Many times on this journey I have been made aware that my children are being affected by the changes to their schedule and home. This was recently brought home to me when my middle child had a sobbing breakdown that mom was going to go to the doctor and wasn't going home. This was shared with my husband after a day of tantrums and yelling that we couldn't figure out. Here he was, my sweet son, harboring a deep fear in his heart that mommy was not going to stay with him. Speaking to friends also dealing with family illness, fears and changes in children's behavior is common.
There has to be a positive aspect to this. There has to be something strength based that my children can get out of it. Today I saw the following article. Enjoy!
https://www.understood.org/en/friends-feelings/managing-feelings/feeling-victimized/4-strengths-that-come-from-challenges?
God loves you. I love you. You will get through today.
Thursday, July 16, 2015
Wednesday, July 15, 2015
Stay'n Alive
Recently a dear friend of mine reminded me of the value of music in healing. With my unreliable hearing this has become an especially difficult challenge. I love music. Loud music or soft music. Classical, new age, techno, funk, some jazz, folk music, rock and roll both new and old. Of all these, disco holds a special place in my heart. It is my happy kick butt music that I have no problem listening to with windows down and my hair blowing back in the car. (That is a joy that will wait for another day.)
ABBA, Donna Summer, Barry White, the Bee Gees...it's a beautiful thing.
I have to be careful and selective listening to music now as it can easily overload my system. I spent time yesterday deliberately removed to listen to one of my favorite Bee Gees songs. It was worth it. I'm not up to turning up the volume or jamming through the house anytime time soon but it helped to remember that I am still here. It's important to make the most of it.
You are welcome to enjoy my personal anthem this week as I listen to Stay'n Alive. Kristine, thank you for the reminder that we can use music to heal.
God loves you. I love you. Never forget that.
ABBA, Donna Summer, Barry White, the Bee Gees...it's a beautiful thing.
I have to be careful and selective listening to music now as it can easily overload my system. I spent time yesterday deliberately removed to listen to one of my favorite Bee Gees songs. It was worth it. I'm not up to turning up the volume or jamming through the house anytime time soon but it helped to remember that I am still here. It's important to make the most of it.
You are welcome to enjoy my personal anthem this week as I listen to Stay'n Alive. Kristine, thank you for the reminder that we can use music to heal.
God loves you. I love you. Never forget that.
Tuesday, July 14, 2015
Being Busy
I'm not quite sure of where it started but this whole experience has left me thinking, a lot. (Probably too much.) I am left to think all the time. In my interactions with people I notice things I didn't see before. I have to take my time with everything and it leads to a deeper overall experience. Where ever I am I am there fully. I see more and experience things deeper. I am completely immersed in where I am and who I am with as long as I can be.
I see things like surprise, impatience, and sometimes a feeling that hovers over the edge of the conversation like people are just waiting to move on. (How much is long enough for me to wait?) A feeling that we do not really interact but instead as individuals we are waiting to rush to something more interesting, more urgent, (dare I say it) more important.
At these times I think how much I have missed. Before the tumor and this forced slow down, I rushed between events. Putting out fires, running a home, too busy with busyness that I really did not live.
I existed.
I existed physically but I never really immersed myself in those around me. My family, my friends, my God. When did I last take the time to forget me and become lost in the experience of someone else?
I am shocked at the selfishness I have seen in my own life. I get the sense that I existed with the belief that what I did and was doing was more interesting, more urgent, and more important. I could not see the needs that passed me by.
To my family, my friends, and my God:
I am sorry.
Let me say that again, I am sorry. I will use this second chance to not solely exist but to live, to share, and to be open to others. I will see you as you are and let you see me as I am. I am sorry for the busy, for the social mask that prevented us from really being as one. I love you. I think of you. I pray for you daily. I pray that I can be aware. Aware of you. Aware of your needs. And see what it is that my God would have me to do support you on your journey.
I see things like surprise, impatience, and sometimes a feeling that hovers over the edge of the conversation like people are just waiting to move on. (How much is long enough for me to wait?) A feeling that we do not really interact but instead as individuals we are waiting to rush to something more interesting, more urgent, (dare I say it) more important.
At these times I think how much I have missed. Before the tumor and this forced slow down, I rushed between events. Putting out fires, running a home, too busy with busyness that I really did not live.
I existed.
I existed physically but I never really immersed myself in those around me. My family, my friends, my God. When did I last take the time to forget me and become lost in the experience of someone else?
I am shocked at the selfishness I have seen in my own life. I get the sense that I existed with the belief that what I did and was doing was more interesting, more urgent, and more important. I could not see the needs that passed me by.
To my family, my friends, and my God:
I am sorry.
Let me say that again, I am sorry. I will use this second chance to not solely exist but to live, to share, and to be open to others. I will see you as you are and let you see me as I am. I am sorry for the busy, for the social mask that prevented us from really being as one. I love you. I think of you. I pray for you daily. I pray that I can be aware. Aware of you. Aware of your needs. And see what it is that my God would have me to do support you on your journey.
You are amazing and I love you. God loves you and you are ever in his care.(Even if you are too busy to notice right now.)
Becoming Bitter
In my reading I come across stories that I love. One friend cautioned me recently about avoiding the trap of bitterness. Bitterness for the loss, the change, even survivors guilt. The following story puts things in such great perspective.
May we all be able to better enlarge our sense of things. Have a great day!
We Are One: Become....: From Facebook....if it is posted there I figure it is meant to be shared. Nicole Daedone with Silka Jewell and 3 others An aging mast...
You are amazing and I love you. God loves you and you are ever in his care.
May we all be able to better enlarge our sense of things. Have a great day!
We Are One: Become....: From Facebook....if it is posted there I figure it is meant to be shared. Nicole Daedone with Silka Jewell and 3 others An aging mast...
You are amazing and I love you. God loves you and you are ever in his care.
Sunday, July 12, 2015
Baby Brain
After surgery my wonderful surgeon explained that my lost sense of taste, struggles with vision and hearing were the result of having him "playing around in my brain."
As I have gone on this journey, I find it easiest to picture my brain like that of a newborn, a few weeks old. Having three young boys just in that toddler/elementary school age this is a comparison that helps me be more patient with myself and explain to my children why mommy is not quite the same anymore.
I call this my "Baby Brain".
Combining words was a challenge. I had control of my vocabulary, but not always of how words connected and my ability to maintain conversation was short lived. By six to seven weeks post surgery, I and my little baby brain have come a long way. I now compare more to a four year old than a newborn with many of the same attendant issues; emotional regulation sucks, decision making and impulsivity are a problem, and maintaining connections/relationships between items is a challenge.
If given pictures of animals, for example, I could name the animal and potentially even tell you what they do, but I may not be able to tell you what sound they make.
I achieved stacking blocks at my last OT appointment and we got to 11 blocks. (This is really good.) I challenged myself further by insisting in taking them off one at a time without knocking them down. I had some close calls but made it. *Please don't tell my husband as prior to this I was the reigning Jenga champion. He might want a rematch.
I can name colors and differentiate between shades, as an artist this was a difficult challenge to face.
I still cannot balance for more than three seconds on either foot.
It's about baby steps with my baby brain. If you have a loved one coping post craniotomy or even living with an active tumor, cut them some slack. You would be surprised how hard what you do everyday really is.
You are amazing and I love you. God loves you and you are ever in his care.
As I have gone on this journey, I find it easiest to picture my brain like that of a newborn, a few weeks old. Having three young boys just in that toddler/elementary school age this is a comparison that helps me be more patient with myself and explain to my children why mommy is not quite the same anymore.
I call this my "Baby Brain".
Seriously my poor brain best compares to that of an infant progressing into toddlerhood. After surgery I had trouble with basic functions; breathing regularly, eating and digestion, voice control and word choice. My mealtime habits resembled an infant with a liquid or soft liquid diet; anything clear, colorless, and mushy.
Combining words was a challenge. I had control of my vocabulary, but not always of how words connected and my ability to maintain conversation was short lived. By six to seven weeks post surgery, I and my little baby brain have come a long way. I now compare more to a four year old than a newborn with many of the same attendant issues; emotional regulation sucks, decision making and impulsivity are a problem, and maintaining connections/relationships between items is a challenge.
If given pictures of animals, for example, I could name the animal and potentially even tell you what they do, but I may not be able to tell you what sound they make.
I achieved stacking blocks at my last OT appointment and we got to 11 blocks. (This is really good.) I challenged myself further by insisting in taking them off one at a time without knocking them down. I had some close calls but made it. *Please don't tell my husband as prior to this I was the reigning Jenga champion. He might want a rematch.
I can name colors and differentiate between shades, as an artist this was a difficult challenge to face.
I still cannot balance for more than three seconds on either foot.
It's about baby steps with my baby brain. If you have a loved one coping post craniotomy or even living with an active tumor, cut them some slack. You would be surprised how hard what you do everyday really is.
You are amazing and I love you. God loves you and you are ever in his care.
Friday, July 10, 2015
Warning- Explicit Language #2
Holy fucking hell.
I have just spent the last two days with literally a short in my brain. Unable to interact normally or function with others after one exhausting phone call regarding my status as a patient.
How someone, who is an experienced professional, could fuck this up so absolutely blows my mind. Congratulations for not keeping good notes at my one month update and for screwing this up. Anytime I attend medical appointments, I take someone else because I can't trust my brain to work or remember. I also rehearse the questions and concerns I have so that I can get answers. The person in question, first of all, had reviewed the wrong file. Yes I had a craniotomy, no it was not planned, no it was not minor. My husband reviewed my case for this person and then the light went on.
"Oh, you're that one."
"No, fuck." (I now wish I had said but my response was nicer and more appropriate.)
During the appointment this person was unable to answer many questions such as prognosis and time lines for recovery. She said she would review things with the doctor and call us with answers, I'm ok with that. She did review all my follow-up MRI's and explain them. She also, after being told by my husband that I had, in the past, been a medical massage therapist. She reviewed the surgery notes, which were awesome. In light of some of my conversations with the doctor it totally makes sense. (He even claimed initial responsibility for my profanity because he had done a lot of swearing when he found my tumor, which was fibrous type, wrapped around many of my facial nerves. He spent hours carving it away one piece at a time.)
During a call to the doctor office, speaking to medical records, I found that my notes were not reported correctly and that things not discussed were added to my file notes. Seriously! Are you really aware of the potential impact of your poor reporting? My hell, you could have fucked up my records. Thank God I called to get them sorted out and that I have notes that show what was really going on.
A surgeon of this level and magnitude needs better people supporting him. His PA is incredible but most people in his office, are awful.
"Hey, lets call and trust the craniotomy patient to know and answer all these questions because we couldn't keep our patients straight and complete notes correctly." What the hell, I'm not doing anything anyway.
We had a problem with our first interactions at this office in brief our previous issue is as follows:
At my follow-up one week after discharge from the hospital to get my staples removed, we met and were treated by a MA. After the staple removal, which was pretty easy, we asked to have my lungs checked. I was placed on medication to combat minor pneumonia in the hospital, they feared I had aspirated during surgery. We were told to have my lungs checked at the one week appointment, just in case. The medical assistant could not find a stethoscope to listen to my lungs and in a large office with many registered nurses and physicians assistants did not think to ask one of them for help. We had to call my primary care doctor and schedule an appointment 45 minutes away, to check that the pneumonia has gone. My doctor also placed me on some rather important medication to facilitate nerve regeneration, yup, the nurses had missed that one.
I am too sick and too tired to deal with this shit.
I have just spent the last two days with literally a short in my brain. Unable to interact normally or function with others after one exhausting phone call regarding my status as a patient.
How someone, who is an experienced professional, could fuck this up so absolutely blows my mind. Congratulations for not keeping good notes at my one month update and for screwing this up. Anytime I attend medical appointments, I take someone else because I can't trust my brain to work or remember. I also rehearse the questions and concerns I have so that I can get answers. The person in question, first of all, had reviewed the wrong file. Yes I had a craniotomy, no it was not planned, no it was not minor. My husband reviewed my case for this person and then the light went on.
"Oh, you're that one."
"No, fuck." (I now wish I had said but my response was nicer and more appropriate.)
During the appointment this person was unable to answer many questions such as prognosis and time lines for recovery. She said she would review things with the doctor and call us with answers, I'm ok with that. She did review all my follow-up MRI's and explain them. She also, after being told by my husband that I had, in the past, been a medical massage therapist. She reviewed the surgery notes, which were awesome. In light of some of my conversations with the doctor it totally makes sense. (He even claimed initial responsibility for my profanity because he had done a lot of swearing when he found my tumor, which was fibrous type, wrapped around many of my facial nerves. He spent hours carving it away one piece at a time.)
During a call to the doctor office, speaking to medical records, I found that my notes were not reported correctly and that things not discussed were added to my file notes. Seriously! Are you really aware of the potential impact of your poor reporting? My hell, you could have fucked up my records. Thank God I called to get them sorted out and that I have notes that show what was really going on.
A surgeon of this level and magnitude needs better people supporting him. His PA is incredible but most people in his office, are awful.
"Hey, lets call and trust the craniotomy patient to know and answer all these questions because we couldn't keep our patients straight and complete notes correctly." What the hell, I'm not doing anything anyway.
We had a problem with our first interactions at this office in brief our previous issue is as follows:
At my follow-up one week after discharge from the hospital to get my staples removed, we met and were treated by a MA. After the staple removal, which was pretty easy, we asked to have my lungs checked. I was placed on medication to combat minor pneumonia in the hospital, they feared I had aspirated during surgery. We were told to have my lungs checked at the one week appointment, just in case. The medical assistant could not find a stethoscope to listen to my lungs and in a large office with many registered nurses and physicians assistants did not think to ask one of them for help. We had to call my primary care doctor and schedule an appointment 45 minutes away, to check that the pneumonia has gone. My doctor also placed me on some rather important medication to facilitate nerve regeneration, yup, the nurses had missed that one.
I am too sick and too tired to deal with this shit.
This IS a Life of Miracles
Miracles do happen, we just have to be paying attention.
Sometimes I need a reminder of the miracles that I have experienced during this journey.
This whole thing came about because on Memorial Day of this year my in laws were in town and we planned a trip to Living Planet Aquarium in Salt Lake. I woke that morning feeling sick and I had a horrible headache (great, because I want to deal with the flu.) I refused to cancel and commented to my husband when it was suggested that "I won't have that many opportunities for things like this as the kids get older."
At the aquarium I took it easy. Walked slow, brought up the rear, you know went with the flow. We were home pretty early in the day and I went to rest.
The next day I had work but woke up with a horrible headache. At this point I knew something was really wrong. The pain was in constant flux; it would ebb and flow. I took a sick day from work and called to get in with my primary care provider, a wonderful internist who has been my doctor for years. During my appointment he diagnosed/suggested that it was encephalitis, swelling on the brain. He and an associate poked and prodded, tested reflexes, looked in my eyes, all that doctory stuff.
I was sent home with two prescriptions; if I had another driver with me they would have given me a shot and sent me home to sleep. I was also sent to have blood drawn, this showed an elevated white blood cell count indicating an infection. My mother in law came down from where she was staying in Salt Lake to stay with the boys. My husband worked to get two elders from our church to give me a blessing (thank you Janson and Scott.)
The blessing charged me to have faith, to be healed, and to be prepared to see the miracles that would occur as I faced the challenge ahead of me and my family. I commented to one of them as they were leaving that it was a pretty intense blessing for a simple infection but thank you for coming over.
Mom got here and I then went to bed and slept for 5 hours. I didn't stir, I didn't budge. My husband was home by then and told me not to worry, I looked like I needed it. He wanted to know the update from the doctor, they had given me a printout and instructions on what to watch for to ensure that meningitis did not develop.
The evening proceeded normally and we retired for the night. Around 2 AM my husband reports he woke up to find me lying in the bathtub, clothed. According to him I had fallen and was talking weird. For the next 30 minutes he asked me questions such as my name and the date. He then asked me why I fell in the tub. When I reported I did not remember falling into the tub he went into action. two of the three signs to watch for if meningitis was developing were blackouts and talking nonsense.
He called my cousin, who lives in the next town, to come and stay with our kids. He was rushing me to the ER. Less than 30 minutes later we were on our way.
By 6:30 that morning after many tests I was on my way to an MRI.
By 8:30 am we were rushing to UVMC for emergency surgery.
I had a craniotomy at 6:30 AM Thursday morning.
Many miracles led to saving my life as my tumor had just begun to cut off blood flow and CSF fluid to my brain. It had shifted and was sitting near the top of my brain stem on my primitive brain. The tumor was the size of a lemon and was interfering obviously with my life functions. Conversations post surgery with my surgeon he believes that, if not identified when it was, I would have died within a matter of weeks.
The concerns of meningitis and the medical visit the previous day caused the ER doctor to take more seriously our concerns and order a CT scan, that showed pressure and a large shady area in the brain.
Conferencing with the doctor who would be my brain surgeon, one of the best, occurred as he had just that day returned from vacation and was preparing for his week of surgeries. My surgeon met and admitted me through the second ER when we were transferred. It was also his recommendation to skip a spinal tap (thank you very much) because he was pretty certain an MRI would show a tumor.
Surgery occurred just 24 hours from the MRI that identified my lemon-sized meningioma. I was blessed with incredible and proficient medical care; my nurses were the best and my surgeon kept coming by to visit. He said he rarely gets to talk to patients with tumors the size of mine; they are usually unconscious by the time the tumor is found.
My elevated white blood cells worked to protect me in the hospital and helped my body and brain to recover post surgery, enabling me to return home in a timely manner.
More miracles have occurred since then and the support from my family, friends, and community have been heart warming. I can never express thanks enough for those caring for my loved ones, when I could not. These blessings continue to flow.
May God bless you on your journey.
Sometimes I need a reminder of the miracles that I have experienced during this journey.
This whole thing came about because on Memorial Day of this year my in laws were in town and we planned a trip to Living Planet Aquarium in Salt Lake. I woke that morning feeling sick and I had a horrible headache (great, because I want to deal with the flu.) I refused to cancel and commented to my husband when it was suggested that "I won't have that many opportunities for things like this as the kids get older."
At the aquarium I took it easy. Walked slow, brought up the rear, you know went with the flow. We were home pretty early in the day and I went to rest.
The next day I had work but woke up with a horrible headache. At this point I knew something was really wrong. The pain was in constant flux; it would ebb and flow. I took a sick day from work and called to get in with my primary care provider, a wonderful internist who has been my doctor for years. During my appointment he diagnosed/suggested that it was encephalitis, swelling on the brain. He and an associate poked and prodded, tested reflexes, looked in my eyes, all that doctory stuff.
I was sent home with two prescriptions; if I had another driver with me they would have given me a shot and sent me home to sleep. I was also sent to have blood drawn, this showed an elevated white blood cell count indicating an infection. My mother in law came down from where she was staying in Salt Lake to stay with the boys. My husband worked to get two elders from our church to give me a blessing (thank you Janson and Scott.)
The blessing charged me to have faith, to be healed, and to be prepared to see the miracles that would occur as I faced the challenge ahead of me and my family. I commented to one of them as they were leaving that it was a pretty intense blessing for a simple infection but thank you for coming over.
Mom got here and I then went to bed and slept for 5 hours. I didn't stir, I didn't budge. My husband was home by then and told me not to worry, I looked like I needed it. He wanted to know the update from the doctor, they had given me a printout and instructions on what to watch for to ensure that meningitis did not develop.
The evening proceeded normally and we retired for the night. Around 2 AM my husband reports he woke up to find me lying in the bathtub, clothed. According to him I had fallen and was talking weird. For the next 30 minutes he asked me questions such as my name and the date. He then asked me why I fell in the tub. When I reported I did not remember falling into the tub he went into action. two of the three signs to watch for if meningitis was developing were blackouts and talking nonsense.
He called my cousin, who lives in the next town, to come and stay with our kids. He was rushing me to the ER. Less than 30 minutes later we were on our way.
By 6:30 that morning after many tests I was on my way to an MRI.
By 8:30 am we were rushing to UVMC for emergency surgery.
I had a craniotomy at 6:30 AM Thursday morning.
Many miracles led to saving my life as my tumor had just begun to cut off blood flow and CSF fluid to my brain. It had shifted and was sitting near the top of my brain stem on my primitive brain. The tumor was the size of a lemon and was interfering obviously with my life functions. Conversations post surgery with my surgeon he believes that, if not identified when it was, I would have died within a matter of weeks.
The concerns of meningitis and the medical visit the previous day caused the ER doctor to take more seriously our concerns and order a CT scan, that showed pressure and a large shady area in the brain.
Conferencing with the doctor who would be my brain surgeon, one of the best, occurred as he had just that day returned from vacation and was preparing for his week of surgeries. My surgeon met and admitted me through the second ER when we were transferred. It was also his recommendation to skip a spinal tap (thank you very much) because he was pretty certain an MRI would show a tumor.
Surgery occurred just 24 hours from the MRI that identified my lemon-sized meningioma. I was blessed with incredible and proficient medical care; my nurses were the best and my surgeon kept coming by to visit. He said he rarely gets to talk to patients with tumors the size of mine; they are usually unconscious by the time the tumor is found.
My elevated white blood cells worked to protect me in the hospital and helped my body and brain to recover post surgery, enabling me to return home in a timely manner.
More miracles have occurred since then and the support from my family, friends, and community have been heart warming. I can never express thanks enough for those caring for my loved ones, when I could not. These blessings continue to flow.
May God bless you on your journey.
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