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Ode to my father

This is a story about my dad.  He has Alzheimer’s.  But he is much more than that.

When I was little my parents got divorced and I lived with my mother and my brother lived with my dad mostly.  I always idolized my dad.  Probably because I didn’t live with him, but he could do no wrong.  I got to stay with him every other weekend and on those weekends he spoiled the hell out of me. He would pick me up and would always have a plastic cup with gin and tonic in it. I remember watching it  to see if it would spill. It would sit on the console and make it through every turn.  I rode in the backseat and would alternate between laying upside down in the seat with my feet in the back window and flipping people off on the freeway.  He never got mad at me. I remember being 8 and him handing me a 100 dollar bill and me walking the 10 city blocks to the 7-11 to buy jolly ranchers and Archie comics. We would go to the grocery store and he would have me push the cart and he’d say “ok, put whatever you want in it’.  I would fill the cart with chocolate cookies and ice cream and grapes.  I have many grocery memories as it was the same each time I saw him. He’d let me eat cereal for dinner.  He’d say bachelor living taught him to cook but he really didn’t like to. He made the best spaghetti sauce I’ve ever tasted. He attributed it to growing up in an Italian neighborhood. Told me that his father was friend’s with the Marciano’s and often had dinner together. Back then neighborhood’s were so segregated. He was so tall to me.  And his sideburns were awesome.  Big  70′s sideburns.  My dad was born with really curly hair that he hated.  I would watch him blow dry it out straight before anyone ever knew you could do that.  He would primp in the mirror while I sat on the floor watching him.  He had giant cans of Aqua Net and would shellack his head so nothing would blow around.  He always smelled like Old Spice and Aqua Net.  Whenever I couldn’t sleep I would climb into bed with him and beg him to change pillows with me.  His pillow smelled like him and it put me to sleep.  He would lay facing away from me with his arm over his back so I could rub his thumbnail.  It had ridges and it was soothing to me.  I cherished every moment with him.  He was the coolest person I had ever known.

My dad came from a big Irish Catholic family, just as my mom did.  I always wondered if they only had me and my brother because of that.  His family was poor.  Sometimes when he drank too much he would give me tid bits of information from his childhood, but mostly he said he didn’t want to talk about it.  I wanted to know everything.  Him not wanting to tell me had me asking everyone about it.  My aunt, one of  his sisters, would tell me anything I wanted to know.  Then she would say, don’t tell your father.  So I had many secrets that I carried.  Looking back, what a burden to put on a child, but I think she was trying to please me and she thought I should know about my family history.

As a child my dad wanted to go to be an alter boy.  When they told him he was too young, he memorized Masses in Latin and went up to the Sister’s and would recited them.  My aunt said they all freaked out and would parade him around while recited prayers and psalms in Latin.  He was 5.  He had 7 brothers and sisters and was the second to the youngest child.  His sisters told me when he was born he was blonde and had violet eyes. Said he was the most beautiful baby anyone had ever seen. When my son was born, his eyes were that violet blue.

His father was a gambler and wasn’t home much.  Apparently he was big in the Irish community and had an ego that was large without ever working. People called him names like Boss, and Mayor.  My dad fought for his dad’s attention. He told him and his brother that they would wake up to a new bike if they went through this box of old butts and  rolled them into cigarettes.  My aunt said when they woke up and there was no bike, his brother cried while my dad called him a fucker. His father did things like this to them all the time. I was told that my dad had the mind of a genius, and learned later in life that he was in a way.  He did all the math in his head and I would check it on a calculator. He was always right.  My son is the same way.

His mother would get up at 4 am to start cooking and cleaning and sewing.  My dad idolized his mother.  And learned through life experience that he hated his father, but wanted him just the same.  One of his older sisters was in charge of the younger kids, and she would tell me stories of them coming home from school and her having him take off his socks and wash them and hang them up for the next day.  She said he’d bitch about it and her sister would smack the shit out of him.  He’d wait until she was asleep and then blow this old bugle and she would chase him out of the house and around the yard until she caught him, and then she would hit him over the head with it.  She said he never cried, he just got even.  She told me out of all of the kids, my dad was the smartest and the one who got into the most trouble.  When he was a young teen he and his friends would wait outside the pubs and would roll drunks.  They cut school and would race cars in the woods and drink. My father dropped out of high school his senior year before graduation.  He left because he didn’t have any clothes without holes to graduate in and his sisters said he was embarrassed.  Each kid in the family left when they could, and my dad joined the army young.  He couldn’t reach the weight requirement so the recruiter told him to go across the street to the market and eat bananas and come back.  He ate as many bananas as he could.  He would do anything to get in. He made weight barely and joined the Army. He rebelled against Army life and got into trouble all the time.  He fought getting his haircut, and said that he won.  I used to look through his Army pics for hours, he was so handsome he looked like a movie star to me with a cigarette hanging out of his mouth and a sneer.  His mouth got him into trouble with his superiors and they stationed him in Austria as some kind of punishment. Then we had the Korean war.  He said being a smartass punk saved his life.

After the Army my dad raced cars.  I have a picture of his car wrecked and upside down after he flew through the windshield and broke his nose.  It had a shamrock painted on the side and said Luck O the Irish.  I remember looking at that photo as a child and thinking, he’s got the worst luck ever. And I am Irish Too!!  I imagined all kinds of terrible things happening to me throughout my life as kids do when they daydream.

My dad built my mom their first home.  He was a carpenter/tiler/jack of all trades.  He worked and went to night school.  When I was a year and half old we moved to the west coast.  They left their families behind to start a new life on this coast.  My dad’s oldest sister lived in the LA area. She was the only one to leave the east coast before us.  So we moved in with them until my parents got their own place.  I have early childhood memories of a rooster that lived next door to us attacking me and pecking the shit out of me every time I went outside and riding a horse down the street.  Very random memories.

There did come a time when I realized my dad was just a human being like everyone else.  I was 18 and at my cousin’s wedding.  At the after party after the reception (yah, the Irish do party) she decided to tell me all kinds of stories about my father.  I guess she thought I was a grown up because I was of age and had a child.  But I remember sitting on a pillow on her living room floor with a smile that I new I had to keep on, and in my mind I was crying.  He IS human after all.  I wanted to adore him forever. I didn’t want to know of anything that he had done that would tarnish his superpowers in my eyes.  But, then I knew.  He is just a man. A man who is my father.

Throughout the years my dad has been my biggest champion.  We had more than our fair share of fights. As I became a woman he wanted me to stay a child I think. He didn’t want to let me go.  Yet, no matter what kind of situation I got myself into, and there were many, he was always there. And he would always hug me and tell me, I love you tuke, no matter what.  Our relationship actually got closer as I moved farther away from him.  I didn’t think I could do it, but I surprised myself and picked up and left state.  I talked to him every night on the phone and he assured me I did the right thing by leaving my old life behind.  Said we all need to do that sometimes.  Before I left he wanted me to follow in his footsteps and be a businesswoman phenom.  But all I wanted to do was be a nurse.  He told me I was better than that.  He didn’t understand I didn’t care about money.  I wanted to help people.  He kept threatening to buy companies and have me run them.  Told me I better get my business degree. He’d always say, you can do anything. If you don’t know anything about it, bullshit them and then learn and keep going up and up.  That’s exactly what he did.  He is a high school dropout who bullshited his way in and made it to the top. He fooled them all, but he earned it because he learned and made it. It was a time in our relationship where all we did was yell at each other.  He is a stubborn man and he taught me well.  I’d tell him I learned from the best and would throw his arms up because he knew I was right.  I was so much like him, it infuriated him.

When we first found out he had Alzheimer’s he wouldn’t accept it. He would not take the medicine and he lived with me.  I would beg him, yell at him, plead with him.  No.  He refused to accept it.  It was a an awful time for everyone.  I couldn’t accept that he had it either. But it became apparent.  I had to be the parent.  I had such a hard time letting go of the image of my big strong dad, and realize once again that he is just human, like me.  And he needed me.  I took care of him daily for about 4 months and I finally ended up getting on my knees and crying, begging him to please take the medicine.  He just stared at me with vacant eyes.  I knew then that I was losing him. But this disease, takes you so slowly and painfully.  It is taking the essence of who he is, and replacing it with random bits and pieces amplified.  It’s like it takes the worst parts of you in your soul, and blows them up.

A couple of years ago after a dementia episode he came over and sat on my couch and cried.  I cried too before he even spoke.  I wish I could just pull this awful disease out of his brain, and that he doesn’t have to suffer with his thoughts anymore.  He told me that day, he said things were happening in his mind but he was still in there and he could see it all like an outsider and it scared the shit out of him and we cried.  I was so angry with him.  I didn’t tell him that but his stubbornness might have accelerated the illness because it took so long for him to start taking the meds that might have slowed it down.

All of this and so much more is in my thoughts all the time now.  He came over for dinner with me the other night and we had such a good time talking.  About an hour into it I realized that he didn’t know I was his daughter. He started telling me stories about me and I just nodded and smiled.  I used to try and get him to know who I was until I realized that’s probably not good for him.  After my son walked him back across the street I got into bed and cried.  It was so good to be with him, I miss him so much.  But when I’m with him I miss him even more.  My husband came into our room shortly after he left and said your dad is here and wants to show you something.  I got out of bed and he had this paperwork in a plastic sleeve.  He told me to pull it out and he had this wicked grin on his face.  It was a promotion letter making him Director Worldwide of the company.  He was smiling so big and he had his eyebrows raised like eh?? eh??  So I smiled and said, yah I know Dad. You are amazing.  He told me he would make copies for me and I watched him walk back across the street so slowly and hunched over.

I know that he was trying to tell me he did it.  His measure of success was to rise out of poverty and ‘make it’.  And he did.  I know that he was a man who did many things in his life, some good, some bad, but he loved my brother and I first and foremost and always made sure we knew it.  He was a successful dad.  One opposite of his own father. I wish I could have told him this before when he would have understood.

going backwards in time

Day 275/365: The Stand
Image by ~jjjohn~ via Flickr

I was going to write a post and as i was going through my

blog I came across this one from 2 years ago and it is

exactly what i was going to say.  I feel like I’m on a treadmill

that’s going backwards.

It’s safe to say I can’t stand depression. I mean who does? It sucks, sucks, sucks. I know that it is a chemical tweak in my head, I know that things are better than they seem, I know that I won’t feel like this forever, but even with all that knowledge-it doesn’t hurt any less.

I have people who depend on me. How extremely selfish of me to focus so much on me. I need to pull up my bootstraps, as they say. Or something like that…

How do people do it, I want to know. It’s been months, and I do mean months of joints pain, muscles that won’t relax, muscle pain/burning and weakness, rashes all over my body, feeling like there is sludge or lead in my veins, so heavy, heavy how am I going to make it through the day again? I ask God to help me. Please help me. And He does, sometimes. Other times I’m guessing it’s something I need to figure out on my own.

Sometimes I feel like screaming at everyone around me (that would be family, who always has my back) YOU TRY AND DO THIS FOR 3 FUCKING YEARS WITH VERY LITTLE ‘DOWN TIME’ AND SEE HOW ‘NORMAL’ OR ‘YOURSELF’ YOU SEEM. IT’S SO HARD TO BE IN PAIN/FATIGUE/SICK FEELING LIKE POISON OR SLUDGE RUNNING THROUGH YOUR VEINS/COMA SLEEPING/BURNING AND SO ON AND SO ON… I know it’s hard on them too though. It must suck to live with someone who is constantly in some form of pain or sickness. It has to be tiring, and not very fun giving giving giving. I hear this a lot “oh wait, why am I complaining to you when look at all you have to go through”. No. I WANT people to be able to vent to me. I want my husband to tell me all about his shitty day and not feel guilty about doing it. But if you see the bold print above, I must be throwing mixed messages out with my body language and mood. I suck. I haven’t ever said those words, it’s just pops up in my selfish little mind sometimes. Wow, typing this out is cheaper than therapy! Good thing, because the medical bills have drained us, we are broke.

The Big C tells me that it won’t always be this way and I wish I could believe him. I tell him “I know” and give him a hug because he needs to hold on to that and believe it so he can keep on going. This disease has really hurt the man that I love. He can’t stand to see me when I’m writhing in pain and there’s nothing he can do to help me. At least, that’s what he thinks. Just being there and holding my hand is helping me, I tell him that. But he wants to ‘fix it’. It drives him crazy. If the shoe were on the other foot, I would feel the same way. Helpless. It tears him up and it hurts to see him that way. Then I feel guilty. When I think about it, this illness affects us in so many different ways, and offshoots of ways, a lot more complex than I thought.

My body has done some pretty awful and unbelievably painful things to me and each time I would think, it couldn’t get any worse, I have never felt such awful pain, suicide pain is how I heard someone describe it and that hits the nail right on the head. When your body is in pain in multiple places for extended periods of time, the kind of pain that’s a 10 on the pain scale, you’re in the hospital and they are slamming your IV with morphine or fentanyl or demerol because your blood pressure is through the roof due to pain, and even though you’re floating with so much narcotics running through your veins, there it is. You can still feel it. It’s like it’s a mocking you-I’m here to stay. That’s suicide pain. How do you stay positive??? How do you get up in the morning and hide the pain face from your kids?? How do you stay happy??? I try so hard, but I’m in a place now where I’m failing. I’ve been there in that moment so many times, I NEVER would have guessed that my life would be like this. I just really want/need one of those days where I wake up and feel like the old Chelle. It’s amazing how much that gives to me just having a day, or even a few hours of feeling normal, it keeps me going for weeks. Then I think, I WILL go into remission. And, sometimes I just need to be reminded what normal feels like so that I can start being positive and work towards that.

The Bean is eating her cereal, late, and she is smiling and singing Twinkle Twinkle, in her own way which is totally amazing. Everything falls back into place now. She is my reason. For everything. Tomorrow will be a better day.

Special thanks to JJohn @ Flickr for the most beautiful flowers

the angry patient

I’m frustrated and pissed.  This post has no happy ending.  With that said-

I’m completely off all pain meds. Not just narcotic but all. I am still on the fence as to whether it was a ‘good idea’ to go off of narcotic pain meds. I don’t have that sick poison feeling anymore but I can feel everything that is going on in my body. This is not a good thing.  I feel like my healthcare ‘team’ set me up for failure in a big way.  I realize this sounds paranoid but when you are dealing with 3 specialists and an egotistical idiot of a primary care, and you are sick all the time?  You pretty much get to know them.

I haven’t had any treatment for the disease since March as the week of my April infusions I was hospitalized here.  Now my rheumatologist is convinced that the treatments caused it. I think he is afraid to treat me.  Cellcept was supposed to be started, then he said let’s get an MRI of your legs.  It’s been over a  month since the MRI and there is some communication breakdown between the hospital here and the hospital he is at. It’s been 5 months and I’ve had no DMARDs no biologics no chemo no anti-malarials nothing but prednisone. We all know how bad prednisone is for you. Do I sound pissy?  I do believe I am.

My pain doc ordered an infusion of lidocaine.  Yes, lidocaine. He said if my pain levels drop as I’m getting the infusion then I”m a good candidate for a heart medication that will work on pain.  I was really scared to see a bag of lidocaine hanging on the IV pole.  It sure seemed to me like it would kill someone.  Or at least just numb my brain.  As it turned out my pain went from a 7 to a 2 in one hour!  I cried tears of joy.  Something that works I don’t believe it.  The next morning I’m taking the pills.  Within a few days I feel this awful feeling that I remember too well.  I can’t believe this either. My small fiber neuropathy is going full tilt.  I am in shock. We’ve had this under control for quite a while now. This is the worst pain ever.  I know this and it just keeps getting worse.  C calls the pain clinic and my doc is out. OF COURSE.  So we call my neurologist who then tries 3 different meds in as many days but it’s only getting worse.  I’m angry and I haven’t slept in 3 days and I feel sorry for my family because I’m in so much pain I can’t help but show it and it makes me feel bad and mad at my stupid friggen body at the same time.  Nobody can help me and the pain clinic and the neuro tell me to go to the ER. No. I won’t go there anymore.  I spent months dosing down off pain meds and if I go they will hit me with dilaudid and all the withdrawal I went through will have been for nothing.  I am on fire, burning the burn that feels like someone hit me with gasoline and threw a match.  I used to have nightmares of burning to death in a house fire.  I really don’t know how I made it through months and months of this.  It’s only been a few days and I almost threw my computer and a fist through the wall.  I’m praying and I’m praying and suddenly I’m just really tired of praying.  I start to lose faith. I can’t understand why. What am I supposed to learn here?  How to suffer?  I’ve mastered it and I’m tired. I just don’t see what I”m supposed to be taking away from this chapter of my life and it hits me. It’s not a chapter. It’s forever. Never ending.  This realization has brought me to my knees. No faith, no hope.  This type of pain a friend of mine calls ‘suicide pain’ because it is so intense, so relentless that you literally can not see going on.  Heavy?  I can’t believe I lost faith. I don’t think my mind was working correctly. It’s a very scary feeling.

It was the heart medicine. I stopped taking it and within one day I was ok.  I haven’t even called the pain doc back to let him know that it was that.  I am so afraid he will say there is nothing they can do to help me. And each day that I go without any treatment from my rheumatologist I go back like a week in time. My knees are already blown out and I need my cane, but I won’t use it. I have been afraid to check my email this week as I’m supposed to hear back from the rheum.  I’m so afraid that he’s afraid.  I know he thinks he almost killed me and I really don’t see it that way.  But if he’s hesitant now in his decision-making then I have to start all over and find a new rheumatologist and the thought of that is just too much for me right now.

Well I feel better for just writing it down.

Day 5

It’s been five days since i’ve been off all of my pain meds and man oh man I am so regretting that. And then I’m not.  I did it.  It took a couple of months but I am pain med free and maybe, just maybe I will get the correct meds and the correct doses to help me out.  Then again…Big C called my pain doc yesterday to talk about the withdrawal and he’s out this week.  Just figures. His ‘on call’ doc doesn’t want to touch me with a 10 foot pole.  So, I wait until monday and just pray pray pray for some relief. I haven’t had and full body jerks or ‘worms crawling under my skin’ today so thats a plus.  Maybe tomorrow the body sick and shakes will be gone and just like any awful experience it will soon become a distant memory.

But, I get it.  I finally get it.  Before I got sick I worked for about a year in the Detox unit of a chemical and alcohol dependency center.  12 hour night shift.  The only staff in the building was one nurse and me.  With every shake of my body and retching all the memories are coming back.  I’ve held too many shaking hands to count, and I would say-hold on, it’s going to get better, this won’t last forever.  That last one was an answer to the question ‘oh my God, is this going to last forever??  I can’t’.  But I never experienced it.  Now I know, although work is gone for me.  I get so sad whenever I have an appointment anywhere really.  I want to get up early, shower and put my scrubs on and drive to work.

Day 6 has got to be better than this.

withdrawal- it’s what’s for dinner

And breakfast and lunch. My hands are shaking so badly right now it’s near impossible to type. sigh. I am still undecided if going off my pain meds was a good idea or not. It’s really hard to think clearly when you are in withdrawal. And the same goes for pain. When you are in constant pain and someone says to you, “hey, let’s try this” I don’t care if it’s something as lame as eating a dog shit sandwich or GOING OFF ALL OF YOUR PAIN MEDS, you will try it. Pain is such a powerful thing. It can and does bring you to your knees, begging just begging for it to stop. It messes with your head, makes you make decisions you would never make if you were not in pain. When my chronic pain doc told me I was ‘probably’ hyper-sensitive to my pain meds, but the only way to find out for sure is to dose down off of them. My answer-I’ll do anything, anything to try and lessen this pain. If he pulled that sandwich out of his pocket I would have asked for ketchup. Sooo, one thing that no one mentioned and I really didn’t think about was withdrawal. I mean we talked about preventing withdrawal while dosing down and that’s all I was focusing on.

I have been on really high doses of opiates for 4 years or so. I didn’t factor this into the big picture. Hearing that dosing down each week will ward off withdrawal was good enough for me. What I didn’t think about was when I was done. My body is going, any day now…where’s the morphine?? It’s painful, exhausting, depressing, and it’s messing with my head. I can’t type any more. I don’t even really know where I was going with this post. It’s just a rant I guess.  I’ll be back. =)

*anything and everything in this blog is my personal opinion and shouldn’t be taken as medical advice.

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