Digital Frontiers.

It is an exciting day for me. I wanted to share two important pieces of news.

First, I have been published again on The Mighty.com. I have continued to try and be a voice for the community. It has been posted for only a day now and I already love the  response that is coming out. I have had someone ask to be kept posted on finding a new doctor. I have been humbled by how much other people care. I would love to share this blog and my writing to the world. Here is a link to the article.

When You Have to Fight to Get Your Pain Medication

Second, I have renewed my domain name for the blog. Anniversaries are important. These milestones are road-markers and reminders for us about how far we have made it. It is these points that show us that we made it another pass around the sun. May it be for better or worse, we have survived and in doing so we have shown the world that, while we may go through such hardships in life, we are still going, no matter what tries to hold us down. I love and thank you all for the wonderful support you have shown me this past year and before. I can never thank you enough. I will try and be a voice in the dark, help for the helpless, and your continued advocate and supporter of you as a person.

From the bottom of my heart, thank you.

Here is to next year.

#hugapony my friends

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My Opinion.

I have had a rough start to the year. The whole family has been down with the flu, much like the rest of the nation. We have been recovering and seem to be on the mend. There have been some interesting developments on the writing front I wanted to share with everyone.

I wrote my opinion on a recent The Mighty article, something I rarely share. They asked what it meant when someone with fibromyalgia says when they say “I’m tired.” I decided to share my personal experiences and it got put in the article which you can read here.

22 Things People With Fibromyalgia Really Mean When They Say ‘I’m Tired’

I then saw a few more articles asking people’s opinions on a few other topics but I felt I had said enough.

I was wrong.

I was emailed twice asking to comment on two different subjects. The first was about a new opioid drug research and what I had thought about it. I was flattered and agreed to share. I was then asked to share a photo of what a symptom of my illness looks like. I was hesitant to share but with being asked I felt obliged to answer. Both links are below.

Scientists Say They’re a Step Closer to Creating a ‘Non-Addictive’ Opioid

32 Photos That Reveal the Different Ways Fibromyalgia Can Present Itself

It has been an interesting month and I have been proud of myself and all of you! Thank you all for supporting me on this and reading. I know that today there was a HUGE influx of readers from the UK and I wanted to give a shout out to you all (or ya’ll as we say in the southern USA)! I wanted to let everyone know about my donation button where you can donate through PayPal. It has been a great start to the year and once again thank you all from the bottom of my heart.

#hugapony everyone!

World War me.

I am recovering from my last convention and am trying to regain lost rest and sleep. I want to thank everyone who came out to visit and I plan on special post for all of you. I am humbled and honored by the response that was given. It meant as much to me as to you.

I have been diagnosed Fibromyalgia, panic disorder, insomnia, and quite a few other conditions for 5 years now. I have experienced a lot and have struggled to find the help I need to make it through my day to day routine much less when life throws me curve balls. I have tried and put into place all manner of methods of managing my conditions. I have changed diet, put in a modified exercise regiment, and adjusted my life to fit my condition.

I also take prescribed opioids.

News outlets have been reporting on the “Opioid Crisis” that has arisen. They talk about the real effects on people’s lives. They talk about the families being torn apart with the misuse of the drug. They are representing every side of the issue.

Except mine.

I, like many other chronic illness sufferers, rely on the use of these drugs to lead somewhat regular lives. Understandably we do not represent all responsible opioid use. However, we do regularly get added to the group of opioid abusers. The news loves to report the numbers of total users or the max number of prescribed people in US. Using these numbers all kinds of data can be thrown around as to the approximate number of abusers. I am not ignoring the rising numbers of opioid related deaths, I fear that too many people are caught up in the panic and it is hurting the people who need the help.

I have recently changed pharmacies due to the national response. CVS has come out to say that they will not prescribe more than a weeks worth of an opioid to cut down on the number of pills in the public. This hurts in several ways. I now have more co-pays to look forward to paying. I now have the stress of going to the pharmacy once a week instead of once a month. I get to be faced with the pharmacy techs who judge me on my condition. They have to evaluate what I take, how many I take, and how often I take it to ensure that I am doing everything correctly.

It can be humiliating and debilitating.

It can also lead to them to refusing to fill a medication. When I was first being diagnosed, I had a tech tell me I couldn’t have any more medication, even though I was taking them as prescribed (Post is here “Anxiety now?“). I have also been through the panic of not being able to see the doctor in time or canceling my appointment so I end up running out before I can get the help I need (Oh Day of days). It is so tight now, my new doctor has a new form that I had to fill out saying I have to bring all my meds into the office each visit and be subjected to random pill count checks.

To quote a friend, “This is victim shaming.”

“We are not getting the prescribed medications from our dealer or a junkie. We getting these medications from a licensed doctor who has examined, poked, prodded, and run tests to find out what can help. We are not using these pills for recreational use. We are using them so we can get out of bed and live a somewhat normal and have a job.”

This is a crisis. My crisis. My own personal war inside me. I have to fight to get help. I have to fight to get time to go to the doctor each time. Taking off work to go see a doctor takes a lot of time and most jobs are not forgiving. I have to look at what I have and ration. I have several medications that are “As needed”. Do I take them now when I am having a rough day or do I save it in case I have a worse day? Why do I have to choose?  Who is speaking for me? For us?

I am only one small voice on a small platform.

I am speaking up.

Don’t forget us in the crisis.

#hugaplushie my friends.

 

 

 

Midweek quickie

I had a interesting weekend with a small social experiment. My sister posted the following picture and had some fun writing. I joined as well and post this picture.

22780259_10214405495881268_5210753693401125644_n.jpg

I soon sat down to enjoy having a bit of fun and work on my creative writing skills. I realized my mistake after 30 min.

Everyone was posting on it.

10, 15, 20, 25. They came in twos and threes. Everyone enjoying the short blurbs about themselves. I felt my phone going off every 10 min with another one. I cursed my sister (who promptly reminded me that I shared the picture voluntarily). I couldn’t sleep as I had more stories to write…..

In all honesty, it was a wonderful time and a big stretch of my writing and creative muscles. Thank you all who posted.

Just a reminder that this Saturday, Oct 28 @ 12pm, I will be have the My Stuffed Little Therapy panel at Nightmare Nights in Addison, Tx. I would love to see each and every one of you there.

Have a wonderful week everyone!

#hugapony my friends.

The Fibro-Dad

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.

Sara-hah-oh?

I have been seeing a lot of friends who have been using the private messaging thing that has been so popular around here lately. I have nothing against anyone who uses it. Seeing professions of love and hate spew forth makes it interesting to see. Trying to find out who these lovers/haters are have been driving some people to go to great lengths to find out who it is.

The thought had crossed my mind to try it out but I would rather tell you all to your faces and would rather people tell me to my face what we actually think. Honesty is better in my opinion. I would rather say to your face what I think about you. If you want honesty, you will get it. My family has a saying, “If you want my opinion on something, we will ask you 3 times. Each time we will ask ‘Are you SURE you want my honest opinion?’ ‘Do you want me to tell you what you want to hear or do you want to hear my honest opinion.'” We will give it, whether you like it or not.
I will say this.
I love you all and think each one of you is special. If you are reading this blog you are important to me. If you want more details just ask and I will tell you. I will give you all the information I know about you, and I will be honest, if you want me to be. Wherever you see this, ask and I will give you what I think.
I would love to hear from all of you about what you think of me. Good, bad, ugly. I would rather see people for what they actually think of me and not what people show me. I am a big boy, I can handle it.
If we had a bit more honesty in the world, maybe it would not be such a bad place.
May your day be great and may your coffee cup never be empty.
#hugapony my friends

Back in the Saddle again.

I have taken today by the horns and started writing. Again. I have taken a sabbatical from it to refresh my mind and handle life events. I return today feeling ready to start again.

Writing has a way of clearing my mind and making a way for new thoughts and ideas. I have mulled over a paper/book thing for a while now and I have hopes of continuing on in this pursuit.

Scared? You bet I am.

It is always hard to put yourself out there in front of people and share what you think. In today’s society, this is more true than ever. The current political and social environment make it quite difficult to express an idea or view.

This makes me quite sad.

How many writers, painters, and scientists are being squashed beneath the overbearing weight of the public eye? How many of these are being judged in the open court of public opinion?

Sharing yourself is a scary business.

I will continue on in this endeavor. I will try and share my ideas and thoughts to the world, God willing.

I hope you will join me.

#hugapony My friends.

Return to Madness

Hello my dear readers. I am glad to give you an update on life, the universe and everything. It has been a crazy couple of months and I owe it to you dear reader, to give a quick account of recent events. I do plan on having posts for most of these events, but I do have my largest convention I work (A-kon 28 in Ft Worth, Texas) this week and I will have to descend into that madness filled rabbit hole. But here is a quick list to expect:

  1. Bedbugs and Apartment roles. Let me tell you that this was a nightmarish 2 months that I will try my hardest to forget.
  2. Packing and moving. With bedbugs it was a “joy”. Under pressure and a time crunch was even worse. Add in fibromyalgia and it was hell.
  3. Buying a house. Now this was an amazing, wonderful, terrifying experience only to be made worse at times with incompetent people. We did get the house in the end.
  4. Having my third daughter. She is a wonderful joy. It was fun doing all of the above and below with either a pregnant wife (who was absolutely amazing) or a new baby. just an added layer of stress.
  5. Wedding. A family member got married and it was great to have family together for it. Babies met baby, grandmothers met babies, babies were EVERYWHERE. Seriously there is something in the water.
  6. A-Kon 28. We end this past 2 month roller coaster ride with the second largest convention of its kind in the USA. Unfortunately, I will not have my personal panel there but I will be with friends at this panel:

“Two Men Walk Into A Bar”

Sheraton Hotel – Thursday 8PM-9:30PM Magnolia rooms III & IV

So there is life updates. I am still here and still being your best pony pal and sharing life with all of you. I hope to see some of you at A-kon this year (click link for more info) May your day be great and,

#hugapony my friends

Self care day 28:Self care Wrap-up

Its has been 27 days of self care tips. 10,000 words written to help those in need. I think my hand is starting to cramp with all of the typing I have been doing. I kept my promise and posted every single day in the month of February. I was so worried I would miss a day and it kept me up nights writing late into the mornings sometimes but I made it!

I am going to list all the post here, in case you missed any or want to share all of them with friends who may need them. I do thank you all for joining me on this incredible journey this month. I hoped I help someone out there. I will also be adding a tab on the main page for easy access.

Please feel free to comment, like, subscribe if you found this helpful. If you would like, I do take donations on the link on the side with Paypal (or bellow for you mobile readers).

Thank you all.

#hugapony my friends!

Self care Day 1: Valet parking

Self care day 2: Candy day

Self care day 3: Self mail

Self care day 4: Finding your towel

Self care day 5:Cookie monster

Self care day 6:Picnic Baskets

Self care day 7:Netflix and you

Self care day 8: Blackout

Self care day 9:Writing people

Self care day 10:Sharing Happiness

Self care day 11:Appetizing Friends

Self care day 12:Flower power

Self care day 13:Nothing

Self care day 14:Crown Jewels

Self care day 15:Something New

Self care day 16:Peace of body

Self care day 17:Pillow talk

Self care day 18:Loving yourself

Self care day 19:Sweeter things

Self care day 20:Cleansing

Self care day 21:Bedhead

Self care day 22:Celebrity status

Self care day 23:Bubble bath

Self care day 24:Culture

Self care day 25:Zoology

Self care day 26:Treat your body

Self care day 27:Inner Plushie