Normally I would end 2017 with a post highlighting everything that happened this year but this year something happened that has turned my world upside down. I'm sure many of you have been wondering where I've been and I've started post after post, only to delete it later. Words do not feel like they are enough to convey how I am feeling at this moment in my life, but I am going to try my best to share my heart.
All year long, Louie, my wonderful, yet pessimistic husband, would tell me that he knew something dark was on the horizon. I told him that meant that we needed to enjoy the "hill" time before we were plunged into the "valley."
2017 started off pretty great...
Our "hill" time wasn't anything special. We lived day by day, enduring daily trails, but nothing major. Louie and me are still happily married and celebrated four years of marriage in April. We also celebrated Dylan's first full year being type 1 diabetic in August, which was awesome. His A1C's are getting better every doctor's visit and he's growing which is such a blessing. We watched Eric, our oldest, play 7th grade football this past season, and as Eric continues playing the trumpet, Dylan started beginner orchestra playing the viola. Working part time has allowed me to be home with my boys when they need me and for me to participate in all of their school activities. Life was hectic, and pretty stressful at times, but I was happy. Very happy.
Then everything changed...
I have struggled with migraines for years. They started when I was in junior high and have been a nuisance ever since. I have a headache every single day but my migraines normally hit every few months. I noticed my migraines started to become more frequent as the year progressed and every one that hit seemed to feel worse than the next. By November, I was only getting a few days rest before another bad one hit.
November 15th I called in sick to work, and literally couldn't even get myself out of bed the pain was so severe. I started feeling numbness throughout my left side, but I figured it was due to being in bed the whole day. That night Louie asked me if I wanted to go to the hospital and I told him no. After all the hospital stays I've had the past few yeas I am done with hospitals!
November 16th I was worse than the day before. As the day went on, I felt like someone was sitting on my chest and I couldn't breathe. Louie came home early from work and looked up all my symptoms. We thought I might be having a heart attack but couldn't be sure. Again he asked me if I wanted to go to the hospital. Again I told him no. (Can you tell I'm stubborn or what?) Louie left me to rest and within a few minutes I am crying for him, telling him to call 9-1-1. This shooting pain started radiating from my chest all down my left side and fear seized me. I think I'm having a heart attack!
The paramedics were here in two minutes and had me hooked up to the EKG in a matter of seconds. It showed that I wasn't having a heart attack but my blood pressure was through the roof, the pain was still shooting through me, and I couldn't breathe so they took me to the emergency room.
They ran all the necessary tests, and everything came back normal but Louie and me both knew this was not normal. All of the medical issues I've had in the past were nothing in comparison to what I was experiencing. The ER was very busy that night and I think the doctor was trying to get another bed free but Louie requested that he run an MRI on me. You could tell the doctor was very put out by this request since they would have to call in the MRI team (it was after midnight and the MRI techs do not do overnights) and it would be several hours before they could do the test, but Louie insisted and the doctor left in a huff. I didn't see anyone for hours. I just laid there in the hospital room wondering what was wrong with me.
November 17th I ended up getting two MRI's in the wee hours of the morning and the MRI's did show something, so they chose to admit to the hospital so they could do further testing. The look on the doctor's face was one of sadness when he told us that it looked like the beginning stages of MS.
I waited almost 24 hours to get into a room and was immediately ordered to have another MRI done. I was put on pain medication to help with the radiating pain, my atypical migraine, and extreme dizziness and nausea.
I was in the hospital for almost two weeks, and even celebrated Thanksgiving 2017 there. That part was so hard for me, but I got to eat a delicious pumpkin cheesecake from the hospital cafe, and get some cuddles from my family.
The rest of the time was insanely lonely. I slept as much as I could because when I was asleep I didn't have to think. The doctor's told me that they atypical migraines were due to four lesions on my brain. It was also why I was having stroke-like symptoms, even though I never had a stroke. I now sometimes say things backwards and I will completely forget what I am saying or what was said to me. From what one of the tests said, my brain like it is right now, is one step up from a dementia patient. Not something a 36-year-old wife and mother wants to hear.
There was also something in the third MRI that rocked us all to the core: they found multiple tumors all along my spine. They are called schwannoma's (or neurofibromatosis) and they referred me to a neurologist, who refused to see me for days, and then didn't really give us any information other than this was going to be a long road ahead with most likely surgery and possible chemo and/or radiation depending on if the tumors are cancerous or not. To know that tumors are growing in my body is bad enough, but then they say surgery! My body does not do well with anesthesia at all. The last time I went under they almost couldn't get me out! Plus, where the surgery would be: at the base of my skull. One false move and I could be paralyzed. Such scary thoughts!
How 2017 ended...
It's been over a month, and I still have trouble walking by myself, and am in constant pain. On my decent days, I can sit up and write, like I'm doing right now, but other days I disappear into Netflix/Hulu binges and try to forget everything that is happening to me. If I am able to venture out I'm usually in a wheelchair or using a walker, due to the extreme dizziness caused by the tumors. I feel like I'm in a nightmare that I can't wake up from.
My family has been absolutely amazing and I have realized through all of this who my true friends are, which has been almost as painful as the tumors. To realize that people who you thought would always be there for you, and haven't been there at all, really hurts my heart. But I can't focus on that. I have enough that I am struggling with to put my focus on those toxic relationships. So, I am focusing on those that truly care about me and about the next step. I have also been trying to stay off of social media for this very reason.
I saw a neurologist PA and all they're wanting to do at the moment is treat the migraines, even though the tumors are causing me tremendous pain, so we are currently seeking a second opinion. Truth be told, I am petrified about 2018 and what it's going to bring. Usually I look to the new year as a new beginning, a fresh start, but this year I don't feel that way. For the first time in my life I am scared of the future.
Louie wants me to document my journey, so I will be posting on here regularly, and plan on starting to vlog on my YouTube page as well, which I will link up here. He doesn't want me to bottle everything up inside, which is my tendency. So, that's my only New Years Resolution: to document my journey: the good, the bad, and the ugly; and trust me, when you see me with no makeup you'll see the ugly. ;)
Have a safe and Happy New Year!
3
All year long, Louie, my wonderful, yet pessimistic husband, would tell me that he knew something dark was on the horizon. I told him that meant that we needed to enjoy the "hill" time before we were plunged into the "valley."
2017 started off pretty great...
Our "hill" time wasn't anything special. We lived day by day, enduring daily trails, but nothing major. Louie and me are still happily married and celebrated four years of marriage in April. We also celebrated Dylan's first full year being type 1 diabetic in August, which was awesome. His A1C's are getting better every doctor's visit and he's growing which is such a blessing. We watched Eric, our oldest, play 7th grade football this past season, and as Eric continues playing the trumpet, Dylan started beginner orchestra playing the viola. Working part time has allowed me to be home with my boys when they need me and for me to participate in all of their school activities. Life was hectic, and pretty stressful at times, but I was happy. Very happy.
Then everything changed...
I have struggled with migraines for years. They started when I was in junior high and have been a nuisance ever since. I have a headache every single day but my migraines normally hit every few months. I noticed my migraines started to become more frequent as the year progressed and every one that hit seemed to feel worse than the next. By November, I was only getting a few days rest before another bad one hit.
November 15th I called in sick to work, and literally couldn't even get myself out of bed the pain was so severe. I started feeling numbness throughout my left side, but I figured it was due to being in bed the whole day. That night Louie asked me if I wanted to go to the hospital and I told him no. After all the hospital stays I've had the past few yeas I am done with hospitals!
November 16th I was worse than the day before. As the day went on, I felt like someone was sitting on my chest and I couldn't breathe. Louie came home early from work and looked up all my symptoms. We thought I might be having a heart attack but couldn't be sure. Again he asked me if I wanted to go to the hospital. Again I told him no. (Can you tell I'm stubborn or what?) Louie left me to rest and within a few minutes I am crying for him, telling him to call 9-1-1. This shooting pain started radiating from my chest all down my left side and fear seized me. I think I'm having a heart attack!
The paramedics were here in two minutes and had me hooked up to the EKG in a matter of seconds. It showed that I wasn't having a heart attack but my blood pressure was through the roof, the pain was still shooting through me, and I couldn't breathe so they took me to the emergency room.
They ran all the necessary tests, and everything came back normal but Louie and me both knew this was not normal. All of the medical issues I've had in the past were nothing in comparison to what I was experiencing. The ER was very busy that night and I think the doctor was trying to get another bed free but Louie requested that he run an MRI on me. You could tell the doctor was very put out by this request since they would have to call in the MRI team (it was after midnight and the MRI techs do not do overnights) and it would be several hours before they could do the test, but Louie insisted and the doctor left in a huff. I didn't see anyone for hours. I just laid there in the hospital room wondering what was wrong with me.
November 17th I ended up getting two MRI's in the wee hours of the morning and the MRI's did show something, so they chose to admit to the hospital so they could do further testing. The look on the doctor's face was one of sadness when he told us that it looked like the beginning stages of MS.
I waited almost 24 hours to get into a room and was immediately ordered to have another MRI done. I was put on pain medication to help with the radiating pain, my atypical migraine, and extreme dizziness and nausea.
I was in the hospital for almost two weeks, and even celebrated Thanksgiving 2017 there. That part was so hard for me, but I got to eat a delicious pumpkin cheesecake from the hospital cafe, and get some cuddles from my family.
The rest of the time was insanely lonely. I slept as much as I could because when I was asleep I didn't have to think. The doctor's told me that they atypical migraines were due to four lesions on my brain. It was also why I was having stroke-like symptoms, even though I never had a stroke. I now sometimes say things backwards and I will completely forget what I am saying or what was said to me. From what one of the tests said, my brain like it is right now, is one step up from a dementia patient. Not something a 36-year-old wife and mother wants to hear.
There was also something in the third MRI that rocked us all to the core: they found multiple tumors all along my spine. They are called schwannoma's (or neurofibromatosis) and they referred me to a neurologist, who refused to see me for days, and then didn't really give us any information other than this was going to be a long road ahead with most likely surgery and possible chemo and/or radiation depending on if the tumors are cancerous or not. To know that tumors are growing in my body is bad enough, but then they say surgery! My body does not do well with anesthesia at all. The last time I went under they almost couldn't get me out! Plus, where the surgery would be: at the base of my skull. One false move and I could be paralyzed. Such scary thoughts!
How 2017 ended...
It's been over a month, and I still have trouble walking by myself, and am in constant pain. On my decent days, I can sit up and write, like I'm doing right now, but other days I disappear into Netflix/Hulu binges and try to forget everything that is happening to me. If I am able to venture out I'm usually in a wheelchair or using a walker, due to the extreme dizziness caused by the tumors. I feel like I'm in a nightmare that I can't wake up from.
My family has been absolutely amazing and I have realized through all of this who my true friends are, which has been almost as painful as the tumors. To realize that people who you thought would always be there for you, and haven't been there at all, really hurts my heart. But I can't focus on that. I have enough that I am struggling with to put my focus on those toxic relationships. So, I am focusing on those that truly care about me and about the next step. I have also been trying to stay off of social media for this very reason.
I saw a neurologist PA and all they're wanting to do at the moment is treat the migraines, even though the tumors are causing me tremendous pain, so we are currently seeking a second opinion. Truth be told, I am petrified about 2018 and what it's going to bring. Usually I look to the new year as a new beginning, a fresh start, but this year I don't feel that way. For the first time in my life I am scared of the future.
Louie wants me to document my journey, so I will be posting on here regularly, and plan on starting to vlog on my YouTube page as well, which I will link up here. He doesn't want me to bottle everything up inside, which is my tendency. So, that's my only New Years Resolution: to document my journey: the good, the bad, and the ugly; and trust me, when you see me with no makeup you'll see the ugly. ;)
Have a safe and Happy New Year!
