Thursday, November 19, 2015

My Neurological Disorder

I'm not even sure where to begin. Friday morning I was feeling pretty rough. My blood pressure dipped, I was dizzy, and I just felt miserable. I contacted my neurologist in hopes of a temporary fix to get me through. I had several specialists I was waiting to see and I just needed some relief in between the waiting. I was surprised when he told me that he was admitting me to the hospital instead.

I panicked. I didn't have time to go to the hospital. I had Caleb's 6th birthday party that night and his last playoff game was on Saturday. This just wasn't going to work. Clearly I wasn't thinking because my parents and Ryan told me I was going to the hospital. I literally dumped all of Caleb's birthday stuff on my mom and aunt, my dad was out of town, and Ryan had to unload boats from trailers. This was the worst possible timing. My mother in law drove me to the hospital and I was taken back quickly. 


I had so many nurses and doctors ask me how long I'd had my symptoms and I admitted that it had been going on since February. They all looked at me like I was crazy. I explained so many times that I was originally misdiagnosed. You can read about that {HERE}. I had so many people tell me I was way too young to be there. I totally agreed. But being admitted forced all of the specialists that I was waiting months for to come to me.

It took hours for me to actually get into a hospital room. As soon as I did, one of my Zumba® girls showed up with food. I couldn't believe she came all the way down there just for me, but it was awesome. My whole family was taking care of Caleb and celebrating his birthday, but Kris made sure I wasn't alone that night. Ryan couldn't make it down there that night because Caleb had a football game the next day.

The first night I had 17 tubes of blood drawn and a CT scan done. I had a steady stream of specialists coming in and we all went through my symptoms over and over. It was exhausting. At some point I had an MRI of my spine. I can't really remember and everything runs all together now.


Saturday was our last playoff game of the year and it was so tough. We went scoreless into overtime and barely won. Ryan was able to show me the last play of the game and I hollered in the hospital room when our boys won! We're going to the Super Bowl on Saturday.

I was put on a stroke patient diet while I was there. It. Was. Awful.

While I was stuck in a hospital bed, my husband decides to buy our little boy a four wheeler. Yeah. He did.


As they ran more tests, some of my restrictions were lifted. Food, glorious food! I scarfed it down!

On Saturday night Ryan was able to come stay with me. I was finally able to sleep! Having your person just makes all of the difference. The toughest part was knowing I only got a few hours with him. Ryan had to leave on a work trip two hours away. It had been planned for a while and we couldn't reschedule it. I was faced with potentially getting a difficult health diagnosis and not having my husband by my side. I cried when he left.


It was also tough seeing my little one. All I wanted to do was be at home with him and when he walked out I just bawled.


On Sunday a team of neurologists came to my room and did an examination. The main doctor began asking me all kinds of questions about my symptoms, but then he started asking things that no one else has ever asked before. He explained that I have genetic neurological migraines. At first I didn't believe him. I thought you had to have excruciating headaches to have migraines, but migraines are so much more than just a headache. They are a neurological disease with so many symptoms and you can actually have migraines without a headache. Every single symptom matches. I was stunned. It was the last thing I expected. I will have to take medication daily to prevent them and try to find my triggers now. I have done a lot of reading since Sunday and it's just really overwhelming at this point. I'm sorting through it though.

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I was discharged Sunday evening and my dad came to get me! I was so tired and ready to get home.

Seeing this kid made my day. My mama sent dinner and we went home by ourselves for the first time at our new house. Luckily we have the best neighbors in the world so I called to give them a heads up that we were without Ryan.

Caleb has been by my side non-stop. He's taken the role of "Man of the House" very seriously. He snores and talks in his sleep, but he sure is cute!

We went to Zumba® on Monday and football on Tuesday. I was just so ready for life to feel normal. I started my medicine on Sunday night but I didn't expect to see anything yet. This will be something I have to work up to over the next four weeks.



But....

On Wednesday I felt a difference. Some of the nausea and brain fog broke long enough for me to feel normal again. It didn't last but it has left me with so much hope. I think I may be able to figure out how to use the medication and manage my triggers to control my symptoms better. I think I can get it under control.


I have a lot of emotions right now. I've had to depend on so many people, but I haven't had the one person I depend on the most. Ryan comes home on Thursday and we can begin figuring out how to tackle everything now. My neurologist wants me to still have an EMG and my gut reaction is fear. I am afraid he's looking for a secondary issue or maybe I've been misdiagnosed again. I have so much fear. I am overwhelmed by the friendships I have. Kris, Lori, Wanda, Allie, Gracie, Pam, and Charles made sure that I wasn't alone. Friends texted me so many times to check on me. Football mamas sent videos of the game. My Aunt Connie actually worked on the floor I was on and watched over me. Seeing all of them was so comforting when I was missing my family so bad. I am struggling for control. I want my life in order. I want things back in place and putting it all together is tough right now. I forget things. I don't have the energy to do all I think I can do in a day. My OCD is running wild when I cannot. I have high expectations and I realize I need to cut myself some slack, but I am not wired that way. 

Realizing that this isn't just something simple and something that isn't just going to go away is tough to process right now. I can't just take Tylenol and make it go away. I have a wave of symptoms that I realize will be a part of me now. I'm so much more than just a bad headache. I guess a part of me was still hoping that someone could make it all go away. 

7 comments:

  1. So glad you got answers! Migraines are awful. I was diagnosed with chronic migraines (and visual migraines) as a teen and now my 4 year old has been seeing a neurologist for the same the past year. Hope the meds help you and you're on the mend!

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  2. At least you know, and there is treatment. It's terrible without either of those. I know you will persevere, you have already gone through so much, I hope you are seeing the light at the end of the tunnel now. My thoughts and prayers are with you.

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  3. Interesting story. Sorry for you uncomfortable pain and suffering. This realy is similar to what has been going on with my wife. She suffers from frequent migraines that are so severe at times she has to take medicine and have little light and noise. I feel for you. Hope things get tolerable and you can resume your regular activities. Just know your not alone with what's going on. If you ever want to link up with Erin and talk remedies or experience you should. Take care and be well!

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  4. It's nice to see that you are smiling in every selfie!

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  5. Try to stay positive Wendy! I'll continue to keep you in my prayers. Hugs!

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  6. So sorry about all you've been going through. Hoping this medicine works for you and you feel better soon! Love your honesty and positive attitude, even when it's hard. Prayers for you!

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  7. I am glad you have some answers Wendy.

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