It is stunning how many "little things" have been effected by this. Some people have told me that they struggle with some of my "little things" on a daily basis, but for me these "little things" are totally not my norm.
I don't really recall much from the hospital or the drive from the hospital to the rehab facility, but my husband drove by our neighborhood on the way and asked if I knew which house was ours. We've only lived here a little over a year and most of my disappearing memories are anything current to probably about 6-7 years ago. I have been getting some memories back but there are still big holes I am missing.
I kept asking about work but thought I was still working at my last employer which I left in May 2014. I forgot about all of the new businesses we had in town and the street changes made. Making the turn from Kingshighway to go towards the new businesses across the highway scared me the first time. I thought my husband was just randomly driving off the road. Haha! And, holy roundabouts...why are we not using stoplights again??! (sorry, ignore my tangent) I forgot what foods I like. I forgot what clothes I have. I forgot where everything is (at home, at work, on the computer, etc). I forgot how to cook. I forgot where certain buttons are in my vehicle (no, I'm not driving but I like to control my heat). I forgot how to operate my phone, what apps are called, where I've put them on my homescreens. I forgot how to get to places. I forgot where things are in stores we shop at. I forgot how to get to our church but once we arrived and worship started I saw people clapping so I tried to clap along and realized I didn't know how to do it and couldn't figure out how to tell my brain what to do. I love to sing but I couldn't remember words to songs and once I did I couldn't sing it fast enough to keep up. It's difficult to remember what things are called and even just words in general sometimes when I'm having a conversation. And, it's really difficult to remember names even though I can normally recognize that I know a person by their face. Timelines are also very difficult. I've been having issues lately with retaining new memories. Although, I can usually remember that I've had a conversation about something but cannot remember who I had that conversation with. So, I feel like I'm repeating things and have to keep asking if I've already told someone something.
And, I know this is irrelevant to the blog title, but other than my husband, my grandma is my ROCK!! At almost 88 years old and even with getting a new cell phone in the middle of all of this, she continues to text me daily. She is amazing and I LOVE HER SO MUCH! It literally brings me to tears to think of a future without her. Hayden is always asking me when we can go visit next. We've been thinning our busy schedules since all of this has happened so visiting more often is one of our main goals.
I hope all of you aren't taking the little things for granted. They are what makes you who you are. My husband noted how I've been telling everyone that I love them and while I didn't notice it I am so grateful to be able to say that and just taking everything day by day I don't want to have any regrets.
So, Love. Love deeply.
Wednesday, January 30, 2019
Monday, January 21, 2019
A Week of Missing Memories
The following is how the rest of the week went. A lot of this is from my husband's prospective as I have few memories from this week.
Tuesday, 11/27/18 - My husband said I was repeating the same questions every 7 minutes "Where am I?", "Why doesn't my brain work?", and "I want to go home."
Our 11 and 13 year old sons were able to come visit this day. It was a very confusing day for them. I've been told I said "Hi" and "How is school?" but not much conversation happened. I don't remember seeing them. My words were very slow and I would stop and "look up" into my brain and try to think of a word I wanted to say. I was very confused and nothing made sense.
Wednesday, 11/28/18 - The first cerebral angiogram was performed finding the cause for the hemorrhaging and other symptoms. I did not have a true diagnosis until these results came in. My husband says I barely spoke this day at all but when I did it was the same questions as the day before and a lot of confusion.
Thursday, 11/29/18 - Even though my memory of this day is very scant, I know I had visitors this evening. My husband has a video of me sitting up in the hospital bed having conversations with them and being somewhat "normal" although watching the videos now, my voice is different and does not sound like me.
Friday, 11/30/18 - After waking up my husband was asking what I wanted for breakfast and said I kept looking at him strangely so he asked me my name and I mumbled something but definitely not my name, more like a "Mumoha", had a "freak out" moment, then closed my eyes and didn't talk. I was moved back to ICU and an EEG and long-term EEG was performed on this day and was found to be abnormal and indicative of a focal cerebral dysfunction in the left temporal region.
Tuesday, 11/27/18 - My husband said I was repeating the same questions every 7 minutes "Where am I?", "Why doesn't my brain work?", and "I want to go home."
Our 11 and 13 year old sons were able to come visit this day. It was a very confusing day for them. I've been told I said "Hi" and "How is school?" but not much conversation happened. I don't remember seeing them. My words were very slow and I would stop and "look up" into my brain and try to think of a word I wanted to say. I was very confused and nothing made sense.
Wednesday, 11/28/18 - The first cerebral angiogram was performed finding the cause for the hemorrhaging and other symptoms. I did not have a true diagnosis until these results came in. My husband says I barely spoke this day at all but when I did it was the same questions as the day before and a lot of confusion.
Thursday, 11/29/18 - Even though my memory of this day is very scant, I know I had visitors this evening. My husband has a video of me sitting up in the hospital bed having conversations with them and being somewhat "normal" although watching the videos now, my voice is different and does not sound like me.
Friday, 11/30/18 - After waking up my husband was asking what I wanted for breakfast and said I kept looking at him strangely so he asked me my name and I mumbled something but definitely not my name, more like a "Mumoha", had a "freak out" moment, then closed my eyes and didn't talk. I was moved back to ICU and an EEG and long-term EEG was performed on this day and was found to be abnormal and indicative of a focal cerebral dysfunction in the left temporal region.
Saturday, 12/1/18 - I was moved back to the regular neuro floor this morning. My husband went home to spend time with our boys again this day. A friend came up that evening to stay with me overnight. She could probably tell you a lot more but I know it wasn't the best experience for her and I don't want to prod her with questions.
Sunday, 12/2/18 - I know that my morning was similar to Friday morning. I could hear everything around me but could not figure out how to tell my brain to open my eyes or move my body. I was sent for another scan but there were no changes. My husband brought the boys back up with him. By the afternoon I was able to open my eyes again but I was not speaking. I was writing (in horrible handwriting for those of you that know my handwriting) to ask and answer questions. We had more friends come up this evening and they were able to take the boys back with them so my husband could stay.
Monday, 12/3/18 - It was determined that I was stable enough to be released to a local medical rehab facility. A friend came by to visit and was barely there 10 minutes before we got the news and were packing our things to leave. We are grateful he was there because he was able to follow us back to our hometown. This is the first day that I think it really clicked that I was not remembering things. I was waiting at the door in a wheelchair with someone from the hospital while my husband went to get our vehicle and the man asked me what type of vehicle we should be looking for and I realized that I didn't know.
Tuesday, 12/4/18 through Friday, 12/7/18 - I was ordered to go through physical therapy, occupational therapy and speech therapy. I did 1 hour of each per day. I wish I would have kept some of the papers I was writing on then. The difference in my handwriting day to day was extraordinary! I did not recognize the handwriting though and had so much difficulty with the thought processes for the exercises in physical therapy. I was walking with my toes first, swinging both of my arms in the same direction at the same time, and just to think of left or right took a lot of brain power. I was so exhausted every day. We had several friends come and visit to help keep my mind off things and be as "normal" as possible. The boys got to come visit too. My husband was keeping the boys at home now that we were in the same town and he was going home in the evenings to be with them overnight. Most nights I didn't care to be "alone" in the rehab facility. I was so exhausted I would just crash...except for the hourly checks by staff to check my vitals and such. I was napping during the day as well because I just couldn't get enough quality rest.
Friday, 12/7/18 4pm - Released to go HOME!!!!
Sunday, 12/2/18 - I know that my morning was similar to Friday morning. I could hear everything around me but could not figure out how to tell my brain to open my eyes or move my body. I was sent for another scan but there were no changes. My husband brought the boys back up with him. By the afternoon I was able to open my eyes again but I was not speaking. I was writing (in horrible handwriting for those of you that know my handwriting) to ask and answer questions. We had more friends come up this evening and they were able to take the boys back with them so my husband could stay.
Monday, 12/3/18 - It was determined that I was stable enough to be released to a local medical rehab facility. A friend came by to visit and was barely there 10 minutes before we got the news and were packing our things to leave. We are grateful he was there because he was able to follow us back to our hometown. This is the first day that I think it really clicked that I was not remembering things. I was waiting at the door in a wheelchair with someone from the hospital while my husband went to get our vehicle and the man asked me what type of vehicle we should be looking for and I realized that I didn't know.
Tuesday, 12/4/18 through Friday, 12/7/18 - I was ordered to go through physical therapy, occupational therapy and speech therapy. I did 1 hour of each per day. I wish I would have kept some of the papers I was writing on then. The difference in my handwriting day to day was extraordinary! I did not recognize the handwriting though and had so much difficulty with the thought processes for the exercises in physical therapy. I was walking with my toes first, swinging both of my arms in the same direction at the same time, and just to think of left or right took a lot of brain power. I was so exhausted every day. We had several friends come and visit to help keep my mind off things and be as "normal" as possible. The boys got to come visit too. My husband was keeping the boys at home now that we were in the same town and he was going home in the evenings to be with them overnight. Most nights I didn't care to be "alone" in the rehab facility. I was so exhausted I would just crash...except for the hourly checks by staff to check my vitals and such. I was napping during the day as well because I just couldn't get enough quality rest.
Friday, 12/7/18 4pm - Released to go HOME!!!!
It is so evident to me that I am still here for a reason! I can tell my story and share the amazing works of our Lord and Savior Jesus Christ. I can hardly even describe the feeling, but I knew He was with me the entire time and even before this, preparing me and our family with everything we would need to get through this. The friends, family, fellow church members...everything came together in only a way He could provide.
Tuesday, January 1, 2019
The day it happened
Fair warning: this will be a long read with a lot of details.
Most of these details are based from our home security cameras that my husband was able to provide to my medical team. I only have 3 screenshot type memories of this first day.
The day before - Sunday, 11/25/18 9:39 pm - I texted my sister before bed asking for prayer "just not feeling myself". My husband and I prayed together before going to sleep as well. I wasn't feeling "right" but couldn't place what the issue was.
The day - Monday, 11/26/18 6:22 am - I had texted my husband like I normally do (he usually leaves for work before we are awake), he had let me know that his drive to work was icy. I started my vehicle to warm up and take the boys to the bus at 7am. A couple minutes prior to 7:00 I got a sudden migraine with aura (I've had headaches and migraines of varying intensities for as much of my life as I can remember with the auras usually being just a few times a year but for about the past 3 years it has been consistent with having auras every time I would have a migraine). I sent the boys on to walk to the bus instead of driving them since I couldn't see fully due to the aura. I don't actually remember if I was able to take medication for my migraine or not. I went to my bathroom to continue getting ready for work. That is the last clear memory I have of that day (other than the 3 "screenshots") and the point at which I last remember having hearing. The first "screenshot" is me standing on the porch holding myself against the house with the screen door. The second is standing outside a different house with a man to my left on the phone. The third was sitting in the back of an ambulance with a woman to my left and the back doors open. I don't recall hearing a single thing during any of these moments. That in itself is a blessing because if I had heard my vehicle running when I went outside I'm not sure what would have happened next.
From my husband's point of view - He was called into the office at his work for a phone call around 10 am where he was notified by a Police Officer that I was in the ER on life support. He immediately left work and drove there. Within 10 minutes of arriving they were airlifting me to a hospital in a bigger city. As soon as he tried leaving to head to where I was being sent he was stopped by our pastor who drove him there. During the drive he was able to pull video from our home security and check the house to get a timeline and events of what happened.
Timeline - I sent the boys off to the bus a couple minutes before 7:00. I had texted my husband at 7:17 am but it wasn't clear what I was trying to say. The first sentence was clear "Please pray for me" but it was evident that I was already not myself because I had used the regular text function instead of the WiFi texting app (he doesn't have enough service at work to receive regular text). The security video showed where I made my way to the living room shortly after that, paused motionless looking out the front door for a couple minutes then went to sit on the couch around 7:20 am. From that point on I was making loud, uninterpreted noise and my dogs were barking nonstop running back and forth between me and the front windows. They could sense something was going on. My right arm appeared to be locked in a bent upright position (like the letter L). This continued until around 9:00 am when I randomly stood up and walked to the front door, stepped down to the porch but held myself against the house with the door making screaming like sounds and what was interpreted as "please help me". After about 10 minutes I stepped away from the screen door, closed it and began walking down the street. The high on that day was 31 degrees so anyone that knows me knows that I would have never willingly went outside with just work clothes on in that cold. The doctors have no explanation as to why I was able to just get up at that point, but I do. Jesus was there with me. He helped put my armor on and fought alongside me. I had walked a few houses down where there were servicemen working on a house that I must have seen and attempted to get help from. There were two men at that house working that helped me by calling 911. After having an MRI at the local Emergency Room I was airlifted to a larger hospital to their Neuro ICU with an original admission diagnosis of altered mental status and possible seizure with multiple known brain hemorrhages found during the scan at the local hospital.
Watch for the next blog soon! I'll have daily details about the rest of my hospital stay and more!
Most of these details are based from our home security cameras that my husband was able to provide to my medical team. I only have 3 screenshot type memories of this first day.
The day before - Sunday, 11/25/18 9:39 pm - I texted my sister before bed asking for prayer "just not feeling myself". My husband and I prayed together before going to sleep as well. I wasn't feeling "right" but couldn't place what the issue was.
The day - Monday, 11/26/18 6:22 am - I had texted my husband like I normally do (he usually leaves for work before we are awake), he had let me know that his drive to work was icy. I started my vehicle to warm up and take the boys to the bus at 7am. A couple minutes prior to 7:00 I got a sudden migraine with aura (I've had headaches and migraines of varying intensities for as much of my life as I can remember with the auras usually being just a few times a year but for about the past 3 years it has been consistent with having auras every time I would have a migraine). I sent the boys on to walk to the bus instead of driving them since I couldn't see fully due to the aura. I don't actually remember if I was able to take medication for my migraine or not. I went to my bathroom to continue getting ready for work. That is the last clear memory I have of that day (other than the 3 "screenshots") and the point at which I last remember having hearing. The first "screenshot" is me standing on the porch holding myself against the house with the screen door. The second is standing outside a different house with a man to my left on the phone. The third was sitting in the back of an ambulance with a woman to my left and the back doors open. I don't recall hearing a single thing during any of these moments. That in itself is a blessing because if I had heard my vehicle running when I went outside I'm not sure what would have happened next.
From my husband's point of view - He was called into the office at his work for a phone call around 10 am where he was notified by a Police Officer that I was in the ER on life support. He immediately left work and drove there. Within 10 minutes of arriving they were airlifting me to a hospital in a bigger city. As soon as he tried leaving to head to where I was being sent he was stopped by our pastor who drove him there. During the drive he was able to pull video from our home security and check the house to get a timeline and events of what happened.
Timeline - I sent the boys off to the bus a couple minutes before 7:00. I had texted my husband at 7:17 am but it wasn't clear what I was trying to say. The first sentence was clear "Please pray for me" but it was evident that I was already not myself because I had used the regular text function instead of the WiFi texting app (he doesn't have enough service at work to receive regular text). The security video showed where I made my way to the living room shortly after that, paused motionless looking out the front door for a couple minutes then went to sit on the couch around 7:20 am. From that point on I was making loud, uninterpreted noise and my dogs were barking nonstop running back and forth between me and the front windows. They could sense something was going on. My right arm appeared to be locked in a bent upright position (like the letter L). This continued until around 9:00 am when I randomly stood up and walked to the front door, stepped down to the porch but held myself against the house with the door making screaming like sounds and what was interpreted as "please help me". After about 10 minutes I stepped away from the screen door, closed it and began walking down the street. The high on that day was 31 degrees so anyone that knows me knows that I would have never willingly went outside with just work clothes on in that cold. The doctors have no explanation as to why I was able to just get up at that point, but I do. Jesus was there with me. He helped put my armor on and fought alongside me. I had walked a few houses down where there were servicemen working on a house that I must have seen and attempted to get help from. There were two men at that house working that helped me by calling 911. After having an MRI at the local Emergency Room I was airlifted to a larger hospital to their Neuro ICU with an original admission diagnosis of altered mental status and possible seizure with multiple known brain hemorrhages found during the scan at the local hospital.
Watch for the next blog soon! I'll have daily details about the rest of my hospital stay and more!
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