dad

The Fibro-Dad

/ Daniel/Codefreak / 2 Comments

Being a dad with fibromyalgia is a difficult life. The days are long, lacking energy and being racked with pain. You end up staring at the clock, trying to survive to the next min, hour, anything to the time when you can get relief. However, when you have your kids involved, this adds a new level of pain, shame, and hardships.

When I was diagnosed with fibromyalgia 2 years ago, my daughters were 5 and 7. I was already a full-time dad with tons of responsibilities. I was working full-time, managing flareups, and trying to find time and energy to be a dad. Over the next 2 years, my condition and health worsened. I had to leave two jobs over my medical conditions and ended up a stay-at-home dad. My wonderful wife picked up the slack on the job front, and my daughters started helping me at home.

I would have days were I could not move from the bed. My daughters became super troopers and would ask, “Daddy, are you having a bad pain day?” “Yes baby, I am.” My soul would be crushed at having my daughters help me. I was the dad. I should be the one taking care of them. Over the next year, I would learn to swallow my pride and shame, and learn that I needed to accept help. My girls adjusted and learned to cook, clean, and help me around.

Then my wife got pregnant.

We were overjoyed. I love my daughters and wanted the best for them. Now there would be a new little sister added to the family. I was so happy for a moment. Then it dawned on me that my new daughter would never know a daddy who was not in pain. This new life would never be able to see me at my full best. Would I have the energy to keep up with this new little one? Would I be able to overcome the pain to be there for my wife? How was I going to be able to help?

I was terrified and ashamed.

Throughout the pregnancy, I did my best. I got a part-time job to help with the bills. I helped around the house, pushing myself in ways I thought were the most I could give. Little did I know that more was required of me.

I was only able to hold the job for a few months before pain and fatigue set in and I was unable to continue. Amazing family and friends pitched in support in ways that still make me tear up. I pushed though until the wondrous day of the birth of my new baby girl. I was a proud dad for a third time. We brought this bundle of joy home and she is amazing. She laughs and talks and makes life so fulfilling.

My health chose to find this happy moment and turn things to 11.

Over the past three months, I have had my pain levels spike and maintain those levels for weeks. After two weeks at a time with no relief makes for a serious mental breakdown. I had to find days to which to take heavy meds just to get relief. Caring for a newborn is difficult in the best of times.

Doing it with Fibromyalgia is a nightmare.

There are no breaks in the day at which you can just lay down to try and relax your body. The little restless sleep that never gives rest is gone. You learn to survive on even less energy, more pain, more problems. That survival has made me go back to watching the clock tick by the minutes until my next moment of peace.

I find time to catch a break in these small moments of the baby sleeping. I rest for 5-10 min before another daughter needs me or I try and summon the energy to complete a task of housework. I would not trade my life with my beautiful wife and amazing daughters for anything. It just takes me longer and is harder for me to do the things that need to be done. Sometimes I don’t know how I am able to get all the daily tasks done. I feel that makes me a super hero.

The Fibro-Dad.

#hugapony my friends.

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Self care day 22:Celebrity status

/ Daniel/Codefreak / 1 Comment

I have had the fortunate opportunity to meet a few celebrities in my day. Working conventions as I do gives me the ability to bump into someone who ranks on the famous list. Most of these interactions are quite enjoyable and I can say that I am now personal friends with a few. I manage to meet and work with these people with a straight, professional face and treat them like I do with everyone else.

I might be giggling like mad in my mind however…

I love seeing famous people working with fans. When some of us in the convention circuit get together and tell stories, we all seem to know who cares for their fans. We see them talk and engage with them. They see someone light up and just start giggling like mad. Others seem to almost faint and just melt into the floor.

I might have had a hand or two in helping said fans meet people and I smile at their reactions.

My eldest daughter dressed as Harley Quinn (original Harley) for Halloween this past year. She was so proud of getting the details correct and making sure that the makeup was correct. I was a proud geeky parent taking her picture and seeing her happy. I took the snap shot and of course posted it up on my social media to show the world how wonderful she was.

I also tagged Tara Strong (voice of Harley Quinn) on my twitter

She liked the photo.

I was giggling and showed my daughter who then joined her dad in silent awe that she would like the photo.

I know that most celebrities are on social media now days. I see them respond to people and think to myself “Why don’t more people just ask a question or see if they can get a response?” I ask you, have you ever taken the time to just say “Thank you” to someone famous and see if they respond? Written them a letter saying how much of a fan you are?

They might even respond back.

Maybe you will feel as special as my daughter and I did.

#hugapony my friends.

It is always a pleasure bring you more day to day posts. I will continue to do so until the end of February. Please make sure to comment, share and follow along as I share some simple things to better your life!

Updating life, please stand by.

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I have been busy. I have been stressed out. I look at Bilbo Baggins talking about butter being scraped over too much bread with deep set envy. I long for days of “normal”.

I have hit a very rough patch. My meds are fickle at best at the moment. I have been sick for 2 weeks because my anxiety has shut down my immune system. My stress keeps me up nights. I stay up till 3 or 4 in the morning but still manage to wake up at 9 am or earlier because stress and heartburn from my stress wake me up. I stumble out to pills and coffee and spend the next 2 hours trying to find energy or the will power to do anything but just sit.

But it is in very short supply.

People don’t understand that anxiety makes you focus on everything and you can’t stop. You are hyper sensitive to you, those around you, outside events that you have no control over. You can’t push them to the back of your mind. You can’t “just act better”. “Just go make a difference in your life” is not an available option.

Depression then feeds on you as you slide down the hole which anxiety beats you down into.

I am beat up. I will keep fighting. I hope to feel better soon. I hope life returns to normal.

Resetting life is fun.

#hugapony my friends.

A hard Dad’s life, for us.

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It was, as we say in parentville, a long full day. It is 11:15 pm at the time of this writing and I am exhausted. This was a day for a Dad.

And I hope I was a good one.

I woke up to kids being awoken by the baby I watch during the day arriving. I made my coffee and Got the kids kids settled in for the morning. My dearest wife was up and out early with working (still an odd switch for me being home) and I prepared to start to the day. I was trying to get the coffee flowing in my veins but I could not get get motivated. I was sluggish and let the kids play and watching cooking shows as I struggled to get my rear in gear.

We have since moved into a new friends house. A lot of stress and pressure from were we were staying at was relieved. This brought with it a whole new stress. A stress that has made empires rise and fall. It has ended more than one marriage in my personal knowledge and is the one thing I have come to hate.

Money.

A dear friend who saved us from a difficult living situation has let us stay with him at no cost, and it has helped in more ways than I can count. The unfortunate side effect is that half our weekly income was also taken away in this move and we had to step up other bills. Medicine and medical bills have been due and past due. The shovel of paper is endless in the never ceasing tide in search of the green monster that I am to hold.

But it is not there for me to give.

I have been blessed by more people than I can name here who have come forward to help, and please don’t let me say that this is the most desperate I have been. I have lived in a time and place were I was trying not to steal a roll of toilet paper from work because I knew I had none at home. I have counted the pennies to go get a dollar burger from McDonald’s for lunch during a 12 hour work day and knew I had to make it last as my only meal. Hard times were every time.  I am truly blessed with dear friends and wonderful family who have helped me in every turn.

Help was also due today in the form of “tax return”. Tax time is a wonderful time for me as I have dear friends who I go to for my taxes and I get money to pay those horrid bills that stack against me. It seems odd to look forward to doing your taxes, but in my case I rejoice.

My dearest wife and I set out to do taxes and other errands. We had just managed to put money in the bank to pull us out of the overdraft scare that comes when automatic billing comes at the wrong time when we realized that it was late in the day and my wife had a work event going on soon. I also had been invited with my girls to go see Kung Fu Panda 3 and this was to be a time of joy with my daughters.

We went to the theater with friends and we settled in for a good time. I got us a Sprite to drink as it was going to run late and I did not want caffeine for the girls. My eldest daughter, however, did not appreciate the drink choice I bought. She sat there and refused my offers of drink to the point of tears. I asked in hush whispers what was the matter and she let me know she hated Sprite and all she wanted was water. I told her I would go and get her some when she burst into more tears and told no in full body horror. I sat shocked at the way she said it and asked why not and I was met with a “I don’t want to tell you.” I told her again to let me just go and get her some water and the look of horror filled her eyes and she begged for me not too.

I sat in my chair confused to what was going on when my daughter leaned in and said I didn’t need to spend the money on her. It clicked. I told her not to worry about it and I would go and get her some water so she could have a drink. She was crying so hard at this point, I wasn’t sure I could stop her. She said I didn’t need to spend money on her like this and she would be fine. I told her that she didn’t need to worry about that and I would go buy her a drink. She finally broke and let me go buy it for her but was still extremely upset that I did it. I told her we would talk more about it when we got home.

We left the theater in much better spirits as the movie was excellent (I will talk more about it in my vblog this week). We came home to my dearest wife returned and we all sat in our room for a nice chat. Both my daughters explained (in great detail for the ages of 6 and 8) that they knew how tight money had been and how their mom and I were so stressed about money that they were scared to ask for anything because they didn’t want to cause us stress.

My heart aches just writing about it.

Tears came to my eyes as I explained that I wouldn’t spend money I didn’t have on them. I told them I would never be upset at them for asking for things. I said the only time I would be upset is when I told them “no” to something and they kept asking or crying about wanting it. I explained there was a time and place to spend money and I would keep track of that. I explained that it was my job to worry about it, not them.

Oh dear hearts of children.

I realize that my stress had bled over to them and it angered me. It had disgusted me to my core. Oh little pitchers with big ears, what do you hear? I felt a failure as a parent. And then they did something magical.

I stood there beating myself up inside when they said they understood and that they would do their best to better. They said they loved me and mom and they would do what they could to help.

Out of the mouth of babies came redemption.

I still feel pride as well at how they reacted and handled it. I feel I have much work to do to be better, but they were with me with a second chance. Who hasn’t made a mistake?

I have.

And I will do better next time.

Hug a pony my friends.

Girly girls.

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I attended the most wondrous dance performance at a charming location in my living room. I sat down with my freshly brewed coffee from the local theaters café, some place called Keurig, and was told the show began in about 5 minutes.

The show featured 2 up and coming stars on the ballet scene. The choreography was stellar and intricate. Each dance move thought out with precision and tact. Seeing these young dancers dance must bring so much joy to their father, as I heard they were both sisters. There came an explosion of pixie dust at the end (made from non toxic biodegradable shaved crayons I am assured) that ended the performance. The audience broke out into applause for a full minute as the young dancers took 3 bows before retiring from the stage. All in all.

I got a chance to meet said young dancers backstage after the performance. I got hugs from both and was asked my thoughts on the entire production. I told them it was simply splendid and I could not wait for the next one. They thanked me and hugged me and asked then to play on Minecraft.

I love my daughters.

Hug a spouse, child, sibling, parent, friend, or pony today my friends.

#Hugapony

And the wind blows.

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The East wind has come. Change is here now and I get to share it with all of you. I know I have not had a chance to update in over a week, and I apologize. I plan on a few blogs to get you all up to date.

I have left my job.

I will also share were I have worked for the past 5 years. I was a training store manager for Gamestop. Now that I am gone I have decided to share that with you (so I can be honest and truthful of my feelings.

This was not an easy decision to come to as I dif not have a job lined up. I have never tried to leave a job without another lined up. The reason for this is that my wife and I have decided that I should be a stay at home dad.

Scary huh? ( I am terrified personally)

She has been working as a sales consultant for Jamberry nails. I will probably throw a plug in here for her sometime. I am standing behind her and I am trying my best to ensure that she succeeded. It is hard for me to give up my job as the primary bread winner. I have to say that because its true. It has nothing to do with her being the “wife” but my jealousy as someone who kept the money coming in. Part of this blog is to help me admit when I am wrong or what I am thinking.

And so you get to join me on this new journey.

I will be posting over the next few days about my last days in retail and my move to be closer to family. I want to thank you all for your support and your patience in my lateness of posting.

Still hugging my ponies in a new place.