Hi friends! I am so excited to finally share an update with you!
In case you've missed it here are some previous posts I've written about Epilepsy and my journey with JME (Juvenile Myoclonic Epilepsy) :
https://bayleykatherine.blogspot.com/2018/07/a-new-perspective.html (most recent)
https://bayleykatherine.blogspot.com/2018/07/update-update-update.html (last update)
https://bayleykatherine.blogspot.com/2017/11/hello-epilepsy.html
https://bayleykatherine.blogspot.com/2016/11/disability-or-reability-my-epilepsy.html
https://bayleykatherine.blogspot.com/2016/09/my-hallelujah-song.html
https://bayleykatherine.blogspot.com/2015/06/silent-pain.html
From the start of our journey to a diagnosis to where we are today...
My First Doctor's Appointment:
The doctor's appointment went nothing like we expected! It was so hard and not what we hoped for! It was definitely broken and it wrecked me!
We got up and we got to the appointment on time-- woot woot! (I thought that we might just have to cancel at the last minute because I just honestly didn't know if I could get out of bed, but by the grace of God, we made it! Praise the Lord!) It was a weird feeling, going into this appointment with hope and fear all at once. Wanting this appointment and at the same time, so not wanting to go through this and really face these issues. We desperately need answers for all that has been going on with my health. Honestly, though, the only thing I'm sure of is Jesus. It's been a fight, but I can honestly say that I am sure of Jesus. He is good and He has it all.
We got in the office and everything went haywire! It was hard and when the doctor left the room I kind of blew up (in a quiet and confused way) to my mom, who by God's grace, was with me. I almost cried and she almost cried and we were both a mess. We left and I not-so-quietly blew up to the rest of the fam. I freaked out, was angry, and cried on the way to McDonald's. I then proceeded to cry AT MCDONALD'S! Y'all! Seriously in the booth at McDonald's crying! It was that hard! We didn't get answers like we had hoped, but instead more questions. I had to make decisions about what to do next as I was presented with tests she wanted to run and treatment she wanted to start that I wasn't at all sure about! I lost my marbles trying to figure out what to do! I could refuse and risk not getting answers or I could go ahead and risk further potential damage and seizures and all sorts of other things that I just couldn't bear the thought of. I got advice from Mom and Dad, hugs all around, prayers from people everywhere, and Jesus always! Praise the Lord!
Wrestling with the Lord and Coping After that Appointment:
After the appointment and for days after I was on a struggle bus like I had never been on before! I was handling it all worse than I could have imagined and it broke me in ways I can't even describe. I was angry at God and at the world. I didn't think I was mad at God, but I was. I was mad that nothing made sense and I felt so lost. I was mad because my life was a mess and how in the world can I live like this anymore?? How was this supposed to work? What am I supposed to do?! I just didn't want to deal anymore! I was questioning myself, questioning God's goodness and if He was truly in all things. I was wrestling in ways I never have before! The Lord brought me to repentance and showed me the way I should go and I am just in awe!! He is so kind and merciful!! So, so good to us! He is teaching me and I'm still struggling, but He knows my brokenness and is bringing beauty from these dark ashes!!
I'm learning again how to hold joy and sorrow in the same hand. ♥️
The First Test (August 8th):
The first test was blood work and it went so well!! I was so nervous because the last time I had blood work done I felt a little dizzy and that was six years ago when they were first trying to diagnose me and I was so much healthier back then. We were nervous, but it went way better than expected and the Lord answered prayers in mighty ways! We got the results back a few days later and everything came back within normal range. It was weird feeling what we felt...what we feel. Happy because those things were ruled out, but also grieving the fact that we still didn't have answers and we were going to have to proceed with additional tests, the next harder than the one before.
The Second Test (August 17th):
The second test was an EEG. It was scary walking into it because I've had two before and they went so good, no problems, but again, I was healthier then. We had no idea how it would go and exactly what would happen. We prayed so much and so many of you were praying with us and we so appreciate you!!! Thank you for praying with us & for us!!! ♥️ We got to the doctor's office and it was just Mom, the girls and I. It was early in the morning and super early for my epileptic self to be out of the house, much less going to take a risky test! She called me back and said Mom couldn't come with me so I was by myself this time. As we were walking back I was asking her what was going to happen, hoping it wouldn't be the same tests this time around, but she said it was and I was calm and adulty for about two minutes before I freaked out on her and cried. If you have never had an EEG, let me explain: From my experience, after she preps my head and marks it off, she attaches wires to my head and ears (weird right?), sits down, gets the computer ready and does three things. One: I have to close my eyes (big seizure trigger for me), two: turns on flashing lights (huge trigger!) and I have to sit under them, and three: I have to basically hyperventilate for two whole minutes. No easy feat and JESUS BROUGHT ME THROUGH IT!! So graciously!!
As an adult (God worked this out so perfectly!) I can refuse treatment or any procedure, etc. that I don't feel comfortable with so I did. I don't take this responsibility lightly. I could have walked away in the very beginning, but I felt the Lord pressing it on my heart to stay, I didn't have a peace from Him to walk away so with Him as my strength, I stayed. When she asked me if I wanted to refuse the lights, I felt a peace about saying yes. We had worked it out for me to not close my eyes-- Praise the Lord! I am so grateful for His provision and protection! The triggers left were sitting still and the breathing/hyperventilating for two (three?) minutes and GOD SAW ME THROUGH! He is the ONLY strength in me! Sometimes His strength doesn't look like what we prayed for, what we wanted or imagined or what we thought it would. Sometimes it actually looks really different and we can't see how it could be Him strengthening because it looks like weakness, but He is strengthening us! It just looks different! Just because His strength doesn't look the way we hoped doesn't mean He is any less strong or that He isn't listening or that He doesn't care- I promise He does! It just looks different! Just because it looks different doesn't mean He is any less good- He is *so* good! Just because it looks different doesn't mean it's not beautiful. It's just different. I made it and walked out with a smile because Jesus is my strength and He is so faithful and gracious! I am so grateful!
The Third Test (September 7th):
The third test was an MRI. This was by far the scariest test for me! Everything about this has seizure written all over it! It was terrifying! Making this decision seriously so, so hard! Lots of back and forth and running, trying to talked myself into and out of doing it. Trying to convince myself and my parents that I didn't really need it or we could find another way. Running. I was running. Terrified. So scared. One night when Mom nd I were up so stinking late she was talking with me and the Lord showed me so sin in my heart and showed me exactly what I needed to do-- the MRI. I had to do it. He was never any less God or any less sovereign and He graciously showed me that no matter what His will was, no matter what happened, it was for my good and His glory. I was so scared, but at peace, too. I know God is on His throne and His will is good. There were so may people praying for me, so much encouragement, so much inspiration from brave people, from people that love and seek Jesus and the Lord kept bringing them to mind. Thank You, Lord! Oh, the grace of God! The mercy! Thank You, Lord God Almighty!
A man came out and called my name and when my Dad saw him... I don't know how to really explain... Jesus gives in great abundance! Oh, He does! My dad knew him and they were friends! It gave us such peace and knowing that a friend of my daddy's was going to be taking care of me... a precious gift...for all of us. I almost cried and just wow God! He was funny and compassionate. He listened and made me feel safe. He's bald like my daddy. He was exactly what I needed. God knew that. He knows what I need and graciously gives in great abundance.
I laid down and was so scared. Writing this is hard. It's bringing back a lot of hurt and that feeling of fear and panic, but Jesus. Here we go...after we got at set up and started I began to panic and feel "seizure ish" so I yelled for Mom and she couldn't hear me at first because y'all! That thing is so loud! And she has earplugs (because it's sooo loud!) so I got louder, she got up, he asked me if I was okay and after a bit we began again. We had to start all over. Mom stood right next to me the rest of the time and held my hand. I cried almost the whole time I was in that tube. Cried out of utter gratefulness because God is so gracious. He gives good gifts. He gave me Mrs. Jayne. Mom had been at her house and they were talking about the MRI and she asked Mom what time it was and told Mom she'd be on her knees. Every time I imagined Mrs. Jayne on her knees praying for me, I cried. Grateful. Blessed. Jesus. Grace. Praise. God gave me lots of things to be grateful for and thing to think about and remember. He gave me this precious family and a wonderful community, people that love me and I get the privilege of loving. Proverbs 3:5-6 "Trust in the Lord with all your heart, And lean not on your own understanding; In all your ways acknowledge Him, And He shall direct your paths." He gave me that verse.
As I'm remembering being in that tube with these things going through my mind and tears streaming down my face, holding Mom's hand, my heart hurts, but mostly, mostly Jesus. Gratitude and awe.
Halfway through they came in to add contrast (needle + dye + arm = contrast to my brain:)). I came out and I had already told him that the contrast had to go in my left arm so He prepped me and as he did he saw my tattoo that says "there will be a day" and talked with me about it for a second although he did most of the talking and I cried remembering that indeed "there will be a day" (Revelation 21:4-5). I thought about how awesome it is that God worked this out so that every time I get a shot or blood drawn, people see truth and I get to talk to them about Jesus or Jesus does what He did here, I could barely talk and still he saw it. God uses it. Even if it's just me being blessed or reminded of truth, He is using it. I asked how much longer and he gave me some happy news that it was only a little bit longer! Yay! When it was done they took care of me and were so gentle and compassionate! There was a nice man helping him, as well and I am just so grateful for them both!
I felt like crying as we walked down the hallway to the waiting room and when I saw my people sitting there looking at me, I just burst. G berry gave me a sweet hug and held me while I stood there crying. We debriefed and walked to the car and off we went to get a smoothie. I was weak and in pain and grateful.
Thank you sooo much for reading!! Part two is coming at ya tomorrow, Lord-willing!
-b
In case you've missed it here are some previous posts I've written about Epilepsy and my journey with JME (Juvenile Myoclonic Epilepsy) :
https://bayleykatherine.blogspot.com/2018/07/a-new-perspective.html (most recent)
https://bayleykatherine.blogspot.com/2018/07/update-update-update.html (last update)
https://bayleykatherine.blogspot.com/2017/11/hello-epilepsy.html
https://bayleykatherine.blogspot.com/2016/11/disability-or-reability-my-epilepsy.html
https://bayleykatherine.blogspot.com/2016/09/my-hallelujah-song.html
https://bayleykatherine.blogspot.com/2015/06/silent-pain.html
From the start of our journey to a diagnosis to where we are today...
My First Doctor's Appointment:
The doctor's appointment went nothing like we expected! It was so hard and not what we hoped for! It was definitely broken and it wrecked me!
We got up and we got to the appointment on time-- woot woot! (I thought that we might just have to cancel at the last minute because I just honestly didn't know if I could get out of bed, but by the grace of God, we made it! Praise the Lord!) It was a weird feeling, going into this appointment with hope and fear all at once. Wanting this appointment and at the same time, so not wanting to go through this and really face these issues. We desperately need answers for all that has been going on with my health. Honestly, though, the only thing I'm sure of is Jesus. It's been a fight, but I can honestly say that I am sure of Jesus. He is good and He has it all.
We got in the office and everything went haywire! It was hard and when the doctor left the room I kind of blew up (in a quiet and confused way) to my mom, who by God's grace, was with me. I almost cried and she almost cried and we were both a mess. We left and I not-so-quietly blew up to the rest of the fam. I freaked out, was angry, and cried on the way to McDonald's. I then proceeded to cry AT MCDONALD'S! Y'all! Seriously in the booth at McDonald's crying! It was that hard! We didn't get answers like we had hoped, but instead more questions. I had to make decisions about what to do next as I was presented with tests she wanted to run and treatment she wanted to start that I wasn't at all sure about! I lost my marbles trying to figure out what to do! I could refuse and risk not getting answers or I could go ahead and risk further potential damage and seizures and all sorts of other things that I just couldn't bear the thought of. I got advice from Mom and Dad, hugs all around, prayers from people everywhere, and Jesus always! Praise the Lord!
Wrestling with the Lord and Coping After that Appointment:
After the appointment and for days after I was on a struggle bus like I had never been on before! I was handling it all worse than I could have imagined and it broke me in ways I can't even describe. I was angry at God and at the world. I didn't think I was mad at God, but I was. I was mad that nothing made sense and I felt so lost. I was mad because my life was a mess and how in the world can I live like this anymore?? How was this supposed to work? What am I supposed to do?! I just didn't want to deal anymore! I was questioning myself, questioning God's goodness and if He was truly in all things. I was wrestling in ways I never have before! The Lord brought me to repentance and showed me the way I should go and I am just in awe!! He is so kind and merciful!! So, so good to us! He is teaching me and I'm still struggling, but He knows my brokenness and is bringing beauty from these dark ashes!!
I'm learning again how to hold joy and sorrow in the same hand. ♥️
The First Test (August 8th):
The first test was blood work and it went so well!! I was so nervous because the last time I had blood work done I felt a little dizzy and that was six years ago when they were first trying to diagnose me and I was so much healthier back then. We were nervous, but it went way better than expected and the Lord answered prayers in mighty ways! We got the results back a few days later and everything came back within normal range. It was weird feeling what we felt...what we feel. Happy because those things were ruled out, but also grieving the fact that we still didn't have answers and we were going to have to proceed with additional tests, the next harder than the one before.
The Second Test (August 17th):
The second test was an EEG. It was scary walking into it because I've had two before and they went so good, no problems, but again, I was healthier then. We had no idea how it would go and exactly what would happen. We prayed so much and so many of you were praying with us and we so appreciate you!!! Thank you for praying with us & for us!!! ♥️ We got to the doctor's office and it was just Mom, the girls and I. It was early in the morning and super early for my epileptic self to be out of the house, much less going to take a risky test! She called me back and said Mom couldn't come with me so I was by myself this time. As we were walking back I was asking her what was going to happen, hoping it wouldn't be the same tests this time around, but she said it was and I was calm and adulty for about two minutes before I freaked out on her and cried. If you have never had an EEG, let me explain: From my experience, after she preps my head and marks it off, she attaches wires to my head and ears (weird right?), sits down, gets the computer ready and does three things. One: I have to close my eyes (big seizure trigger for me), two: turns on flashing lights (huge trigger!) and I have to sit under them, and three: I have to basically hyperventilate for two whole minutes. No easy feat and JESUS BROUGHT ME THROUGH IT!! So graciously!!
As an adult (God worked this out so perfectly!) I can refuse treatment or any procedure, etc. that I don't feel comfortable with so I did. I don't take this responsibility lightly. I could have walked away in the very beginning, but I felt the Lord pressing it on my heart to stay, I didn't have a peace from Him to walk away so with Him as my strength, I stayed. When she asked me if I wanted to refuse the lights, I felt a peace about saying yes. We had worked it out for me to not close my eyes-- Praise the Lord! I am so grateful for His provision and protection! The triggers left were sitting still and the breathing/hyperventilating for two (three?) minutes and GOD SAW ME THROUGH! He is the ONLY strength in me! Sometimes His strength doesn't look like what we prayed for, what we wanted or imagined or what we thought it would. Sometimes it actually looks really different and we can't see how it could be Him strengthening because it looks like weakness, but He is strengthening us! It just looks different! Just because His strength doesn't look the way we hoped doesn't mean He is any less strong or that He isn't listening or that He doesn't care- I promise He does! It just looks different! Just because it looks different doesn't mean He is any less good- He is *so* good! Just because it looks different doesn't mean it's not beautiful. It's just different. I made it and walked out with a smile because Jesus is my strength and He is so faithful and gracious! I am so grateful!
The Third Test (September 7th):
The third test was an MRI. This was by far the scariest test for me! Everything about this has seizure written all over it! It was terrifying! Making this decision seriously so, so hard! Lots of back and forth and running, trying to talked myself into and out of doing it. Trying to convince myself and my parents that I didn't really need it or we could find another way. Running. I was running. Terrified. So scared. One night when Mom nd I were up so stinking late she was talking with me and the Lord showed me so sin in my heart and showed me exactly what I needed to do-- the MRI. I had to do it. He was never any less God or any less sovereign and He graciously showed me that no matter what His will was, no matter what happened, it was for my good and His glory. I was so scared, but at peace, too. I know God is on His throne and His will is good. There were so may people praying for me, so much encouragement, so much inspiration from brave people, from people that love and seek Jesus and the Lord kept bringing them to mind. Thank You, Lord! Oh, the grace of God! The mercy! Thank You, Lord God Almighty!
A man came out and called my name and when my Dad saw him... I don't know how to really explain... Jesus gives in great abundance! Oh, He does! My dad knew him and they were friends! It gave us such peace and knowing that a friend of my daddy's was going to be taking care of me... a precious gift...for all of us. I almost cried and just wow God! He was funny and compassionate. He listened and made me feel safe. He's bald like my daddy. He was exactly what I needed. God knew that. He knows what I need and graciously gives in great abundance.
I laid down and was so scared. Writing this is hard. It's bringing back a lot of hurt and that feeling of fear and panic, but Jesus. Here we go...after we got at set up and started I began to panic and feel "seizure ish" so I yelled for Mom and she couldn't hear me at first because y'all! That thing is so loud! And she has earplugs (because it's sooo loud!) so I got louder, she got up, he asked me if I was okay and after a bit we began again. We had to start all over. Mom stood right next to me the rest of the time and held my hand. I cried almost the whole time I was in that tube. Cried out of utter gratefulness because God is so gracious. He gives good gifts. He gave me Mrs. Jayne. Mom had been at her house and they were talking about the MRI and she asked Mom what time it was and told Mom she'd be on her knees. Every time I imagined Mrs. Jayne on her knees praying for me, I cried. Grateful. Blessed. Jesus. Grace. Praise. God gave me lots of things to be grateful for and thing to think about and remember. He gave me this precious family and a wonderful community, people that love me and I get the privilege of loving. Proverbs 3:5-6 "Trust in the Lord with all your heart, And lean not on your own understanding; In all your ways acknowledge Him, And He shall direct your paths." He gave me that verse.
As I'm remembering being in that tube with these things going through my mind and tears streaming down my face, holding Mom's hand, my heart hurts, but mostly, mostly Jesus. Gratitude and awe.
Halfway through they came in to add contrast (needle + dye + arm = contrast to my brain:)). I came out and I had already told him that the contrast had to go in my left arm so He prepped me and as he did he saw my tattoo that says "there will be a day" and talked with me about it for a second although he did most of the talking and I cried remembering that indeed "there will be a day" (Revelation 21:4-5). I thought about how awesome it is that God worked this out so that every time I get a shot or blood drawn, people see truth and I get to talk to them about Jesus or Jesus does what He did here, I could barely talk and still he saw it. God uses it. Even if it's just me being blessed or reminded of truth, He is using it. I asked how much longer and he gave me some happy news that it was only a little bit longer! Yay! When it was done they took care of me and were so gentle and compassionate! There was a nice man helping him, as well and I am just so grateful for them both!
I felt like crying as we walked down the hallway to the waiting room and when I saw my people sitting there looking at me, I just burst. G berry gave me a sweet hug and held me while I stood there crying. We debriefed and walked to the car and off we went to get a smoothie. I was weak and in pain and grateful.
Thank you sooo much for reading!! Part two is coming at ya tomorrow, Lord-willing!
-b
The Lord is Amazing! Does the impossible when ever we least expect!
ReplyDeleteAmen! He is so, so good and His timing is always perfect! Thank you for reading and commenting, Trinity! It is such a blessing & your kind words are a gift!
ReplyDelete