I'm learning a new art. Ice dying. Basically you bunch up the fabric, cover it in ice, sprinkle powdered dye over it and let the ice melt.
I used an old cream color flat sheet for my first attempt. After 12 hours the ice was melted, ad being curious I took a peek. I wasn't overly impressed, there was to much of the original color showing. So I bunched it back up with the bare patches on top, covered in ice, added dye, and left it alone.
I love how it looks.
unfortunately right now blogspot isn't letting me upload pics right now. I will keep working on it and hopefully it will let me eventually.
after a trip to the park yesterday with Lee we stopped at goodwill to look for a rack I can use in the dying(last time I used the oven rack). I found some fence stuff that will work great. I also went looking at sheets and blankets for me to practice on. I found a couple curtains and a baby blanket to try. I wanted different fabric types and I think these will be fun. One is lace, I'm not sure it will work real well, by I'm going to try.
Monday, September 5, 2016
Thursday, September 1, 2016
It's really not poison
Oh good God.
I left two pain pills out for Lee to take in case the kidney stones hurt him while in an at work.
I get home tonight, he's in bed. I go in to talk to him and he says "I didn't take that poison" . After several minutes of me asking him questions he finally says "those two poison pills you left me, you said they were poison so I didn't take them".
I just want to cry for him. I wish I could get through to him all the time. My heart breaks when he's like this because I can't help him, I can't fix him, I can't make him all better and as a nurse I should be able to.
But I can't fix this. I can't make him better. Instead I climb into bed next to him, after getting his bed time pills together and convincing him they aren't poison. I give him a kiss and I lay here silently crying as he drifts off to sleep and I listen to his slow, even breathing, my heart full of love, but breaking at the hopelessness I feel.
I am a caregiver. I am a wife. I am a nurse.
Thursday, August 25, 2016
Journey to Health, or why I torture myself
Let's talk gymlife for a minute.
For some people, including me, going to the gym isn't as simple as putting on workas out clothes, grabbing a bottle of water and walking in the building.
It's almost a ritual for me, a fine line balancing act, and I nearly have it down to a science.
I try to check my blood sugar about an hour before I go. If it's 175 our less I need to jack up my carbs. 30-45 minutes on the elliptical will drop me 100-150 pts, which would be dangerous if to low. I try to take a cup of vanilla Greek yogurt with fruit mixed in, and granola to sprinkle on top to work with me for a pre work out snack. I will drink a soda with it, if my sugar is to low. Sugary drinks will raise blood sugar fast, but will result in a fast crash also. Protein at the same time will balance that out a little and help to stabilize blood sugar(yogurt has decent protein).
Then I have to keep glucose tablets at hand, just in case I didn't estimate my sugar need high enough. I can't easily have them on me while working out, so I keep them in a locker, so then have a lock I need to try to remember the combo for as my brain is slowly shutting down. I often write the combo on my wrist so I can show someone if I need to ask for help.
Pain is the next issue. Sometimes walking from the car to the building is difficult, the elliptical would be impossible except for my pain meds.
I try to medicate about an hour before I go, so they will be at their peak. If everything is perfect at work it will work out. Sometimes its not and I can't even guess when I will be leaving. So I medicate just as I leave work. That means I sit in my rig and wait for the meds to kick in, burning precious sugar that I already jacked up. Even sitting you burn carbs from breathing and your heart beating, as well as your brain thinking. It's not much but when you try to keep your carb intake up just enough to handle the workout it can throw things out of whack.
Then you finally get in the building, lock your stuff up and head to the elliptical. Step up and start moving. And then you realize that it still hurts, badly. You try to push through it, knowing that though it hurts, it's not doing any damage. You end up stopping every 5 minutes or so, and after 20 minutes of that song and dance you just give up, especially since it really doesn't feel like much of a work out with all those stops.
Grab your stuff and head home, knowing now your blood sugar is to high and you will have to take insulin to counteract the carb loading.
The guilt hits later. You know you need the exercise and you really did try, but that effort that was all for nothing has now taken 2 hours out of an evening you could have spent with your husband. So you decide to take the next day off to spend with your partner and family, but feel guilty because you know you really need to work out. The circular thinking sucks.
Don't judge. That person going slow, stopping often, and quitting after just a few minutes may have a chronic condition that makes it difficult. They may want to do more, but it's physically impossible.
RSA
For some people, including me, going to the gym isn't as simple as putting on workas out clothes, grabbing a bottle of water and walking in the building.
It's almost a ritual for me, a fine line balancing act, and I nearly have it down to a science.
I try to check my blood sugar about an hour before I go. If it's 175 our less I need to jack up my carbs. 30-45 minutes on the elliptical will drop me 100-150 pts, which would be dangerous if to low. I try to take a cup of vanilla Greek yogurt with fruit mixed in, and granola to sprinkle on top to work with me for a pre work out snack. I will drink a soda with it, if my sugar is to low. Sugary drinks will raise blood sugar fast, but will result in a fast crash also. Protein at the same time will balance that out a little and help to stabilize blood sugar(yogurt has decent protein).
Then I have to keep glucose tablets at hand, just in case I didn't estimate my sugar need high enough. I can't easily have them on me while working out, so I keep them in a locker, so then have a lock I need to try to remember the combo for as my brain is slowly shutting down. I often write the combo on my wrist so I can show someone if I need to ask for help.
Pain is the next issue. Sometimes walking from the car to the building is difficult, the elliptical would be impossible except for my pain meds.
I try to medicate about an hour before I go, so they will be at their peak. If everything is perfect at work it will work out. Sometimes its not and I can't even guess when I will be leaving. So I medicate just as I leave work. That means I sit in my rig and wait for the meds to kick in, burning precious sugar that I already jacked up. Even sitting you burn carbs from breathing and your heart beating, as well as your brain thinking. It's not much but when you try to keep your carb intake up just enough to handle the workout it can throw things out of whack.
Then you finally get in the building, lock your stuff up and head to the elliptical. Step up and start moving. And then you realize that it still hurts, badly. You try to push through it, knowing that though it hurts, it's not doing any damage. You end up stopping every 5 minutes or so, and after 20 minutes of that song and dance you just give up, especially since it really doesn't feel like much of a work out with all those stops.
Grab your stuff and head home, knowing now your blood sugar is to high and you will have to take insulin to counteract the carb loading.
The guilt hits later. You know you need the exercise and you really did try, but that effort that was all for nothing has now taken 2 hours out of an evening you could have spent with your husband. So you decide to take the next day off to spend with your partner and family, but feel guilty because you know you really need to work out. The circular thinking sucks.
Don't judge. That person going slow, stopping often, and quitting after just a few minutes may have a chronic condition that makes it difficult. They may want to do more, but it's physically impossible.
RSA
Monday, August 22, 2016
Life With A Terminal Disease-or how we wait for death
Today a friend and her husband have been married 23 years.
I love seeing things like that. It used to make my heart ache every time I saw something like that. While happy for my friends and family, it still made me realize how short my ever after really will be. Life with terminal diseases sucks, but at the same time is a blessing.
I know my forever after won't be as long as yours, my parents, my grandparents, and at the worst moments I ask myself "is this it, has my ever after ended today"? Will there be another day for us? Will he remember who I am tomorrow?(there have been recent days that no, he doesn't know me).
I just take it day by day, and I try to make the most out of every minute we will have together.
I was talking with my mom this morning about something I want to do, but know I can't until Lee is gone. Mom said "well that won't be for another 10-15 years". Reality is, lewy body dementia prognosis is 5-7 years. The Parkinson's disease and leukemia are an issue, and there's a timer running out on those also. I take it Month to month, day to day, hour to hour, minute to minute, second to second, and count myself as lucky. We know it will end sooner rather than later. We can plan for it, I can plan for my future without him, and we can let ourselves live like today is our last day together.
I encourage everyone to live that way. Its not sick or morbid, its living for now instead of tomorrow because you never know what tomorrow will bring. Live, love, laugh, and make the most out of today.
I love seeing things like that. It used to make my heart ache every time I saw something like that. While happy for my friends and family, it still made me realize how short my ever after really will be. Life with terminal diseases sucks, but at the same time is a blessing.
I know my forever after won't be as long as yours, my parents, my grandparents, and at the worst moments I ask myself "is this it, has my ever after ended today"? Will there be another day for us? Will he remember who I am tomorrow?(there have been recent days that no, he doesn't know me).
I just take it day by day, and I try to make the most out of every minute we will have together.
I was talking with my mom this morning about something I want to do, but know I can't until Lee is gone. Mom said "well that won't be for another 10-15 years". Reality is, lewy body dementia prognosis is 5-7 years. The Parkinson's disease and leukemia are an issue, and there's a timer running out on those also. I take it Month to month, day to day, hour to hour, minute to minute, second to second, and count myself as lucky. We know it will end sooner rather than later. We can plan for it, I can plan for my future without him, and we can let ourselves live like today is our last day together.
I encourage everyone to live that way. Its not sick or morbid, its living for now instead of tomorrow because you never know what tomorrow will bring. Live, love, laugh, and make the most out of today.
Wednesday, August 3, 2016
The night I tried to kill my husband, or, why i had to talk with poison control
I have hesitated to share this story, but I need to so others are aware.
You will see this number mentioned several times. Write it down please.
1-800-222-1222.
Keep the number of poison control handy. They have a medication nurse on staff and they can help regarding medications and overdoses, as well as poisons.
My husband is an old man(71) and has parkinsons(with a little dementia) and leukemia. I get his meds ready for him, every night I set up his bedtime and meds for the next morning, and do mine at the same time. I set mine down, place his morning ones down next to the coffee maker, turn and give him
his bedtime ones.
That night, July 30, 2016, I set up his meds, set them down, set up my meds, turned around and gave him mine to take, and he swallowed them just as I realized my mistake and said STOP.
Before you say something like that can never happen to me... I'm a nurse. An RN. I was also exhausted from work and being his caregiver, and planning a little vacation we were taking the next day.
He received 2 narcotics, a muscle relaxant, and a med for nerve pain, all of those can cause drowsiness and dizziness.
I never thought I would ever in a million lifetimes make this kind of mistake. I was torn up big time.
Poison control isn't just for chemicals/poisons/kid incidents. I called the VA nurses help line first. She kept me on the line while she called poison control 1-800-222-1222.. She didn't disconnect until I was talking to the medication nurse.
Even with their reassurances he would be ok, I was still a mess, still fighting tears, and barely holding off a panic attack.
The poison control nurse called me back 3 hours later to check on him, and me, and had given me her direct line if I needed to call before that, even if it was just to be reassured. When you call poison control it automatically routes to the closest regional center. 1-800-222-1222.
Always know what meds everyone in the household is on, keep a list on the fridge. They will ask when they took them, what meds they took, dosage, and what, if anything, they normally take.
I have all meds in a 3 drawer plastic shelf thing. One has his meds, one has mine, and one has all the back up stuff and my diabetes supplies. I didn't have a list on hand, but because I have them organized like that I was able to go right to the drawer and look at each bottle to tell her what they were. On a normal day I can name off each of our meds, dose, and when it's normally taken. In my panic I couldn't remember anything. I still kept a cool head, despite how I felt inside, but it wasn't enough. I couldn't think of the names, let alone dosage or times.
1) keep the number of poison control handy. Hang it by the phone. Program it into your cell. Write it on the fridge with a sharpie. 1-800-222-1222.
2) keep a list of medication names, dosage, and time it's normally taken.
3) keep all meds separate(many look nearly identical) and in a locked box if you have tiny minions around.
4) never hesitate to call/ask someone for help, you may not have the mindset to call 911 or poison control. 1-800-222-1222.
We are VERY fortunate nothing bad happened with this. I know we had luck and God on our side, it could have turned out so horribly different, I could have killed my husband accidentally. I am thankful nothing more than him sleeping 14 hours came from it.
I am not ready to lose him.
You will see this number mentioned several times. Write it down please.
1-800-222-1222.
Keep the number of poison control handy. They have a medication nurse on staff and they can help regarding medications and overdoses, as well as poisons.
My husband is an old man(71) and has parkinsons(with a little dementia) and leukemia. I get his meds ready for him, every night I set up his bedtime and meds for the next morning, and do mine at the same time. I set mine down, place his morning ones down next to the coffee maker, turn and give him
his bedtime ones.
That night, July 30, 2016, I set up his meds, set them down, set up my meds, turned around and gave him mine to take, and he swallowed them just as I realized my mistake and said STOP.
Before you say something like that can never happen to me... I'm a nurse. An RN. I was also exhausted from work and being his caregiver, and planning a little vacation we were taking the next day.
He received 2 narcotics, a muscle relaxant, and a med for nerve pain, all of those can cause drowsiness and dizziness.
I never thought I would ever in a million lifetimes make this kind of mistake. I was torn up big time.
Poison control isn't just for chemicals/poisons/kid incidents. I called the VA nurses help line first. She kept me on the line while she called poison control 1-800-222-1222.. She didn't disconnect until I was talking to the medication nurse.
Even with their reassurances he would be ok, I was still a mess, still fighting tears, and barely holding off a panic attack.
The poison control nurse called me back 3 hours later to check on him, and me, and had given me her direct line if I needed to call before that, even if it was just to be reassured. When you call poison control it automatically routes to the closest regional center. 1-800-222-1222.
Always know what meds everyone in the household is on, keep a list on the fridge. They will ask when they took them, what meds they took, dosage, and what, if anything, they normally take.
I have all meds in a 3 drawer plastic shelf thing. One has his meds, one has mine, and one has all the back up stuff and my diabetes supplies. I didn't have a list on hand, but because I have them organized like that I was able to go right to the drawer and look at each bottle to tell her what they were. On a normal day I can name off each of our meds, dose, and when it's normally taken. In my panic I couldn't remember anything. I still kept a cool head, despite how I felt inside, but it wasn't enough. I couldn't think of the names, let alone dosage or times.
1) keep the number of poison control handy. Hang it by the phone. Program it into your cell. Write it on the fridge with a sharpie. 1-800-222-1222.
2) keep a list of medication names, dosage, and time it's normally taken.
3) keep all meds separate(many look nearly identical) and in a locked box if you have tiny minions around.
4) never hesitate to call/ask someone for help, you may not have the mindset to call 911 or poison control. 1-800-222-1222.
We are VERY fortunate nothing bad happened with this. I know we had luck and God on our side, it could have turned out so horribly different, I could have killed my husband accidentally. I am thankful nothing more than him sleeping 14 hours came from it.
I am not ready to lose him.
Wednesday, June 22, 2016
Thank you patients
I'm a nurse and though I've had many nurses I've worked with and loved that I respected and looked up to, it's the kids I cared for when I did pediatric home care that made the biggest impact on me.
The babies that weren't supposed to live, but are now 6, 12, 22 yrs old. The trust they gave me to keep them alive with an ambu bag for hours when a vent malfunctioned, the look in their eyes when I walked in to parents doing what they could while their child turned gray in front of them, the panic on their faces, in her eyes, as they tried to remain calm while an ambulance was called, all the while fighting not to show their child their fear that she was dying.
The child slowly dying from an incurable brain tumor I sat with all night so his parents could get some much needed sleep, trusting me to keep him out of pain.
The mom who didn't speak English who sent me home after 2 hours night after night because she trusted no one to care for her son except her, to gain her trust and become part of their family, celebrating holy days, birthdays, American holidays, and mourning with them when bad news was received from home
The young man who at 18 gained the strength to tell his parents no more, that he was done with hospitals and doctors, and that he was ready to accept the consequences of his decision, knowing he would die.
The preschooler I watched, and helped, wean off the vent, and meds, and said good bye to as she was now healthy enough she no longer needed nursing care, and I learned Viagra has many uses, even in 2 year old girls.
The baby we were told was blind and deaf, that couldn't sit unassisted or roll over at a year old...to see her now running, playing, eating, smiling at her favorite video and signing more over and over when it ended.
Each child, each family, each family member made an impact on me. Each one lives in my heart. Each one stole a piece of my heart. Each one I loved and cared for like they were my own.
Patients often don't realize the impact they have on their nurses. They don't realize how much they teach us. Christian, your family, have touched many lives, each of them better for it.
For us it's not a matter of "what did I learn from my nurse" it's more "what did my patient teach me today"60
The mom who didn't speak English who sent me home after 2 hours night after night because she trusted no one to care for her son except her, to gain her trust and become part of their family, celebrating holy days, birthdays, American holidays, and mourning with them when bad news was received from home.
The young man who at 18 gained the strength to tell his parents no more, that he was done with hospitals and doctors, and that he was ready to accept the consequences of his decision, knowing he would die.
The preschooler I watched, and helped wean off the vent, and meds, and said good bye to as she was now healthy enough she no longer needed nursing care.
The baby we were told was blind and deaf, that couldn't sit unassisted or roll over at a year old...to see her now running, playing, eating, smiling at her favorite video and signing more over and over when it ended.
Each child, each family, each family member made an impact on me. Each one lives in my heart. Each one stole a piece of my heart. Each one I loved and cared for like they were my own.
Patients often don't realize the impact they have on their nurses. They don't realize how much they teach us.
The babies that weren't supposed to live, but are now 6, 12, 22 yrs old. The trust they gave me to keep them alive with an ambu bag for hours when a vent malfunctioned, the look in their eyes when I walked in to parents doing what they could while their child turned gray in front of them, the panic on their faces, in her eyes, as they tried to remain calm while an ambulance was called, all the while fighting not to show their child their fear that she was dying.
The child slowly dying from an incurable brain tumor I sat with all night so his parents could get some much needed sleep, trusting me to keep him out of pain.
The mom who didn't speak English who sent me home after 2 hours night after night because she trusted no one to care for her son except her, to gain her trust and become part of their family, celebrating holy days, birthdays, American holidays, and mourning with them when bad news was received from home
The young man who at 18 gained the strength to tell his parents no more, that he was done with hospitals and doctors, and that he was ready to accept the consequences of his decision, knowing he would die.
The preschooler I watched, and helped, wean off the vent, and meds, and said good bye to as she was now healthy enough she no longer needed nursing care, and I learned Viagra has many uses, even in 2 year old girls.
The baby we were told was blind and deaf, that couldn't sit unassisted or roll over at a year old...to see her now running, playing, eating, smiling at her favorite video and signing more over and over when it ended.
Each child, each family, each family member made an impact on me. Each one lives in my heart. Each one stole a piece of my heart. Each one I loved and cared for like they were my own.
Patients often don't realize the impact they have on their nurses. They don't realize how much they teach us. Christian, your family, have touched many lives, each of them better for it.
For us it's not a matter of "what did I learn from my nurse" it's more "what did my patient teach me today"60
The mom who didn't speak English who sent me home after 2 hours night after night because she trusted no one to care for her son except her, to gain her trust and become part of their family, celebrating holy days, birthdays, American holidays, and mourning with them when bad news was received from home.
The young man who at 18 gained the strength to tell his parents no more, that he was done with hospitals and doctors, and that he was ready to accept the consequences of his decision, knowing he would die.
The preschooler I watched, and helped wean off the vent, and meds, and said good bye to as she was now healthy enough she no longer needed nursing care.
The baby we were told was blind and deaf, that couldn't sit unassisted or roll over at a year old...to see her now running, playing, eating, smiling at her favorite video and signing more over and over when it ended.
Each child, each family, each family member made an impact on me. Each one lives in my heart. Each one stole a piece of my heart. Each one I loved and cared for like they were my own.
Patients often don't realize the impact they have on their nurses. They don't realize how much they teach us.
Sunday, June 19, 2016
Life as a caregiver
I got a message the other day that really made me smile, and cry. It warmed my heart. I really needed to hear it after a really bad day.
I want to talk about being a caregiver to a spouse that's terminally ill.
It's hard. It sucks. Its even worse when you have to work full time also.
There's no other way to put it.
We don't do it for the praise, we know our spouse appreciates it, we know how they feel.
We sure as hell don't do it for money, there is no pay.
We don't do it to make ourselves feel better, its physically and mentally exhausting.
We do it out of love.
We do it out of compassion.
We do it because our heart says to.
We don't do it to impress people, there are days we go unshowered, teeth not brushed, hair pulled back in a ponytail because we were so busy getting our partner ready for an appointment we forgot to brush our hair.
I often get asked "how do you do it?"
There is no answer to that really. It's hard as all get out sometimes. It's not easy some days.
It's day in and day out, sleepless nights, tears in the shower worried about the one we love.
Its worrying about forgetting appointments, or being late because our spouse is having a bad day.
Its trying to focus just on our partners needs, physical and mental and not worrying about what others think, family or friends.
It's worrying that the next fall will result in bad injury, someone calling adult protective services, or even death.
Its worrying about sleeping through that fall and our partner laying there in pain, calling out to you but you are so exhausted you don't wake up.
It's guilt when you forget one their pills, or forget to take them with you when you get brave enough to take them on an all day outing.
It's love.
I want to talk about being a caregiver to a spouse that's terminally ill.
It's hard. It sucks. Its even worse when you have to work full time also.
There's no other way to put it.
We don't do it for the praise, we know our spouse appreciates it, we know how they feel.
We sure as hell don't do it for money, there is no pay.
We don't do it to make ourselves feel better, its physically and mentally exhausting.
We do it out of love.
We do it out of compassion.
We do it because our heart says to.
We don't do it to impress people, there are days we go unshowered, teeth not brushed, hair pulled back in a ponytail because we were so busy getting our partner ready for an appointment we forgot to brush our hair.
I often get asked "how do you do it?"
There is no answer to that really. It's hard as all get out sometimes. It's not easy some days.
It's day in and day out, sleepless nights, tears in the shower worried about the one we love.
Its worrying about forgetting appointments, or being late because our spouse is having a bad day.
Its trying to focus just on our partners needs, physical and mental and not worrying about what others think, family or friends.
It's worrying that the next fall will result in bad injury, someone calling adult protective services, or even death.
Its worrying about sleeping through that fall and our partner laying there in pain, calling out to you but you are so exhausted you don't wake up.
It's guilt when you forget one their pills, or forget to take them with you when you get brave enough to take them on an all day outing.
It's love.
Tuesday, June 14, 2016
We don't do dogs
I used to work at a nursing home. We had a resident who's dying wish was to have his dog cremated and their ashes mixed. So GH died. T was an old dog and had a lot of health problems so none of us had an issue with his wish. We made the arrangements well before G died. The day came and I stopped to pick T's ashes up on my way to work. Get to work and called the funeral home, as arranged with the director weeks before.
I sit down and call... "hello, I'm calling to arrange pick up of GH's dog T."
Funeral home1(FH)- " Ma'am, we don't do dogs"
Me-"yes, I understand that but we made these arrangements weeks ago and we were told to call after the dog was cremated"
FH-"yes, well, there are places that dispose of animal remains, if you call the shelter they can direct you to one"
Me-"thank you, but can I speak to your supervisor"
FH-"yes ma'am but they will also tell you we don't do dogs."(then transfers me)
FH2- "hello ma'am, I understand you have a dog for us to pick up"
Me-"yes, he's ready to be picked up, you already have his owner GH"
H2-"but ma'am, we don't do dogs"
Me-"I understand you don't do dogs, the dog is already done, he just needs picked up, can I please talk to your supervisor"
FH2-"yes, but they will tell you the same thing"(transfers me again)
FH3- "good evening, I understand there is some confusion regarding animal remains, we don't do dogs but if you call this number..."
Me-(very short and irritated by this point) explains again and tells him to call the director the arrangements were made with.
FH3- agrees to call director who isn't on call that weekend but will have him call me.
FH4(director)-" I'm sorry for the confusion, apparently the message didn't get passed to the weekend on call, we will send someone out within the hour"
Me- thanks him and hangs up to wait for the pick up.
Almost exactly one hour later... In walks a dude looking at an index card, pushing a gurney with a body bag on top...stops by the desk.
Him -"I'm here to pick up T Hambert*"
Me-stands up picks, the box up, walks around the nurses station, sets the box on top of the body bag on the gurney "here is Mr. Hamberts* dog T"
Him-"but ma'am, we don't do dogs"
Me-(as I'm sitting to start paperwork) "well today you do do dogs, have a nice night"
(He called the funeral home who had been notified of the irregular situation by this time, and was advised to return with the dogs remains immediately so they could get the dog done)
*name changed
Wednesday, April 6, 2016
Strong for Life, Or how do you do what you do
I often get told I am one strong woman. I don't see myself as such. Here is my response to that statement.
Strong... Depends on the day :) I have many days I close myself in the bathroom and cry and feel sorry for myself and my life, then put on a happy face and go back to life. I'm in a facebook group for spousal caregivers and it's been a lifesaver. I can say things there I can't elsewhere for fear that people will think I'm a horrible person or say negative things about it when I just need to vent. I can talk about anything, kids, hubby, me.... Someone there has been there done that thought that. I think half my friends would drop me fast if I said something like how much easier it would have been if he had never woken from the coma 2 1/2 years ago, half of the rest would say things along the lines of how can you think something like that. The remaining 25% would vary between texting, messaging or calling to ask what's up and why are you thinking that, and saying I understand, what can I do to help.
Usually those feelings happen when I have to cancel something I'm looking forward to because he needs me. I married him knowing he had parkinsons (triggered by surgery to repair a brain aneurysm), and a probable stroke during the surgery(he had underlying parkinsons, the brain trauma kicked it into high gear).
I'm an RN and I know better than most what will happen with the parkinsons, that only makes it easier from a clinical standpoint, not as a wife. They discovered the leukemia after we were married. It wouldn't have changed the outcome, I still would have married him.
The kid...she's a lot easier to face, mental illness is a lifelong illness. It could get worse at any time, and I am thankful she's as stable as she is. When she was a teen it was harder emotionally for me. All the what ifs, how will she be able to do anything, live her dreams, what will happen if something happens to me, will she have to live at home forever (I wouldn't mind, but it would mean that she's not likely living her dream of becoming a marine biologist). Its also not a terminal disease and new medications and treatments come out fairly often and are much better at managing the disease. For her there is hope and always will be. She is currently unmedicated by her choice. She's managing it with learned techniques, She's outspoken about mental illness and doesn't hide it, so all her friends and professors know.
It's life, you do what you have to. You fall down, you have a tantrum, you pick yourself up and step back up to the plate for the next inning.
Life goes on.
Life in and of itself is a terminal disease.
Life has a way of going on.
You find the small victories and hold to them tightly, because when there are setbacks you need a victory to remind of the good in life.
Strong... Depends on the day :) I have many days I close myself in the bathroom and cry and feel sorry for myself and my life, then put on a happy face and go back to life. I'm in a facebook group for spousal caregivers and it's been a lifesaver. I can say things there I can't elsewhere for fear that people will think I'm a horrible person or say negative things about it when I just need to vent. I can talk about anything, kids, hubby, me.... Someone there has been there done that thought that. I think half my friends would drop me fast if I said something like how much easier it would have been if he had never woken from the coma 2 1/2 years ago, half of the rest would say things along the lines of how can you think something like that. The remaining 25% would vary between texting, messaging or calling to ask what's up and why are you thinking that, and saying I understand, what can I do to help.
Usually those feelings happen when I have to cancel something I'm looking forward to because he needs me. I married him knowing he had parkinsons (triggered by surgery to repair a brain aneurysm), and a probable stroke during the surgery(he had underlying parkinsons, the brain trauma kicked it into high gear).
I'm an RN and I know better than most what will happen with the parkinsons, that only makes it easier from a clinical standpoint, not as a wife. They discovered the leukemia after we were married. It wouldn't have changed the outcome, I still would have married him.
The kid...she's a lot easier to face, mental illness is a lifelong illness. It could get worse at any time, and I am thankful she's as stable as she is. When she was a teen it was harder emotionally for me. All the what ifs, how will she be able to do anything, live her dreams, what will happen if something happens to me, will she have to live at home forever (I wouldn't mind, but it would mean that she's not likely living her dream of becoming a marine biologist). Its also not a terminal disease and new medications and treatments come out fairly often and are much better at managing the disease. For her there is hope and always will be. She is currently unmedicated by her choice. She's managing it with learned techniques, She's outspoken about mental illness and doesn't hide it, so all her friends and professors know.
It's life, you do what you have to. You fall down, you have a tantrum, you pick yourself up and step back up to the plate for the next inning.
Life goes on.
Life in and of itself is a terminal disease.
Life has a way of going on.
You find the small victories and hold to them tightly, because when there are setbacks you need a victory to remind of the good in life.
Monday, April 4, 2016
I'm often asked how I can function, how I am able to work while taking pain medication. It sucks. It really does. I don't get high, I don't get that euphoria addicts speak of. I don't get high. I get relief. I get decreased pain. I'm never pain free, but with it being decreased i am able to still function.
Don't be mistaken, after years taking narcotics your body does have some sort of dependency, but it's different than an addicts dependency. When my meds wear off, if I'm not in bad pain, I don't take them. I only take them when I hurt. Sometimes that means I have symptoms of opiod withdrawal. They aren't pleasant, but they wont kill me. I yawn, horribly and almost nonstop. My nose runs, my eyes water, and I look like I have severe allergies or a cold. That's the start of withdrawals. I tolerate it, because I have the mindset that if I take them when I don't need them for what they were prescribed for, I'm an addict.
Don't be mistaken, after years taking narcotics your body does have some sort of dependency, but it's different than an addicts dependency. When my meds wear off, if I'm not in bad pain, I don't take them. I only take them when I hurt. Sometimes that means I have symptoms of opiod withdrawal. They aren't pleasant, but they wont kill me. I yawn, horribly and almost nonstop. My nose runs, my eyes water, and I look like I have severe allergies or a cold. That's the start of withdrawals. I tolerate it, because I have the mindset that if I take them when I don't need them for what they were prescribed for, I'm an addict.
Wednesday, March 23, 2016
The Ugly Side of Me
Once upon a time I had dreams. I had aspirations. I knew what I wanted with life.
Real life got in the way.
I became a single mom.
I did what I had to.
I went to school. I became a nurse. I grew up and learned how to support my family. I didn't always do things the best, but we made it through everything.
I got married. I love this man with all my heart, by this isn't the life i pictured or wanted.
I work a low paying job(for my career), but the benefits are good,the hours are good, and if I'm needed at home I have the ability to do that.
I hate being a nurse. I didn't want to be a nurse, yet certain people, when I try to talk about my feelings, will turn things around and say "you always wanted to be a nurse as a kid". Reality is that no I didn't. A woman important to me is a nurse. I wanted to be like her. It wasn't me though. I had bigger dreams and aspirations. I was afraid to be me, to say what I wanted to be, I was always pushed in the direction others saw for me. I always had the need, the drive, to be what others wanted for me. I regret it.
I'm not me. I'm a nurse, a mom, a wife. I regret the first. They second filled my life with love and hope and taught me so much, how to love others at the most basic, the most complete level. The third I am madly in love with, despite the complications of life. He completes me at the deepest level. He is the reason I needed to be a nurse. I needed to do it for him, despite not knowing him until 9 years ago. It's what he needed, and now I have the skills to care for him, to discuss things with his doctors and therapists at a clinical level with emotional detachment.
As a child I REALLY wanted to be a marine biologist. My oldest child now carries that dream, and I hope and pray she doesn't give it up.
My real dream, now that I'm a grown up is research. I'm still not 100% certain, but that's not bad. I want to be a microbiologist with a minor in virology. I also want to study neurobiology, but I think majority of that is because of Lee. I dream of finding a real, legit, honest to God it works cure for Parkinsons disease.
My dream is dead. I wont ever do any of that. I can't get financial aide, and I certainly can't afford to pay for a doctorate level education, or even a Masters, let alone a bachelors. And if I could...I still would have to work full time. We couldn't live without me working. How could i fit school, work, caring for Lee in and have time to study? I don't have a time turner.
I really doubt anyone would support a gofundme for a 41 year old burnt out woman.
So my dreams are now dead.
I have to live the rest of my life knowing I really did fail at me.
Real life got in the way.
I became a single mom.
I did what I had to.
I went to school. I became a nurse. I grew up and learned how to support my family. I didn't always do things the best, but we made it through everything.
I got married. I love this man with all my heart, by this isn't the life i pictured or wanted.
I work a low paying job(for my career), but the benefits are good,the hours are good, and if I'm needed at home I have the ability to do that.
I hate being a nurse. I didn't want to be a nurse, yet certain people, when I try to talk about my feelings, will turn things around and say "you always wanted to be a nurse as a kid". Reality is that no I didn't. A woman important to me is a nurse. I wanted to be like her. It wasn't me though. I had bigger dreams and aspirations. I was afraid to be me, to say what I wanted to be, I was always pushed in the direction others saw for me. I always had the need, the drive, to be what others wanted for me. I regret it.
I'm not me. I'm a nurse, a mom, a wife. I regret the first. They second filled my life with love and hope and taught me so much, how to love others at the most basic, the most complete level. The third I am madly in love with, despite the complications of life. He completes me at the deepest level. He is the reason I needed to be a nurse. I needed to do it for him, despite not knowing him until 9 years ago. It's what he needed, and now I have the skills to care for him, to discuss things with his doctors and therapists at a clinical level with emotional detachment.
As a child I REALLY wanted to be a marine biologist. My oldest child now carries that dream, and I hope and pray she doesn't give it up.
My real dream, now that I'm a grown up is research. I'm still not 100% certain, but that's not bad. I want to be a microbiologist with a minor in virology. I also want to study neurobiology, but I think majority of that is because of Lee. I dream of finding a real, legit, honest to God it works cure for Parkinsons disease.
My dream is dead. I wont ever do any of that. I can't get financial aide, and I certainly can't afford to pay for a doctorate level education, or even a Masters, let alone a bachelors. And if I could...I still would have to work full time. We couldn't live without me working. How could i fit school, work, caring for Lee in and have time to study? I don't have a time turner.
I really doubt anyone would support a gofundme for a 41 year old burnt out woman.
So my dreams are now dead.
I have to live the rest of my life knowing I really did fail at me.
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