Tuesday, December 11, 2018

A Year in the Life

Here we are with another year coming to an end. As each year begins I think to myself this will be my year and things will be better. December 31, 2017 I said it again, as I did the year before that, and the year before that. This year turned out to be one of the worst as far as health and even more taking care of my parents. My dad's Lewy Body Dementia became quite bad as the year progressed. We had to move him to assisted living hoping that was going to take some of the stress off of us, especially my mom, as his sundowners was becoming worse. But our experience turned out to be quite the opposite of what we had envisioned. The facility he went to didn't seem to have experience with Lewy Body behaviors which in turned made it rough on my mother and I. Phone calls when they didn't know what to do with him, unnecessary visits to the ER, and his behaviors becoming much worse. In the end we had to call hospice to start palliative care which turned out to be a blessing for all three of us. It was the first time in three years we started to feel more relaxed about the steps we were taking in his care plan. I hate to say it but was a blessing that he passed but it was. Those who have never experienced a situations such as ours may think it is cold and uncaring. Quite the opposite. My dad would have died if he knew what his behaviors were like in the end. Stupid disease is all I can say. His whole life he helped and cared for people and would never hurt anyone. He became a police officer to do just that. The stories he would tell me about helping people were dear to my heart. All the abused women and children he would get help for and check up on them, the homeless people he would personally take to Mel Trotter for the night because they were drunk or laying on the streets in the cold. He could have been a jerk and left them on the side of the road but his heart was too big. The kids he found in a house when he went to arrest the parents and the kids were in two big holes in the couch and said that was where they slept with the mice. He scooped them up so fast and got them out of there. I know that one really affected him. The teenagers he would pull over while they were drinking and having fun and if they weren't to drunk he would take their booze dump it out and let them go. Mind you that was a different age and time so you must take that into consideration, he just remembered he was a kid at one time too. Oh the stories I have of his goodness. You hear of all the bad stuff cops do and I don't disagree there are some dirty ones but for every bad one there is more than likely many more good ones. Believe it.

I didn't intend for this blog about illness to go on and on about my dad I actually came here to write about a year in the life of chronic illness. There are so many illnesses I could write down for this year but it might make your head spin right right off. The tip of the iceberg. I was back on prednisone this week for my RA knee pain and it got me reflecting over this past year. I absolutely hate to admit it but according to my head count I have been on prednisone either eight or nine times in 2018 and we still have a few weeks to go. Yikes and yes you read that right all you anti steroid medication takers out there. It seemed like I would conquer one issue and another would pop up. It was either sinus issues, bronchitis, knee/joint pain, or my asthma all on a consistant rotation basis. I even had two doctors make unnecessary comments. One being, "You don't look sick." (sinus infection) The other, "We are going to be calling you a frequent flyer soon." (bronchitis) Seriously? It's like you go in shock when you hear this stuff. Do they really think people could make this stuff up? I don't get it at all. Needless to say if you can avoid urgent care and see your own doctors office doctors do it. Lesson learned.
This year my asthma has not played well at all. My lung function was down 14% last time I had my breathing test so my pulmonologist added another inhaler on top of the ones I already use regularly. I am happy to finally have that under control and am back on my regular treatment plan. Hope this doesn't jinx me writing that. Having infections non stop is not good for asthma breathing issues, it all seems to be connected. The only thing that helps through a flare of asthma is prednisone and believe me when you can't get air in your lungs you will take anything they give you to be able to breathe.. I have been very agitated and anxiety has crept in this year. I know my dad was a lot and contributed to my health problems this year. I didn't take care of myself at all. It was go, go, go at 100% speed not only physically but mentally. After my dad died I really hit rock bottom. I've never dealt with depression but if this was it I had it. My last bought of bronchitis started October 1st. I was back to the doctor two times after that for a total of three rounds of antibiotics. I finally feel like things are coming around. When I went back I talked to her about the anxiety and depression and started a low dose antidepressant. I am finally feeling more like my happy self. I think. It still seems up and down but definitely more good days than bad. I still feel like I'm on a roller coaster trying to figure out my life again but I will get there. Reflecting back is good it helps you make sense of things but I've also learned you can't stay there forever. Rich helps me with this. Looking back helps you look forward. I continue to tell myself things will be better in 2019 because I truly believe they will. Once again it all goes back to that one little four letter word. HOPE. I made it through somehow, someway. Giving up is never an option. Going through the hard times makes us appreciate the good times more. Realizing how good I have it even in the bad, even on my worst days, gives me hope for a brighter tomorrow. I hope you can find that too in your journey.

God Bless!

Dianne




Friday, June 8, 2018

Who's to Blame

Human nature sure likes to trick our minds into thinking everything that happens to us has to have a reason or an answer. Think about it, everything that happens to us that we don't like or agree with instantly puts us into the mode of blame. It has to be someone or something's fault. Life should be good and always happy according to our standards.

Last night was a rough night for me as far as pain goes. I started wearing my fitbit during the day to push myself to walk more and to stay more active. Keep moving according to doctors which is so easy for them to say. I'm doing it. A few nights ago I decided to start wearing it to bed to see my sleep patterns and map out in my head if they are as bad as I think they are on the nights I toss and turn in pain. Last night it said I was awake and restless a total of thirty seven minutes. When I looked at it this morning I thought to myself that isn't so bad but when I think back on the night I feel like I want to yell at the fitbit and tell it something is wrong with those readings because I was awake a lot more than that. After all I have to blame someone so why not the fitbit, stupid thing anyway. I pulled myself back together and realized sleep deprivations makes me cranky.

I had Mya overnight for a few nights and after I dropped her off I heard a song from quite a few years back by Sara Evans called A Little Bit Stronger. Like most songs it's about heartache and a break up I listened to the distant words and each one came back as I tried to sing with my scratchy crap voice that has withered away over the years. I thought to myself this could apply to being sick everyday of your life.


A Little Bit Stronger

Woke up late today, and I still feel the sting of the pain.
But I brushed my teeth anyway, got dressed through the mess and put a smile on my face.
I got a little bit stronger.
Riding in the car to work, and I'm trying to ignore the hurt.
So I turned on the radio, Stupid song made me think of you,
I listened to it for minute, but then I changed it.
I'm getting a little bit stronger, just a little bit stronger.
And I'm done hoping that we can work it out,
I'm done with how it feels, spinning my wheels
Letting you drag my heart around.
And ohhh
I'm done thinking, that you could ever change.
I know my heart will never be the same,
But I'm telling myself I'll be okay.
Even on my weakest days, I get a little bit stronger.
Doesn't happen over night, but you turn around and a months gone by,
And you realize you haven't cried.
I'm not giving you a hour or a second or another minute longer.
I'm busy getting stronger.
And I'm done hoping that we can work it out,
I'm done with how it feels, spinning my wheels
Letting you drag my heart around.
And ohhh
I'm done thinking, that you could ever change.
I know my heart will never be the same,
But I'm telling myself I'll be okay.
Even on my weakest days, I get a little bit stronger.
Getting along without you baby,
I'm better off without you baby,
How does it feel with out me baby?
I'm getting stronger without you baby.
And I'm done hoping that we can work it out,
I'm done with how it feels, spinning my wheels
Letting you drag my heart around.
And ohhh
I'm done thinking, that you could ever change.
I know my heart will never be the same,
But I'm telling myself I'll be okay,
Even on my weakest days, I get a little bit stronger.
A little bit, a little bit, a little bit stronger.

I get a little bit stronger everyday, every year. I use to blame everything and everyone. I'd get mad when I saw happy people my age able to do whatever they wanted physically. It seemed so unfair as I hardly had energy to go out to dinner with Rich. I use to let that mind game hell consume me, but not anymore. Now I get up and say bring it on bitch. I've gone from crying to Rich about how unfair this is to not caring much, even after a night like last night. If I can'd do something I can't do it, after so many years it becomes your life.The guilt of holding Rich back in life begging him to divorce me so he could have the life he deserves with someone else. When I think back on that and even writing it now it makes me laugh. That's how I know I've come such a long way. If the tables were turned there would be no way in hell I'd leave him if he was the sick one. I've grown that's for sure. I've learned to take the good with the bad, just as everyone else does with their crap.
I have to believe tonight's sleep will be much better than last nights.Its no ones fault. Its the disease. Disease hates us and for some reason wants to devour us. It's still hard but changing my attitude has helped me so much. Doing more things that I love or just sitting and doing nothing but binging on Netflix. Working hard on taking the negative out and putting some positive in. It's not always easy. It's like a full time job in it self but like I always say I will win over this disease today and forever.
Disclaimer: This is today who knows how I feel tomorrow...the story continues. Hang on my friends and keep up the good fight and if you have to blame something or someone, go for it. Just don't let the blame last for too long.

God Bless!

Dianne