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.
Wednesday, March 23, 2016
Thursday, December 31, 2015
Life, Death, and how to decide.
Lee told me today he hates taking all these pills and he wants to talk to the doctor about stopping some of them.
I took out each of his pills and told him what each one is for. I also told him that if he does stop the leukemia medication he would probably die within a few months, and as much as I really do love him and want him around I would support his decision.
We discussed the parkinsons, and he understands that one really is only helping the tremor be not so bad, and he knows its not a cure and it will get worse eventually. He knows that carbidopa/levodopa doesn't even slow the progression of parkinsons, it just makes it easier to live with the symptoms. He may decide to stop it, I won't make that decision for him.
The Prozac helps with his anger control, supposedly, I know that the dementia is affecting his moods more and more and Prozac isn't likely doing much.
The rest he's on... Pantaprazole( think that's it) for reflux, vitamin D, Iron(the leukemia causes anemia, his iron was pretty bad) a multivitamin, seroquel(because the iron doesn't play well with sinimet so he can't take that at bedtime he's on the seroquel to knock him out despite the tremors trying to keep him awake), and hydrocodone(he generally only takes one in the morning when he wakes up, that's when the arthritis in his lower back is the worst), but he can take it up to 4 times a day, tamsulosin for an enlarged prostate,i Gleevec for the CML, and Claritin or zyrtec for year round allergies.
It looks like a lot in his pill box but I know realistically it's not that much.
I am very realistic in the outcome, I know he will die sooner rather than later. I know his meds aren't cures and his diseases are terminal. He knows that also. I've never kept the truth from him or downplayed the situation at all. He would make the decision knowing the outcome, and I would be ok with whatever decision he makes. We have actually discussed assisted suicide and he knows there is that option(he's catholic so he has said from the start that's not an option). He and I both don't see stopping his meds as suicide, we see it as allowing nature to take its course.
As much as I love my husband I can't fix him. I wish I could wrap my arms around him a
or wave a magic wand and cure him. I can't though, and I am most certainly aware that he is dying and I will lose my knight in shining armor. I will take every minute I am given though, and cherish every bit of it. Of he does decide to stop the medications we will then discuss hospice.
I have known for many years that my happily ever after won't be forever after.
I took out each of his pills and told him what each one is for. I also told him that if he does stop the leukemia medication he would probably die within a few months, and as much as I really do love him and want him around I would support his decision.
We discussed the parkinsons, and he understands that one really is only helping the tremor be not so bad, and he knows its not a cure and it will get worse eventually. He knows that carbidopa/levodopa doesn't even slow the progression of parkinsons, it just makes it easier to live with the symptoms. He may decide to stop it, I won't make that decision for him.
The Prozac helps with his anger control, supposedly, I know that the dementia is affecting his moods more and more and Prozac isn't likely doing much.
The rest he's on... Pantaprazole( think that's it) for reflux, vitamin D, Iron(the leukemia causes anemia, his iron was pretty bad) a multivitamin, seroquel(because the iron doesn't play well with sinimet so he can't take that at bedtime he's on the seroquel to knock him out despite the tremors trying to keep him awake), and hydrocodone(he generally only takes one in the morning when he wakes up, that's when the arthritis in his lower back is the worst), but he can take it up to 4 times a day, tamsulosin for an enlarged prostate,i Gleevec for the CML, and Claritin or zyrtec for year round allergies.
It looks like a lot in his pill box but I know realistically it's not that much.
I am very realistic in the outcome, I know he will die sooner rather than later. I know his meds aren't cures and his diseases are terminal. He knows that also. I've never kept the truth from him or downplayed the situation at all. He would make the decision knowing the outcome, and I would be ok with whatever decision he makes. We have actually discussed assisted suicide and he knows there is that option(he's catholic so he has said from the start that's not an option). He and I both don't see stopping his meds as suicide, we see it as allowing nature to take its course.
As much as I love my husband I can't fix him. I wish I could wrap my arms around him a
or wave a magic wand and cure him. I can't though, and I am most certainly aware that he is dying and I will lose my knight in shining armor. I will take every minute I am given though, and cherish every bit of it. Of he does decide to stop the medications we will then discuss hospice.
I have known for many years that my happily ever after won't be forever after.
Wednesday, December 9, 2015
Respect comes in all shapes and sizes
Life takes us on adventures. Some we plan, some we fall into, some that find us.
Last month an adventure found us. Six days with no power. A wind storm with gusts of 71 mph slaughtered trees that had been standing for hundreds of years. It took out power lines, busted cement, broke open roofs, and took a couple lives.
We were very fortunate and we were prepared. We always have enough food on hand to last us a couple of months.
We have some stored water , not enough for anything long term, but we have a couple filters on hand. We are still seriously under prepared for anything real long term.
we are prepared for a minor to moderate urban disaster, to shelter in place.
That's not what I want to discuss though. My mantra, "life will go on", has again shown us the meaning of life. That meaning of life comes in the form of two very sweet young adults who, despite it all, got married.
The world spins, day changes to night, summer to fall. It has never failed us, but our own hearts have been known to fail us. How do we prevent that from happening?
Respect. Respect for us, our partner, our children, our time.
I have learned that if I let respect for my spouse start to slide my heart starts to harden. When I let myself feel something he did was only done to irritate me my words start to bite.
When I start to get mad at his disease it reflects onto him as a person and makes him feel he is the disease.
When he asks for my time I have to remind myself he doesn't ask for much, and he's not doing it out of a lack of respect for me and my free time, he's doing it because he loves me and wants to spend time with me. I need to prioritize my plans and remember what lifes priorities are now, terminal diseases change the entire game plan.
Last month an adventure found us. Six days with no power. A wind storm with gusts of 71 mph slaughtered trees that had been standing for hundreds of years. It took out power lines, busted cement, broke open roofs, and took a couple lives.
We were very fortunate and we were prepared. We always have enough food on hand to last us a couple of months.
We have some stored water , not enough for anything long term, but we have a couple filters on hand. We are still seriously under prepared for anything real long term.
we are prepared for a minor to moderate urban disaster, to shelter in place.
That's not what I want to discuss though. My mantra, "life will go on", has again shown us the meaning of life. That meaning of life comes in the form of two very sweet young adults who, despite it all, got married.
The world spins, day changes to night, summer to fall. It has never failed us, but our own hearts have been known to fail us. How do we prevent that from happening?
Respect. Respect for us, our partner, our children, our time.
I have learned that if I let respect for my spouse start to slide my heart starts to harden. When I let myself feel something he did was only done to irritate me my words start to bite.
When I start to get mad at his disease it reflects onto him as a person and makes him feel he is the disease.
When he asks for my time I have to remind myself he doesn't ask for much, and he's not doing it out of a lack of respect for me and my free time, he's doing it because he loves me and wants to spend time with me. I need to prioritize my plans and remember what lifes priorities are now, terminal diseases change the entire game plan.
Tuesday, December 1, 2015
The many faces of Parkinson's disease
You can see the progression in pictures. They aren't in any order except the first one, that's a couple years before Parkinson's began taking him away.
My cynical life
I hate doctors. Each time I take Lee to one they point out something I should have seen. Something that shows a progression of the Parkinsons. I live with him. I'm with him every day. I see what's happening. Yet I don't really see it.
It took a doctor today, a urologist at that, to point out how Lee is standing up from a chair. How he is leaning far forward, which is a high risk for a fall. He's already a high fall risk, and knock on wood... It's been a couple months since he has fallen.
I hate that I have to work, I wish I could stay home with him. If I could then we could have our own place. But he can't be alone 9+ hours a day, so we live with my parents.
I am really in need of a little vacation. Bekah and I want to plan a no plan drive east vacation. Just get in the car and drive until we get where we are going, which is to say... Nowhere. No plans, just pack and go.
I'm now realizing I probably won't be able to do that. We talked about trying to reserve the fire look out again and just me and her going. I don't know if that will happen either.
Parkinson's sucks. Bad.
It took a doctor today, a urologist at that, to point out how Lee is standing up from a chair. How he is leaning far forward, which is a high risk for a fall. He's already a high fall risk, and knock on wood... It's been a couple months since he has fallen.
I hate that I have to work, I wish I could stay home with him. If I could then we could have our own place. But he can't be alone 9+ hours a day, so we live with my parents.
I am really in need of a little vacation. Bekah and I want to plan a no plan drive east vacation. Just get in the car and drive until we get where we are going, which is to say... Nowhere. No plans, just pack and go.
I'm now realizing I probably won't be able to do that. We talked about trying to reserve the fire look out again and just me and her going. I don't know if that will happen either.
Parkinson's sucks. Bad.
Wednesday, November 25, 2015
Bad vacations can be good to
- The picture in my profile, this one, shows the man I met and fell in love with. We were happy, both of us relatively healthy. We camped, we hiked, had a wonder filled trip to California that was the most stressful, craziest, amazing trip ever. It was the trip to hell that began with a broken down RV, car rental places not open on a Saturday, finding a hotel to accommodate us and a 36 ft RV, and a $300 two block tow to the shop. It was a trip of family bonding, sitting in lawn chair for 12 hrs while AAA tried to find a big enough tow truck, counting how many times the same police car drove by and never stopped until the tow truck was there. It was a terrifying brief separation as the second tow truck AAA called just to take me and the kids to a hotel, the wrong one, and A $20 tip to convince the hotel driver to take us to the right hotel, meeting a father and son who were there for boat races and invited us to join their team so we wouldn't have to pay entry fees, and discovering a child had lice.
It was a trip to the Winchester mansion, a walking tour narrated.
It was a trip to a park, sitting in a class about dolphins before my kids donned wetsuits to climb in a pool full of dolphins. Watching them grab the dolphins fun to be pulled around the pool.
It was amazing.
It was our last big family trip, and only one.
The man I married can't do those things anymore. He can't walk through a store anymore. He needs a cane to go from bed to bathroom, when he is able, when not he slides out of bed to kneel on the floor and use a urinal.
Despite it all that was the best trip ever, it was before Parkinsons, before leukemia, before bankruptcy, before all that stole our life.
I don't regret any of it. I cherish every bit of those memories and the trip from hell. I have them to remind me of when things were good.
He would like to go on a cruise. I won't be able to take him on one. I want to stand in Times square and kiss him as the ball drops on New Years eve. I want to take him to Yellowstone. Parkinson's won't let us.
I want to take him away, somewhere we can forget disease, doctors, medication.
I took him to the fair.
Thursday, October 1, 2015
The state of Life and things to be
8 years ago I met my soul mate. Our first date we sat in a coffee shop for 3 hours, until they closed and kicked us out. We knew from the start we were meant to be.
After three years of dating we decided to move in together and life was wonderful.
November 2010 that changed forever. He woke up at 4 am to use the restroom, got dizzy, fell, hit his head on the wall and passed out. He had a cold and he thought it was just from the congestion. I don't know the order of things, he may have passed out then hit his head, things happened and he doesn't remember it all. Being a nurse I kept an eye on him and when he was up and functioning I took him to urgent care. They did a CT scan and told us there was "something", probably an artifact, but we needed to follow up with his GP. At the GP they did an MRI and promptly sent us to a neurosurgeon. They had discovered a berry aneurysm. The aneurysm was sitting on his optic nerve and he was losing vision in that eye.
We made the decision to have it repaired and not risk it rupturing. That was the worst decision we made.
In Feb 2011 he went into a 12 hour surgery. They were unable to repair the aneurysm but were able to move it off the optic nerve so he was a candidate for a coiling procedure.
He spent almost a week on the neurology floor. They had PT, OT, and ST working with him. He was unable to walk. After 6 days they sent him home in a wheelchair with a cane. He fell the next day trying to walk. Back to the hospital, he bent the titanium plate in his skull, but was fine they told me.
Over the next few days he got worse and worse. He started hallucinating badly. I took him back to the ER and fought with the doctor. He saw nothing wrong. Every time he was in the room Lee was ok, oriented kind of. Then a nurse was in there when he started in again. He convinced the doctor Lee needed to stay and that it was not a psych issue but it was a medical issue. They figured out he was having a reaction to the steroids they gave him to prevent brain swelling. He was there another week and came home stable.
Months of therapy and he was then able to use just a cane 100% of the time.
I need to back up a little and talk about the tremors. He has an essential tremor. They aren't a big deal and don't cause death. He's had it 30+ years and his daughter also has it.
After his surgery, during a follow up his surgeon said the magic words "have you ever been checked for Parkinson's disease(PD)". Off to another doc, on to a new diagnosis and medication.
Life went on and we decided to get married. On July 24 2011 I married the man of my heart. Despite the complications life had thrown us we were very much in love. He is 29 years older than me, a Vietnam vet, but when we met he was much younger. I never would have thought he was his age if I had just met him on the street. Before the aneurysm we traveled, camped and hiked. We were active and lived life. PD changed that, slowly but surely.
Fall comes, it's almost a year since they discovered the aneurysm. Lee goes in for a routine physical.
It ended up not so routine.
It ended up a journey of more lab tests, more doctors, New words added to our medical vocabulary like bone marrow biopsy, chronic myelogenous leukemia(CML), and a doctor telling us it's incurable, but slow progressing. "Something else is likely to kill him before the leukemia".
I can live with that. I have him for a long time still right?
2013 November. I am at work and my parents call me. I hear words I don't want to. We are at the VA ER with your husband and they doctor said you need to get here immediately.
I got there within 30 mins. He was having severe dyskinesia and was very confused. They did labs, scans and I don't remember what else, but we weren't there long when they told us an ambulance is on its way and they are taking him to sacred heart for a direct admit to the ICU. He was in acute renal failure, metabolic acidosis and his white count was very high. When he got to the hospital he was unresponsive except to painful stimuli.
They kept him in icu only one night before moving him to the Neuro floor. During that time he was still unresponsive except for a grimace to painful stimuli, never woke up, never talked to me. After a week they sent a palliative care doctor to speak with me. His daughter was there and we discussed it with his son and the rest of his family, even those not local, despite them being far they are family and mean a lot to my husband. With their consent I made the very hard decision to place him on hospice care. 30 mins later I left, his daughter stayed with him. I had been gone 30 mins when I got a call "Jen, dad's awake and wants to talk to you".
He was fine. Weak but fine.
He spent another week in for therapy. We left with a diagnosis of Lewy body dementia, as well as the acute renal failure and acidosis.
We have had another incident similar to that, not near as serious though.
He keeps getting weaker and more confused.
I don't believe it's Lewy body dementia and neither does his PT. It's something we will address at his next Neuro appointment.
This first pic was early in our dating years. We were at the lake and had been boating and tubing. It was awesome and one of my favorite memories of us that I'm sharing with you.
After three years of dating we decided to move in together and life was wonderful.
November 2010 that changed forever. He woke up at 4 am to use the restroom, got dizzy, fell, hit his head on the wall and passed out. He had a cold and he thought it was just from the congestion. I don't know the order of things, he may have passed out then hit his head, things happened and he doesn't remember it all. Being a nurse I kept an eye on him and when he was up and functioning I took him to urgent care. They did a CT scan and told us there was "something", probably an artifact, but we needed to follow up with his GP. At the GP they did an MRI and promptly sent us to a neurosurgeon. They had discovered a berry aneurysm. The aneurysm was sitting on his optic nerve and he was losing vision in that eye.
We made the decision to have it repaired and not risk it rupturing. That was the worst decision we made.
In Feb 2011 he went into a 12 hour surgery. They were unable to repair the aneurysm but were able to move it off the optic nerve so he was a candidate for a coiling procedure.
He spent almost a week on the neurology floor. They had PT, OT, and ST working with him. He was unable to walk. After 6 days they sent him home in a wheelchair with a cane. He fell the next day trying to walk. Back to the hospital, he bent the titanium plate in his skull, but was fine they told me.
Over the next few days he got worse and worse. He started hallucinating badly. I took him back to the ER and fought with the doctor. He saw nothing wrong. Every time he was in the room Lee was ok, oriented kind of. Then a nurse was in there when he started in again. He convinced the doctor Lee needed to stay and that it was not a psych issue but it was a medical issue. They figured out he was having a reaction to the steroids they gave him to prevent brain swelling. He was there another week and came home stable.
Months of therapy and he was then able to use just a cane 100% of the time.
I need to back up a little and talk about the tremors. He has an essential tremor. They aren't a big deal and don't cause death. He's had it 30+ years and his daughter also has it.
After his surgery, during a follow up his surgeon said the magic words "have you ever been checked for Parkinson's disease(PD)". Off to another doc, on to a new diagnosis and medication.
Life went on and we decided to get married. On July 24 2011 I married the man of my heart. Despite the complications life had thrown us we were very much in love. He is 29 years older than me, a Vietnam vet, but when we met he was much younger. I never would have thought he was his age if I had just met him on the street. Before the aneurysm we traveled, camped and hiked. We were active and lived life. PD changed that, slowly but surely.
Fall comes, it's almost a year since they discovered the aneurysm. Lee goes in for a routine physical.
It ended up not so routine.
It ended up a journey of more lab tests, more doctors, New words added to our medical vocabulary like bone marrow biopsy, chronic myelogenous leukemia(CML), and a doctor telling us it's incurable, but slow progressing. "Something else is likely to kill him before the leukemia".
I can live with that. I have him for a long time still right?
2013 November. I am at work and my parents call me. I hear words I don't want to. We are at the VA ER with your husband and they doctor said you need to get here immediately.
I got there within 30 mins. He was having severe dyskinesia and was very confused. They did labs, scans and I don't remember what else, but we weren't there long when they told us an ambulance is on its way and they are taking him to sacred heart for a direct admit to the ICU. He was in acute renal failure, metabolic acidosis and his white count was very high. When he got to the hospital he was unresponsive except to painful stimuli.
They kept him in icu only one night before moving him to the Neuro floor. During that time he was still unresponsive except for a grimace to painful stimuli, never woke up, never talked to me. After a week they sent a palliative care doctor to speak with me. His daughter was there and we discussed it with his son and the rest of his family, even those not local, despite them being far they are family and mean a lot to my husband. With their consent I made the very hard decision to place him on hospice care. 30 mins later I left, his daughter stayed with him. I had been gone 30 mins when I got a call "Jen, dad's awake and wants to talk to you".
He was fine. Weak but fine.
He spent another week in for therapy. We left with a diagnosis of Lewy body dementia, as well as the acute renal failure and acidosis.
We have had another incident similar to that, not near as serious though.
He keeps getting weaker and more confused.
I don't believe it's Lewy body dementia and neither does his PT. It's something we will address at his next Neuro appointment.
This first pic was early in our dating years. We were at the lake and had been boating and tubing. It was awesome and one of my favorite memories of us that I'm sharing with you.
This next one was last month.
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