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.

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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

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

Still fighting.

I am so tired of fighting. I fight my body each and every day. I fight to get out of bed. I fight to take my pills. I fight to get the energy to even move off the couch. I spend so much energy on just making it through the day. Now, I have even more to fight.

The opioid crisis.

I have been on my medication for over three years now. I have been steadily dropping the dose in order to not raise so much attention as to how much medication I take. This helps prevent the pharmacy techs not look at me with quite the judgmental eyes. I am on a third of what my medication should be. I do this at the cost of my own personal comfort. I trade my comfort and ability to be somewhat normal so I don’t have to be judged on what medication I have to take and how much.

I am entered on databases. I have to sign a controlled substance sheet now to document how much I have. I have to have my drivers licence scanned and copied. I am monitored on my usage. It reached a new level today.

I found out my doctor is retiring in a few weeks. It is always hard finding a good doctor. Someone who believes you and still finds ways to motivate you.  Someone who cares and wants to help your well being. This is not a great time for me.

I called to get my last set of medication from my doctor. I am trying to prepare for my search for a new doctor. I call in to the pharmacy and request a refill. They deny me saying I need to call my doctor to get approval. I call my doctor and they fax everything over. Call back to the pharmacy and they say that they don’t have any paperwork. I ask them to check again and give them the exact name and dosage of the medication. They then say it has been denied by my insurance. I tell my information again and that if need be, I’ll pay for the medication out of my own pocket. They then say I have been flagged for to much medication and that I need to use what I have left.

I have two pills.

I inform them again that my doctor is retiring, I have only two pills left of the main medication (an opioid based med), I will pay for it if my insurance won’t, that he faxed the information yesterday at 4 pm, and what should I do in time being without my medication. The pharmacy tech informs me that I have been denied and flagged by a government system that says I am receiving too much medication but that he will resubmit my information again to see if he can “push it through.”

It goes through.

My medication will be filled and waiting for me later this afternoon. My fears of what waits for me next time I need to get a refill are very real. I fight so much to just exist in a a relatively pain-reduced (I am never pain-free) world. Why must I fight bad doctors, bad pharmacies, and now the government tracking me?

I am so tired, and it is not the just the fibromyalgia and chronic fatigue syndrome.

I just want to get the help I need. I just want people to believe me. I am almost to the point of begging for help at times because people don’t seem to care. I wish I could explain it better. I wish I didn’t have to fight. Hell, I wish I didn’t have this chronic illness and had to take medication with the wonderful side effects. I already have such a love/hate relationship with having to take it, why must it be made worse with fighting to even receive it?

This is my story. This is my life.

Still fighting.

Its probably going to be on my tombstone.

#hugapony my friends.

That Next Big Thing.

I am going to take a moment and something amazing. My article has struck a chord and resonated with many people. It has now been published at TheMighty.com, three of their Facebook pages, 3 (!) more news pages, and has been put on twitter with a large Spoonie group. I have to share the links cause it is so amazing.
 
 
The word is spreading. It is incredibly humbling to share with so many amazing people. I am honored to be one to speak out. Let us keep the momentum going.
 
I love you all.
 
#hugapony.

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

Daddy issues.

I hate most media and news sites. This is strong coming from a guy who professes love and tolerance (A Brony motto, and it falls in line with my Christian faith). This story makes me so upset, I start shaking. I have held on to this story for a few weeks so I could calm down to write it.

Let me start with a link.

https://www.yahoo.com/parenting/fathers-controversial-photo-shows-him-just-being-104350839152.html

Read it? I hope so cause this is my soapbox and here I go.

WHY IS THIS AN ISSUE!?!?!?

This breaks my heart. As a father of 2 daughters, I find myself in the same scenarios as this good sir.  The hate that has been generated is beyond useless and completely unwarranted. People who are criticizing this father need to reevaluate what they are saying. This man is not ignoring his kids. He is not beating them, neglecting them or doing anything harmful. He is not binge watching Game of thrones, Honey Boo-boo, or Sex in the City in front of them. He is spending time with his kids, letting them paint his nails (I loved some of the comments made about “his homosexuality”), and not shooing them out of the room.

This is a father who is spending his time doing something he loves with his daughters doing something they love.

Why is it that because it is a video game he is playing he is such a terrible father but if it was watching a football game its ok?

I cannot stand bigotry and that is what this is pure and simple.

Leave some comments or share with your peers. Hug a pony my friends.