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.

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.