A Vacation, Part 1

I am currently on vacation in Tennessee visiting family. It is a welcome reprieve form life and the stresses in it. We have not had a true vacation in five or more years. This spring break for my girls is their first since entering the public school system. It is exciting to see their minds to take a break and I admire, and am so proud, of how smart they are becoming.

One issue I am having with this vacation is me. I am finding myself not being able to do the activities with others. I am in constant need of more breaks and rest stops. Some times I just need to stop and sit for 20 minutes as my energy levels are too low.

Chronic fatigue hurts.

This coupled with the pain I am constantly in makes it difficult to enjoy some of the exciting aspects of my vacation. I am having to accept the fact that I have more limitations on what I can do. This hurts more than I first anticipated.

Yesterday I went to a children’s arcade/play place with my two eldest daughters and my nephew. My girls had a blast running around in the playground area and climbing the inflatables. They wanted “dad” to run and jump and play. I smiled and did my best, but no where near what I felt I should be doing. It hurt me to tears and not being able to play with my girls.

Today we went shopping. I was the only dad in the group of 6 girls so I ended up with both shopping carts and helped with the lifting and sorting. It was a morning that was already rough due to a fibromyalgia flare up. I ended up sitting more often than not. I smiled a fake smile and pushed as hard as I could through the pain. It wasn’t enough and I felt terrible. I felt guilty at holding the group back, even though I knew I could do nothing about it.

It is a hard situation in the fact that I am suffering from a chronic illness, feeling that I am letting my family down by not keeping up, and then having the guilt and depression from all of it. Constant 24 hour pain and having some seasonal allergies pop up complete the horrid picture. I feel so tired of fighting.

And its not just the chronic fatigue.

I have been reviewing my condition and well-being these past few months. I have looked at my medication and doses and have decided that i am in need of an increase. I have been reviewing how much I have limited myself in lowering my dosage to not have to deal with the pending opioid crisis. I have talked with my doctors at lower it so I am not considered in the “addict” category. I am slowly realizing that this is futile and I need to focus more on making sure that my needs are met.

Then there is the guilt from others at taking a vacation.

Society seems to think that a disabled person is someone in a wheelchair or crutches, barely able to move ever. I have received, for lack of a better word, hate for doing activities that I love that I should not “be able to do” because of my condition. Just because I suffer does not mean that I cannot take a vacation. Do we give up our right to happiness by having a condition that holds us back? This does not mean I get to take a break from my illness. I have suffered everyday of my vacation. I do not get a break from my symptoms. Why must I suffer the feelings of others who feel the need to tell me that I must be faking if I go on vacation. Why add that to someone who is already suffering?

It feels incredibly frustrating.

We try to live normal lives. We deserve to have vacations and enjoy life when and where we can just like everyone else.

#hugapony everyone.

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Support day.

This year has turned into quite a roller-coaster for quite a few people, myself included. I , I feel as if we have had nine months of news stories in the span of only 60 days. I know I have had to look for the positive stories more than anything to remain hopeful. I have also worked hard to bring the fight for others like me who are suffering in the opioid crisis. During this time I have been dealing with a long run of fibromyalgia flare ups.

I am hurting, tired, and worn out.

This is a unique time of year. The darker, colder months of the year for the US and this leads to more depression. The break from holidays and the excitement of the new year has worn off for most people. It becomes harder to stay focused and to be able to focus on the positives.

It also happens to be my birthday time.

My birthday is in the beginning of March (actual date redacted). Birthdays were always an old day for me. I have been very blessed with a wife who goes and plans a wonderful day for me. She is quite a amazing at it. I quite grateful for all that she does. There can be one thing that holds me back.

My condition.

I have to take time every month and access my pain levels, what I can and cannot do physically, and more. It is difficult to look over the past month or two and see where I have declined, what I have done better, and general self care. In doing so, I have found myself in a rougher spot this time of year than most birthdays.

It is difficult to be in a happy time and be brought down by your illness. You struggle and fight to be happy and appreciative. Inside, you are trying your hardest, and want to shout out that it is all amazing. What can escape your lips is far less than what you want to say.

But still I fight. I know many who fight with me. I know many who fight for us.

I want to give a shout out to those who fight to be happy in the bad times. I am proud of you and I believe the world is a better place with you still in it. I want to give a huge shout out to those who help take care of us. You all go above and beyond with trying to show us how much we are loved and do amazing things. You make life worth living for so many of us. You are amazing and strong.

As always, a big shout out to all those who read and support me. I am humbled and honored that you choose to read what I write. You guys rock and make me feel like a rock star.

I ask all of you to give some love and gratitude to those who support you. Sometimes the best way to help yourself out of a hole is to help others. Showing love and compassion will return it back to you.

Thank you and I love you all.

#hugapony everyone.

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

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.