Broken

When I’m feeling broken and I get that feeling that I’m not sure if I can go on, I say this to myself over and over…. “The darkest night will end, and the sun will rise” – It will and it does. Kind of ironic coming from a person who thinks about death every day. Yes, I want to die. But I can’t. Dealing with chronic illness is horrible. I push and push until I can’t anymore. I have few friends and the few that I call my friends are incredible, but I’m still alone. I have a beautiful family, wonderful husband, 3 crazy kids… I’m in a full house of love, but I’m still alone. My life is consumed by pain. Pain is my number one priority. Pain is my enemy. Pain makes me want to give up. I want to die. But I can’t. Recently I had a friend who passed. We were not “bestie’s”, I didn’t know his deepest darkest secrets… But he was a good man. He was giving and loving. And way too young to die. The reason I’m telling you this is because 2 days after his funeral his girlfriend committed suicide. She was in so much pain, she felt it necessary to end her own life to be with him. I didn’t even know this woman, but I felt such pain. I felt broken. I cried for her, I cried for her family. I cried for myself, cause I have felt that need. I feel it Every day. So the crazy idea that I want to die…. The craziness that I think about it every single day…. Some may say I’m suicidal. Maybe I am. But I could never end my life. I couldn’t do that to my children, I couldn’t do that to my husband or the people that love me. No matter how much I hurt, no matter how sad I get…. I know I am loved and needed by someone. So I push and I push…. And another day passes. I would do anything to not be this way. To not have these thoughts. To not feel. But this is the hand I was dealt, not sure why but it’s mine. So I stay as strong as I can. Let the thoughts run their course and push through. Til tomorrow…

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Aside

Father’s Day Regret

Today is Father’s Day.
I lost my dad almost four months ago.

I thought about my father all day at work yesterday. I never understood what Father’s Day meant until today. As a child I remember making my dad cards, or drawing a picture, but we really didn’t celebrate the day. Same with Mother’s Day. It in all honesty was just another day to me. Even after all these years I never celebrated Father’s Day with him. I would post a Meme or a message on his Facebook page, I didn’t even have the decency to call him…. WoW…. great daughter. I now regret that. I should have made it special. I should have let him know what he meant to me.

I never did.

There are few pictures of us together. Mostly because we were both always taking the pictures. Though it still makes me sad. Still feel regret.

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The only picture of my dad and us girls.

I always thought there would be time. More time for pictures, more time for memories, more time for family. But there are no promises for tomorrow.

I need to not only celebrate the days, but also celebrate life. Not just of those that have past, but mostly for those that live.

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Mom, my sister Marianne, myself and my dad.

I miss my dad. I miss him a lot. I miss his quirky FB messages and his sarcastic comments. I miss his little jokes. I miss him tell me diving and hunting stories. I miss his noogie’s, the man enjoyed messing up others hair since he had none. As proof in the picture above. I miss that smile he had when someone was getting on his nerves. And that cheesy grin when he was up to no good.

I miss my dad.

My Wish

A month ago, I went back to work.
I went back to work because I had to. For my family. For myself.

Its bad.

I’m tired. I’m in pain. I’m grumpy.

But I continue to push. Pushing myself towards death. That’s what it feels like. Death.

I am pushing myself off the ledge.

But it’s still not enough. I’m not enough.

I wish….. I wish they could see how hard I’m working. On my feet 6-8 hours straight. Now most may laugh…. “only 6-8 hours”, well those hours are like 24 hours straight to me. You see I have arthritis in my spine, shoulder, feet and hands. I’m carrying plates, trays, glasses. I’m carrying the weight twice that others are, or that what my body feels like. I have to grip harder, hold tighter.
I wish….. I wish they could feel. Feel the stress, feel the pain.
I wish….. I wish they knew how it felt to drain your soul. To push yourself to the point of tears… and to keep on pushing till there is nothing left.

I’m torturing myself. I am my own terrorist.

I’m giving so much to my body, there is nothing left for my family. Everyone hates the other. There is no love in my house. My oldest has been babysitting for me. She hates it. She hates me, she hates her brother and sister. She hates her life.

I’m trying so hard.

I wish….. I wish I could give more. Be more. Do more.
I wish….. I wish I could stop letting others down. My family, my employers, my coworkers.
I wish….. I wish I had more to give.

You see, I have Celiac Disease. I work in a restaurant.  I am constantly around the demon that weakens me. Like Superman working at a Kryptonite warehouse. It takes everything I have. The contamination. The poisoning. The pain. But I keep on going… I have to.

I hate the feeling that it just ain’t enough. I’m not a good enough employee. I’m not a good enough mother. I’m not a good enough friend.
I need to do more, be more. I just can’t. I can’t do more.

I have been a stay at home mom for a long time. A decade. Honestly I wasn’t very good at it. I would do what I could on good days, but those bad days I never did enough. But I tried. I made sure my kids were clean, fed, safe and loved. Maybe the dishes weren’t done, and the dust was out of control, but I learned to get over that. I got up every morning to get the kids to school, did what I could do while they were gone and was there when they got off the bus. I helped them with homework. I made sure the necessary thing were done. Yes, there were days my children watched me crying from the pain. Yes, there were days I couldn’t get out of bed. I truly hate that my children have seen these days, but there is nothing I can do about that. I just hope it makes the stronger and more compassionate adults. I had time for theatre, one thing that made those bad days a little bit better. I wish I could explain what it feels like to be on stage. To be apart of something. To pretend to be someone else. To make people laugh… or cry. It’s my soul being to be on stage. If only I was as good at it as I am passionate about it. But I don’t have that this summer.

I wish….. I wish I was more.

You see, I have a blood disease. My body acts as though I have cancer, but I don’t. My immune system is shot. My WBC is high. My blood rejects protein and essential vitamins needed to live. My body don’t process…. anything. I am tired, all the time. I have chronic headaches. I awake with a headache, go to sleep with a headache. Everyday.

Because of all this my family suffers. Because of me.

I wish I could be healthy. I wish I could work full-time, take care of my family, keep my house clean, be active with theatre and still have time to have fun with friends. I wish I was like others. I wish I could but I can’t.

I wish I could give you more.

But I keep going…. keep giving it my all. Why? Cause I have to.

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Funny how my husband warned me that I couldn’t do it all…. he was right.

Saying goodbye to my dad….

On Friday, February 26th 2016, I lost my Dad. He was 59 years old.

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It’s been over a month. I’m still dealing with the fact that I will never see him again… My dad is gone.

My father was a auto mechanic by trade, but his love was the sea. He was a dive instructor (though he hadn’t taught in many years), he loved the water. His passion was wreck diving, he was a pirate on a search for treasure. He worked hard, and played harder. My father never stopped, always on the go. He also enjoyed hunting and fishing. My dad was a very gifted photographer of both land and sea.

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Photo by Bruce Sanders

                                                               Photo by Bruce Sanders

He loved his family. He loved his friends. He was a good man.

My father and I had a strange/hard/loving relationship. See he wasn’t my biological father, he fell in love with a single mom. The first memory I have of my dad was my fifth birthday party. My mom brought this stranger to my birthday, a month later they were married and I had a daddy. Not only did I have a dad, but now all of a sudden I went from being an only child to one of three girls. I inherited two little sisters. When I was younger he would take me hunting and fishing. He taught me to scuba dive. He was the first person to put a camera in my hand (a love I never let go and still have, yet never fully fulfilled). We had a good relationship, that is until I became a teenager. I was rebelious and basically out of control. He was short tempered. As an adult, I know he was just disappointed in me – he just wanted more from me. I get that now that I’m a parent.

The last twenty years have been different. We were friends. I could talk to him about anything. Becoming a grandfather softened the man I thought was so hard. He was always smiling.

My dad was a prankster. I love hearing stories from his friends of all the rotten, yet ingenious jokes my father would pull. I looked forward to his dive season videos and his photos. There will be no more Facebook videos…. No more jokes…. No more stories. No more silly pictures of him from my mom, or pictures of my Mom from him. No more memories.

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Photo by Bruce Sanders

I think about him everyday. I still cry everyday. Songs repeat in my head. Stories. Memories.

Shortly before his death my father accomplished one of his biggest dreams, he got his Captain’s license. He was so proud. We were all proud. As I said before, other than my mother, his love was the ocean.

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Photo by Bruce Sanders

For his funeral I chose the song “Come Sail Away” by Styx. I knew he loved that song as much as I did. I knew every word to that song, though the words didn’t hit me until I fully listened during his funeral…. It’s funny how a song that use to make you smile, now brings a flood of emotions.

I am grateful he chose me to be his daughter. He never gave up on me. He pushed me when he knew I needed it. I am who I am partly due to him, and I am grateful for every memory we made. In the words of Brad Paisley….. He didn’t have to be. He didn’t have to love me. But he did. I had 36 years with the man I call my dad. I’m grateful for every one of them.

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I love you dad. Always. I will see you soon.

Tired of living like I’m dying…

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So a week ago I decided it was time…. time to quit the narcotics. This isn’t the first time.

I hate pain killers. I have seen first hand what they can do to you, it’s not pretty. I have seen addiction, I have seen despair.
No. I am not addicted, my only addiction is nicotine. Which is another thing I will be trying to give up in just a few days. Not happy to do it, but it needs to be done.

I want my body, mind and soul back.

I hate the feeling of dependency. I have been on the pain killers for 2 years this time. I can’t do anything without them. Now mind you, they don’t take away the pain, I was only taking 20mgs a day of vicadin, they would allow just enough relief to get what I needed to get done… or what I could get done.

This week has been HELL! My body hurt from head to toe, I couldn’t stop shaking… the internal bone pain was so intense, I actually felt like I would be better off dead. My brain wasn’t working, my muscles were locked and my head felt like little mice were in there chipping away at my skull. It was excruciating. But I made it…. and I am not looking forward to next weeks nicotine withdrawal.

People close to me know what I’m going through. People like me understand the pain. Though most people around me, don’t get it at all. They don’t see me… they only “see” me. They see a petite, skinny woman. Most people “hate” me cause of my size. If they only understood how much I hate me too.

I’m going to share why I am the way I am. I don’t tell many people my personal health issues unless I trust them, but today I’m telling whomever will listen.

First, I have osteoarthritis (hands, feet, spine, and hips) and osteoporosis (40% bl). There are days, especially during winter and certain weather pressure that I can’t move, I can’t grip and I shake. This causes deep muscle spasms, and pain that only one whose experiences understands.

Second, I have a blood disease that causes me to not make enough red bloods cells or platelets. My white cells are always elevated, causing my immune system to shut down. Which is why I spend a lot of time in the hospital with pneumonia. My blood is thin and dark, strange combination. I have Von Willebrants disease, and auto immune disease. Honestly the doctor’s are still searching for answers, on why my blood changes so quickly. My body lives like I have cancer, though I don’t. It’s hard living safely when you’re a mom, I have to remember, one fall… one accident, could make me bleed to death.

Third, I have nerve damage, though the doctor’s say it’s fibromyalgia. Until there is a test that positively says I have something I don’t believe it….

And last but not least…. the freaking gut… celiac disease, IBS, and gastritis. My stomach hates me! I don’t eat gluten, acids or pork. I can’t gain weight. I try and try but I can’t.

So you see…. I’m a mess! I try so hard to live life positively, but there are days I have to be human. I have to live though. I have to mom, wife, friend, sister, daughter. I can’t lay still and allow myself to die. I wake up everyday praying that my body can heal itself… but how can it when I’m shoving one pill after the next in my mouth. You take one for this…. but you need this one to counteract that one, and these cause this, so now you have to take that. I’m plain sick of it. I’m tired of living like I’m dying!

So first…. goodbye pain pills. I can only do one at a time. Soon it will be goodbye nicotine… then anti-depressants… than stomach pills and last arthritis pills. How can I heal when all I am doing is suppressing it? So I’m going back to healing it naturally. I’m so tired of being tired, depressed and in constant pain. What kind of mother allows her children to see her like this (though I hide as much as I can). What kind of wife am I if I can’t allow my husband to hold me cause it hurts? What kind of friend am I when I stay locked up in my house so they don’t see the pain?

I’m tired of living like I’m dying! I’m taking my life back.
I need to be here, for as long as I have left, I need to be strong.

So those around me…. My family, my friends… bare with me please, I may not seem like myself for a little while, I’m learning to live again…. learning to live and push through the pain… and hopefully I’ll be back stronger than ever!