Focusing Life

Life has been rough for many friends and family. I have seen illness, heartbreak, money issues, and personal problems effect almost everyone in my life. It has been a rough and hard year for me and mine. I have had to keep my chin up, keep going and try to find ways of not only keeping myself going, but also the rest of my readers. In my life, I have found a very important philosophy. What you will seek, you will find.

When you are looking for reasons to be angry, they appear like magic. The little annoyances seem to come out of everything. The office chair wheel squeaking, the car that always seems to cut you off in the morning, and the sound of a sigh that just hits your last nerve like a marksman, all of these just seem to multiply. It can be so easy to see and even seek reasons to be angry if we are not careful.

Conversely, seeing someone who seeks out happiness and the joy that comes with it is awe-inspiring. That person who makes lemonade out of lemons, sees the rain as a way to make flowers bloom, or even their car breaking down as a way to meet a new person and brighten someone else’s day just seems magical. I believe we all have met someone in our lives that just seem to do that. These are people who are looking, seeking, grasping at the happiness, joy and peace that comes with it. These are the people who we strive to be at times but we always seem to fail.

Why is that?

I believe our focus is wrong. We are seeking he happiness, joy, good in life but have our eyes on the dark, terrible things that try and grab our attention. It is very easy to dismiss these happy, bright people as oblivious or even not paying attention to the issues. I argue that they see these issues and seek to find the good in life. Why spread the hate, anger, and depression? How does this help those who need help? I am guilty of not focusing on the good. I am seeking to change that. My first step is to look at some positives.

There are some amazing things that have come out in the disabled community lately. I was watching an infomercial on an Up walker or Upright walker. This is one of those medical devices that allow people who would be hurt by being hunched over in a walker, stand upright and keep moving without stress on their back. People with Parkinson’s disease who would not be able to hold themselves up now have a way to be mobile. Amazing. There is an Xbox gaming pad for disabled gamers. This is a customizable gamepad for people who have lost limbs, have limited mobility, or even people who can’t even hold a controller still be able to play video games and enjoy life. Microsoft poured tons of hours of development and research in making a fully customizable device that is able to allow people to still do what they enjoy.

What you will seek, you will find. Try to look for the positives. Start with a week. Set an alarm on your phone to go off each morning to remind you. See if you can find the good in the world. Let others know your success.

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Opioid-Ed

I am angry. I have been watching the opioid crisis “epidemic” for quite a while now. Congress just passed legislation to reform everything on opioids. I have read the plan and I see so many issues with what happened. I am deeply concerned at how it is going to affect chronic illness patients and I believes it shows exactly how the country views mental health and chronic illness as a whole.

 

The money spent is a stopgap. The call was for $20 billion dollars and the bill didn’t even get half that. Quoting the Washington Post, “Yet many public health advocates and experts say it doesn’t offer the one thing truly needed: The massive amount of funding needed to fully combat a crisis that deeply affects rural and urban communities across America.” It goes on to say how little prepared we are for mental health in the medical system. This is not the overhaul we need to fix the broken mental care that so many desperately need. This bill will only help people in the form of a grant which may or may not be available to everyone. Grants are competitive and once used up, there is no more help until more money comes.

 

Congress also had to deal with a little known rule known as Institutions for Mental Diseases exclusion rule. It had prohibited Medicaid from reimbursing substance abuse centers with a certain number of beds (16 or more) for patients with mental illness. Why this obscure rule that is decades old shows exactly how broken and old the system has become. An even bigger concern of mine is who is the oversight on this money now to be released? Are we watching were this money is going? Is it even being used properly? I know close friends who get run through mental health “mills” that don’t treat patients and are more concerned with getting money for the number of patients they process. This is going to feed into this broken system and we are going to see a rise in the number of claims in an effort to get a piece of this pie.

 

In the same thought, the number of opioid addictions are declining, however heroin overdose is rising. The CDC says that in 2017, out of 72,000 overdose deaths, 30,000 were caused by synthetic opioids. This is not prescribed medications. This is not for the chronic pain users. This is a synthetic compound that is in laced heroin and is an illegal drug. Almost all the chronic illness patients I know are responsible people and do not abuse their medication. These are the statistics that are being used against the people that actually need help.

 

I look at these actions and I know it is an important election year. I feel this is mainly a political grandstand and we are showing that we are not serious about reform. Chronic illness patients are once again overlooked and not even considered in the bill. It focuses on how opioids are a gateway to addiction. Congress and the general public view us now as heroin users and we need to be treated for our addiction and not looking for ways to help us except with small mental health improvements. That also shows they believe that chronic pain and other similar afflictions are viewed as mental health issues and not a disease. We can view addiction as a disease but not something like Fibromyalgia, that is all in your head.

 

Please senators, congress, anyone in government, come live in my head or body for a day. I have never wanted to do this before but I wish you could feel the pain me and so many others are in daily so you could understand.

A Perspective on Life

I have come to realize that every person, every being on this earth has a unique perspective. Everyone’s view point will never perfectly match another’s. Looking in the world of politics this is very evident. We see huge clashes of personalities and perspectives that make it all appear that we are all so different. We see each other with rose coloured glasses, each with a special prescription all our own.

We can see the cashier at the grocery store. This lazy bum who looks like they are just here until they get off. They have such an attitude and just seem to want to go home. They hate being here and never want to help me. I pulled out a coupon and I think they rolled their eyes at me. They are probably just waiting to get off to go smoke drugs. Better double check and make sure they didn’t steal my money.

Or.

They seem to be working the steady hours dealing horrid people and still manage to find a smile. I say “Thank You” and I see their faces light up at someone looking at them like they are human and not a robot. I see a mom of 2 working this and 2 other jobs to make ends meet. I see the college student who is just trying to pass finals. I see the older lady trying to supplement retirement.

Perspective.

We have the gas station attendee who smells weird. He gives me a creepy vibe every time he looks at me. God, why can’t he just learn English like the rest of us? I bet he is here illegally. Why is he here? I just want to fill my car up in peace.

Or.

He gives me a smile every time I walk in the door. He works hard, all year round, even on holidays when everyone else is closed and I forgot I needed milk. He calls me by my first name which he has remembered since the first time I met him. He got here by chance and is making the most of the American dream.

Perspective.

You hear the screams of why you am not making America great again. Still others block because we don’t agree. How can you not vote for or against people? How dare you not vote because you don’t agree with either side!  How can you not see the breaking of tradition? Why are you mad at this group and not mine? Have you not seen what the other side is doing? How dare you have an opinion that differs from mine? You must be a fascist. You must be a Republican. You must be a Democrat. What, you are neither? Then you not agreeing lost us this vote.

Or.

You see the over politicized. You see the people who are making money making rules for other people to follow. You see the grandstanding for the image. You see people who differ from your own views and want to know why. Not to change their mind, but to open yours. You stop looking at the labels and start looking at the people. You see real people with real opinions about real lives. Everyone has a viewpoint and voice, regardless of background. You see people agreeing to disagree and still able to hug each other afterward. You see compromise.

Perspective.

I feel that if we could start viewing the world through each other’s eyes it would change a few opinions. Elders remembering what it was like to be young and stupid. Teens remembering that the elders were teens once also. People standing in each other’s shoes just for a minute and seeing what life is like through my rose coloured glasses, knowing they would never fully understand but at least trying. Would we see  a difference?

Would you try?

Perspective. It’s the damnedest thing.

#hugapony my friends

Where Has the Happiness Gone?

I have been writing in this blog for 4 years now. I have shared thoughts and opinions and feelings. I have seen people grow and learn. I see people fail and break. I have seen a world of change and a changed world. I have also seen a change that scares me.

Where has all the happiness gone?

I see people, more often than not, getting nasty on social media. I see folks attack and fight bitterly over social and economic systems. I have seen a great number of people break off friendships and cut off loved ones because of who they voted for in the last election.

I ask you again, where has all the happiness gone?

Where is the brotherly love we used to feel for one another? Where is the rebuilding of America after 9/11? Where is the gathering of help for tsunami victims? Where is the love of Pokemon Go that had everyone, young and old working together towards a common goal? What has changed?

What are you doing to keep the happiness here?

How have you acted in a kind fashion lately? What acts of kindness have you performed? Did you hold the door open for that person running behind you? Did you let that car get over a lane in heavy traffic? Did someone need that quarter you have in your pocket? What smiles have you brought to others faces?

What have I done to change the world for the better?

Did I do enough today to make a difference? Have I smiled at enough people to show that I care? Did I say hello enough times in the elevator to make someone feel welcome? Have I fed the dogs for my friends? Have I encouraged my daughter enough about school?

Happiness is not gone from the world. We just have forgotten to spread it around. The we spread it, the more it comes back to use. I ask you all, dear readers, to consider who you interact with today, tomorrow, next week. See who’s lives you can change for the better.

Don’t let the happiness disappear.

#hugapony my friends

SPECIAL POST!

I am so excited to share with you all a new milestone. It is the most views in a single day ever in the history of the blog!! Over 200!! I am so excited about this and I have to say thank you to all the people in Germany who made this possible. You all are fantastic and wonderful people (PS send me food!) As a thank you I making this post in German as well in celebration! Also, be sure to check out the Patreon button on the right side and if you can help support me that would be amazing! Writing is not a full-time gig for me and any support would go a long way!

Thank you and I love you all!

Ich bin so aufgeregt, mit euch allen einen neuen Meilenstein zu teilen. Es sind die meisten Aufrufe an einem einzigen Tag in der Geschichte des Blogs !! Über 200!! Ich bin so aufgeregt und danke an alle Menschen in Deutschland, die das möglich gemacht haben. Ihr alle seid fantastische und wundervolle Leute (PS schickt mir Essen!) Als Dankeschön mache ich diesen Blog auch auf Deutsch in Feier! Schaut euch auch den Patreon-Button auf der rechten Seite an und wenn ihr mir helfen könnt, wäre das großartig! Schreiben ist kein Vollzeitjob für mich und jegliche Unterstützung würde einen langen Weg zurücklegen!

Danke und ich liebe euch alle!

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Take me home, Country roads.

Music is such a powerful healer. The sounds and vibrations can help break up stress and tension. Feeling the the beat can raise or lower your heart rate. It provides positive feelings and an escape. For someone with chronic illness, this can be such a welcome escape.

When I am going through a fibromyalgia flare or when anxiety starts to pump adrenaline through my body, I have a method of calming down. I use a sensory deprivation where I go to a dark room, put a nice heavy blanket on, hug a plushie, and I listen to music.

My personal favorite is the Lord of the Rings soundtrack (Fellowship of the Ring, Track 17 The Breaking of the Fellowship). I hear the notes and get lost in the music. It gives the soul something to attach on to and it pulls the body with it. By closing off the rest of your senses, with darkness and being alone, you get swept up in the sounds. It is amazingly peaceful.

In difficult times, music has a way of helping us find a way through. I have known quite a few people going through a bad break-up and listening to their couple’s song over and over. I distinctly remember living in a 22-foot pop-up camper with my family (6 people and a dog for 6 months) in a trailer park. The trailer site next to us had a husband and wife who fought like cats and dogs. Being a trailer park, and VERY thin walls, everyone in a 5 mile radius heard everything, much to our regret. The husband who leave each night slamming the door and the wife would play I Will Always Love You by Dolly Parton, sung by Whitney Houston while drinking wine.

Every night.

As a teenager, this was not a fun event each night. However, I realized that this was a coping method and was a way for her to calm down. The next morning they would come out of the trailer, smiles and hugs until the next evening. Now this is a very unhealthy situation and was horrible for them (and all of us around them). It has shown me that music can help in a very difficult situations and lead you through them.

I am currently facing a huge hurdle in my health. I am having my Tramadol removed from my medication. My doctor is no longer allowed to prescribe it to me. He was very chagrin while telling me. He was upset. Due to the “Opioid Crisis” I am found to be no longer fit to take it. After almost 6 years of being on it with little/to no side effects, a much higher quality of life, and one of the backbones of my pain management, I am being told there is no reason to have it. My chronic pain and illness disagrees.

Strenuously.

I have have to agree with it. I am having to go through a new cycle of pain management. I am having to adapt to life with severe pain once again on a daily basis. So in order to do this, I have been bringing out music once again. My new favorite is Country Roads by John Denver. I have listen to the track 20 hours in the last month alone, though not all at once. Most times it is only about ten minutes. And finding ten minutes to allow my body to relax and get a break from feeling is sometimes all I can get.

I will take it.

#hugaplushie my friends.

PS 

I have seen my readers in Germany SKYROCKET! I wanted to call upon all you out there and thank you with all that I have. Hugs and love to you all! I will being doing a special post for you all! PROST! ZUM WOLH!

Doctor New

I have had a lot of people ask me about when I am getting a new doctor. I have talked about how my last doctor retired and the one before that gave up on me as a patient. I have been through a terrible run of doctors in my life and they are usually not my favorite people.

Having a chronic illness mess going to the doctor a lot. Having an illness that a third of the medical community believes does not exist, another third that it is a mental issue, and only the last third that it is real is never a fun fight. Also being a guy, being diagnosed fibromyalgia is a an odd one as it effects women much more than men by a margin of 5/1. This is a fight I am used to with having to explain, yet again, that I have this illness and yes I need help.

I did my research on my doctor. Google reviews, doctor review sites, even your own insurance will sometimes have ratings on doctors. I highly recommend to everyone to look into your doctor, see what people are saying about him/her. See if they have dealt with your issue or see the personality of the staff. You have the power to see and choose your doctor. You have the power to find a new doctor. You do not have to stay with a bad doctor. I feel that a lot of those with chronic illnesses feel they have to stay with the doctor that they go to the first time and are stuck with them forever. If you feel the doctor is not listening to you, you can find someone different who will. If you feel the doctor has given up on you, get a second opinion. Find a good one.

I took my wife and baby with me for moral support. I had several panic attacks leading up to actually seeing the doctor. I get worried that he would not listen to me or would, irrationally, make fun of me. I have had doctors tell me that I was imagining things or that I was wrong about an illness and then I was proven right at a later date. I go in early, fill out my paperwork and wait. I am then taken to get my vitals taken and go into the patient room.

The doctor comes in, introduces himself, and asks what is going on. I explain I am due for a 3 month checkup and am due for a refill on my perceptions. I am explain that my last doctor retired and was looking for a new primary. He looked at me sternly and and questioned my medical history. I told him who diagnosed me, how many procedures I have been through, the tests run on me. He watched me carefully and informed me that I was on an opioid and started to tell me the dangers of the drugs I was on and that he did not believe that I should be on them. He said he would need a drug test and a blood test to confirm that I was the one actually taking them and I wasn’t selling them. I said OK as I was taking my medications correctly. He informed me that many people had been dying on the exact medication I was one.

This was not looking good so far.

I was starting to panic because I was feeling attacked. I, once again, was having to prove to another stranger that I was sick. I had been through so all this be before. I was given a cup to pee into and waited for the results. He came in to inform me that the test did not show the opioids I was taking and that he wanted more information. He asked for the names of all the doctors I had had, where their offices were at, who gave me the actually diagnosis. I grew frustrated. I give him all the info I had. He said the nurse would be in for the drug test in a min and gave me the physical exam. I winced and groaned as he pressed and push on the points of tenderness and he seemed surprised. He poked like someone who was expecting not to find something. He pressed a lot harder than I expect at first and then he realized he was hurting me. He had me sit up and left to get the nurse for the drug test.

I was embarrassed at all this. I was angry. I complained to my wife. I was frustrated. She gave me some amazing clarity. She told me to stand in the doctor’s shoes. I was a new patient, with an uncommon illness, asking for a drug that he believed to be dangerous, coming from a doctor who “retired” and had a urine sample that showed I was not taking  my medication. She asked if I was in his shoes if I would be suspicious. I said she had a point and kept pushing through.

My blood was drawn. I hate this more than anything. I had a nurse once hit the nerve in my arm and my arm went numb for almost a week. This nurse had to go get someone else as well making it last even longer. Then they had to switch arms. I struggled with it all and squeezed my little Fluttershy plush hard.

The doctor came back in and told me he was able to pull some of my records. He was going to refill my medications but that he wanted to go through the active medication list as it had some discrepancies. Evidently it showed multiple duplicate medications. I cleared them up and was gave information on each on and what had happened.

The doctor finally showed some compassion and started listening to me. He asked to hold the baby and started asking questions instead of demanding them. Hr told me that my medicine was not what he wanted me on but he wanted to try a new one to help ease the inflammation as he thought that it would help me a lot more. He was surprised that no one had tried it before. He agreed that I should have my doses increased as I was having more pain and needed more help.

We finished up, got my paperwork in order and I thanked him and left. I thanked my wife for giving me clarity and calling me out on being too judgmental. We talked about how organized this doctor was and how I had so many red flags that probably set off alarms all the way to Washington, DC. He had refilled my prescriptions, even if he didn’t agree with all of them, and had given me a new one to help me out.

We both had prejudices that we had to overcome. I was forced to look at the other side. It is always interesting walking in someone else’s shoes. I know I can get wrapped up in my own prejudices when it comes to my illness. I am glad I overcame them.

#hugapony my friends

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.

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