and jaw; and less sensitivity to chaos. The benefits have lasted up to a day and a half so far, and we are hoping to build on that and increase the retention. The first day they only lasted a few hours and have lasted a little longer each day.

I still have headaches and most of my other symptoms, but hopefully the more treatments I do, the more my brain will respond. Maybe the relaxation will help me sleep better and have less pain. It's possible it will lead to less headaches and my body can start to recover. 


I'm cautiously optimistic ;-)

1st LENS Treatment

I had my first LENS treatment today. I didn't have any expectations going into it. The doctor put the lead on each site that he mapped last week and gave it a short electromagnetic charge. Each site he asked if I noticed any change. I felt relaxation in my shoulders after the 4^th site, and an overall relaxation in my body. The headache I had come in with did not go away and I didn't notice any other significant changes.

I have a different headache than I normally do now (2 hours later), but the relaxation in my shoulders is still present. All the sites are not normally done, so we probably just overdid it. He thinks that my sleep and my resting periods are when I could notice more of a difference. I go back for my second treatment on Friday morning.  

If you want to read more about LENS: http://www.neuropaths.com/index_files/LENS.htm

Brain Mapping

I went for my first appointment with the Neuropsych guy and had my brain mapped. He recorded 5 minutes of data with my eyes open and 5 minutes with my eyes closed. He will analyze the data and compare it with healthy brain maps.

I go back on Tuesday for the report and for my first treatment. He will send signals back to the points in my brain to try and “reboot” the signals that are firing incorrectly. The expectation is that I will be able to feel relief from pain, fogginess, fatigue, over-stimulation, nausea, and some of the other symptoms I feel within an hour or two after the treatment!

Lasting results will need to be built up over time. The improvement will only last for an hour or so the first treatment. I will have to go back 2-3 times a week in the beginning, but should be able to taper off gradually as my brain learns to retain the correct signals. The hope is that I will have permanent lasting results after 20-40 treatments.

Some connections will never be able to fix themselves, but the doctor is confident that I will see some improvement. I'm hopeful and excited that a doctor has finally understood my symptoms and has a treatment that can help!

I humbly ask you to pray with us as we go through this. I haven't felt good in almost 5 years, and have gotten used to feeling this way. I'm nervous that the good will make the bad difficult to bear. I'm nervous that I won't see a lot of improvement. I'm nervous about the length of the treatment time and the roller-coaster of ups and downs that I have to look forward to. I'm trying to focus on the positive and could really use you all in my corner.

Thanks!!!  

Philippians 4:13 I can do everything through him who gives me strength.

Back in the game

It's been a while since I've written anything. I think it's hard to keep saying there hasn't been any change. It's been over a year since my surgery. It is time to get back in the game.

I saw a Doctor of Osteopathy (DO) last week and explained my whole sad story. I'm not sure how to gauge her reaction. She said she would look into some things and see what she could figure out as far as treatments go. It didn't seem like she saw me moving past my current state. Maybe she was really interested, maybe she was trying to placate me. We'll see.

I got a comment from Kathy on a post that gave me a direction to follow:

"My daughter suffered from PCS for several years with zero help from any of the 13 doctors she saw. We finally found an effective treatment program called LENS, which is explained at http://www.virginianeurofeedback.com/lens.php My daughter's story is at http://mindahaas.net/2013/03/one-concussion-too-many-my-post-concussion-story/ The LENS treatments gave her life back to her. Have you looked into LENS? You can find nearby practitioners at wwwochslabs.com"

I've looked into it and I think I'm going to check it out. Has anyone else tried LENS? I'm wondering if there is total improvement from the treatment. I am way better than I was in the beginning, but I would really like to break through where I am stuck at now.

My current symptoms are:

everyday headache

migraine (1-2/per week)

fatigue

muscle pain/weakness

nausea/vomiting

poor/restless sleep

hazy/foggy feeling

over-stimulation of senses

James 1:5-8 MSG If you don’t know what you’re doing, pray to the Father. He loves to help. You’ll get his help, and won’t be condescended to when you ask for it. Ask boldly, believingly, without a second thought. People who “worry their prayers” are like wind-whipped waves. Don’t think you’re going to get anything from the Master that way, adrift at sea, keeping all your options open.  

Faith and healing

I think that faith has been a huge part of my recovery. It would be so easy to give up and just decide that this is the way I'll be for the rest of my life. I believe the unique position I've been put in gives me unique knowledge to a people group who are suffering from some ailment in their lives. It's hard to go through anything, but we all go through something in our lives. It could be loss and grief, a long time illness, economic issues, etc.

My love for the Lord and my desire to bring Him glory has kept me strong through my 4 years of this brain injury. I fail all the time, but if I can remember to try to live different moments of my life as Jesus would if he were here in my shoes, I can bring glory to God.

Please use this space to discuss how your journey has been affected by God, good or bad. If you have questions about my faith or how to learn more about having a relationship with the Lord, please don't hesitate to ask.

"Now faith is confidence in what we hope for and assurance about what we do not see." Hebrews 11:1 

4 year anniversary update

It's always been tough when my head injury anniversary has come up. In 2 weeks, I'll be “celebrating” 4 years since I hit my head and my life changed. For the first time, I'm encouraged and feeling like I'm truly making progress. I have improved a lot since my surgery and have been slowly building my endurance over the past 7 months.

I still struggle with headaches every day, but they aren't as bad as they used to be. My nausea and balance issues are not as bad as they were either. I only have 3-4 bad headaches every month, compared to almost triple that a year ago. My neck pain seems to be getting better too, as long as I don't over-do it. I keep up with my stretches every day, and I work on endurance when I can.

My husband and I have moved out of our house, so that we can finish renovating it and get it ready to sell. Over the past year, we have been feeling a pull towards moving to Denver and we are readying our lives to make that happen.

God has been so faithful to us. It's been a year of improvement and strengthening of our family. Both my kids made the decision to be baptized this year! We have felt the Lord's guidance and clarity in the decision and details of our move. We are excited to follow God's plan for us, but it will be so hard for us to leave such an amazing support system of all our friends and family. The kids are on board and even excited at times, but also sad to leave behind all they know.

"The old Kate"

Loss and grief are a normal part of life. Death is a part of life. We are able to process that someone or something is gone and over. We have funerals, wakes, church services, well wishers. There is a “grieving period” and then we move on. We remember the lost and try to move forward.

So how do you grieve what is not dead?

We who have been through PCS have lost our “old” selves. There is a period of waiting and uncertainty where we wonder if that person is ever coming back. We try to do what we used to do, be the people we used to be. We fail, get frustrated, and are stuck in a strange place.

How do you move forward, but not leave your old self behind?

Four years ago, I was a different person. I was stopped in my striving tracks by a fall that I don't even remember. Weeks, Months, Years went by with me and all my loved ones waiting for the “old Kate” to reappear. I struggled through the stages of grief, but couldn't move through them. I was still there and I couldn't let go. I couldn't get to a place of acceptance.

I listened to friend almost exactly a year ago tell me that I might not ever get better. She told me about a relative that just has to live with what she has. I didn't know that this would be the turning point in my life and the first step toward acceptance. 

Sometimes, I pretended that I didn't have a head injury or said I was fine. I got angry at God, doctors, friends, and family. I made little promises to myself and to God, “if I could be better I could do this....” I was engulfed in deep sadness at times, and lost myself for days. I tried every drug and type of therapy that I could find to try and get better. I saw countless doctors and was solely focused on my condition. I had surgery to replace a disc in my neck, and started my recovery from that.

I think it's getting better, maybe easier to accept who I have become through this. I am still going through stumbles and struggles, but I no longer feel weighed down by the discouragement and disappointment of loss. I know that I will never be the girl I once was, and in a weird way, I'm ok with that.

“... you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.” James 1:3-4

Pure Joy

“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.” James 1:12

Over the past month, the book of James has been working in me. It's made me look at myself and ask questions that I haven't asked before. It's made me examine myself and wonder who I am and who I have become.

Does my head injury define me? Have I become that person who can't seem to talk about anything else? Why am I so concerned with how people view me? Why do I have to make sure they understand exactly what I'm going through all the time?

I have many reasons to be happy. Over the last 3+ years, God has blessed me in huge ways over and over again. I have come to a place of self-love and self-confidence. My husband and I have never been closer. My children are growing strong and independent. We have beaten almost all of the debt we got ourselves into and are closer to financial freedom than I could ever have imagined. We are on a solid and steady plan to finish remodeling our house.

There are so many stories of God's rich blessings over these years since the head injury. So many specific instances of His intervention and perfect timing that there is no denying His work.

So, why do I worry when I have a smile on my face? Why am I nervous to be happy? I don't want people to think I'm pretending, lying, or that I'm all better.

My physical challenges are invisible to most people. Some who know me really well can tell when I'm feeling worse than usual, but my headaches and fatigue aren't displayed for all to see.

Everyone has trials in their lives whether they are big or little, temporary or permanent. My trial shouldn't be any different than anyone else. It shouldn't define my life. When people look at me, I don't want them to see my pain, I want them to see God's light.

James is brash and bold and can make you uncomfortable, but his book is the truth. I have to remember that the testing of my faith brings perseverance. I have to let it finish so that I will be complete, not lacking in anything. I must ask God for wisdom in all things and then believe and not doubt. I must take pride in my position and stand the test so that I may receive the crown of life. 

This is me as a little girl. Hopefully I can be

as strong now as I thought I was then!