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.

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.

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.

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.

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.

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.