Fresh Perspective

It's been a big month. Mid-April, we took the kids to Disney World on a surprise vacation. I was very nervous preparing for the trip. I wasn't sure what flying was going to be like for me and how I was going to manage the long days with lots of walking. I'm happy to say I'm still alive and I was even able to have a good time!

The pressure changes on takeoff and landing were painful. It reminded me of how weather can affect headaches, but on a quicker and sharper scale. I was wiped from a lack of sleep and the long days, but it was so rewarding to have that family time. The kids loved every minute of it and it was awesome to enjoy it with them.

After we got back, we had some other stuff going on and I just haven't felt like I've caught up yet. I'm still wiped out and having some pretty strong headaches every day. I hope I can get a few days of rest strung together so I can recover soon!

I saw a new neurologist this week. It's been almost 3 years since my initial concussion and we felt like it was time for a fresh perspective. His name is Dr. Meyer and he works at the Brain and Spine center. He went over all my history, ordered a brain MRA (like an MRI – looks at the blood vessels in the brain also), and some blood tests. I see him again next week to go over all the results.

It was pretty overwhelming to gather and examine everything from the past 3 years. I looked at every test I've had done, every medication I took, every symptom I felt. I have definitely come a long way. I'm so grateful for the support I've had in my life. There were lots of times where I could have given up, but there were always people there to encourage me and keep my fight alive.

Thanks! Please continue to pray for me and my family. God has been glorified so many times through this. Even though I've had to go through this, I know He's been holding me the whole time.  

We all have our own thing

It's hard for me to hear people say things like “It's not as bad as what you are going through, but...” and then proceed to complain about something that is going on in their life. It's hard for me to hear this, because I truly believe it's all relative. We all have our own thing.

A good friend inspired me to be honest: I get angry, frustrated, jealous, sad... so terribly sad. I feel sorry for myself. I wallow. When someone feels better after being sick or injured, I ask, “Why not me, when is my turn?” I am petulant and impatient. I take on too much and then fail miserably.

I am so scared that I might be this way forever. This might be my thing for the rest of my life. I might hit the end of my life and not ever get to feel well again. I have forgotten what it is like to feel good.

The emotions I have experienced while being disabled have ranged from low lows to high highs. I get really discouraged, but I also feel tremendous joy. Sometimes I feel like I'm in a waiting room, ready to hear my name called.

I have watched people get hurt or sick only to be fully healed and whole in a matter of days, weeks, or months. To those people who have been hurt or sick, a week might feel like forever. For me, it seems like the blink of an eye. I've been disabled with this head injury for 2 years, 9 months, and 15 days. For me, it has seemed like forever, but for someone who has been living with a sickness or disability for longer, my struggle is a fleeting moment.

There are people with all ranges of TBI. For me, I can function pretty well. My only limitation is how much pain I can handle. The more I do, the more I hurt. My thinking and processing is slower than it used to be, but I was relatively high functioning before the head injury. Some of my processes feel like they have never even been affected. I can handle physical activity in small doses, social activity in small doses, I can read and write, I can remember pretty well as long as I'm not too overextended. I have limits, but I'm not stopped in my tracks.

I'm so blessed with a support system that loves me and tries their best to help me through this. My husband and children have stuck by me through every moment and fought this with me. I'm loved by the King of Kings, my God, who has never let me go or let me fall too deeply into despair.

I'm a fighter, I will not give up trying new treatments or seeing new doctors until all avenues have been explored, I die, or I am healed and whole. The Spirit inside me will not let up or give up.

Bad Gluten

After the sleep study came back normal, I moved on to the next thing to try on my list. I tried to go without gluten for a month. I noticed that I had more energy and less nausea while I was off the gluten, but I wasn't sure until I tested it this past week. I tried to eat food with gluten in it on Tuesday, and the results were pretty telling. I was heavily fatigued and felt like my brain was foggy and I couldn't think.

I'm still feeling some of the effects from this one trial of gluten (four days later) and I'm not going to eat it anymore. After my initial hissy-fit over not being able to have bread and beer anymore (oh and soft pretzles, mmmmmm...), I'm able to see that it's not so bad and it is actually a good thing. Knowing is half the battle! I have no desire to eat things that make me feel so horrible. I have lots of recipes for gluten free menus and am doing really well with not missing it.

I still am working on the migraine/headache part of all this. My doctors office told me that the Botox claim was rejected, but they never even submitted it. Now we are waiting to see if there is approval for it. My insurance company says they will cover it with a letter from the doctor and we're hopeful it's approved and it helps take care of the migraines.

I think we are slowly putting humpty back together again. It's amazing that God made these intricate bodies that can be changed so entirely, but that as the maker, He can heal. So many different processes of mine have been affected by the concussion, and we are working on addressing each of those.

Non-Sleep Study

I had a sleep study Monday night (they should call it a no-sleep study). It was so terrible. I felt like I didn't sleep at all, I was dreaming about not sleeping, and I couldn't tell if I was asleep or awake most of the time. At 5:30am when they woke me up to send me home, I felt awful and then they told me there was no apnea during the night.

So, no apnea is good because I don't have to wear a CPAP or any other breathing device while I sleep. I did have my hopes up that this would explain why I wake up feeling so crappy every morning, though. That's out, I guess. I'm still waking up all the time at night and don't feel rested when I wake up in the morning.

My neurologist is submitting a narrative to my insurance to try and get me approved for Botox treatments to prevent migraines. It was recently approved by the FDA for this use and has shown some good success. Because I've tried everything else to prevent migraines, this might actually get approved. I'm still getting 1-2 migraines every week.

I've had a rough month. I've been really down and discouraged for most of it and feeling physically awful. I have moments where I'm encouraged and am finding faith in my down times, but it was bad. This past couple of days have been better. A good friend reminded me of a verse: “Give thanks in all circumstances; for this is God's will for you in Christ Jesus” - 1 Thessalonians 5:18. She reminded me that these “speed bumps” make you slow down and look at why God has you where He does.

Please pray that I will continue to see Christ in my struggle and feel Him with me through every step. I know He's there, I just need to make sure I'm meeting Him. Please pray that I will be able to sleep soundly through the night and feel rested when I wake up in the morning. Please pray about the Botox treatments.