A new hope.

Even during the hardest of times, times of trials and hardships, I have been blindsided by how blessed I am. I have had my fair share of struggles and in doing so I have see so much good in the world. I have the ablility to do it. Even if it pains me.

Egg sellers for Easter on the side of the road have reminded me that I am doing well enough in my life. I have not been brought down to the point I have to sell thing s on the side of the road. I am able to support myself and I have found ways to get though almost anything that I am facing. On the days I am unable to do so, I have built a network of people to help me get through it.

I encourage you all, keep going. I believe in you and hope I can help share my strength to each and every one of you. Through the darkest, bleakest time of my life I am still pressing on. So many times I have almost quit and I didn’t. Let this post be a rallying cry for you.

Strength in numbers.

I share my stories and my life with you all and try to show that even in the worst of times, I have found ways to keep going. Share your story. Encourage someone as well. Comment where you see this. Share it with me or your friends. Do not hide yourself from the world. You deserve to be heard, loved, and respected.

Dear readers. I hope you see this post and feel uplifted. I hope you take 5 deep breaths and reset and center yourself. I hope you put on some of your favorite music and listen to a full song, uninterrupted, with your eyes close and sense peace. I pray that each one of you feel some comfort. It is what I can do from where I am.

#hugaplushie my friends

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Running scared.

I have spoken on opioid use before and how it is getting harder and harder to receive a prescribed prescription. The opioid crisis seems to be in the news in a lot of places from talk radio, to the nightly news, to even Congress. I personally have written how doctors have become more and more adverse in regards to allowing the prescriptions to continue even if the person has been on said opioid for 5+ years with no ill effects. I have also written on how pharmacists have the ability to deny a medication based on a visual diagnosis and can refuse to give you the required medicine that has been authorized to you.
In all of this information, or misinformation, that is flying around, we encounter yet another advisory in this “crisis”. The public eye. Friends, family, and even strangers who find out what medications we are taking and the judgment is immediate. Everyone has an opinion, everyone has story they heard. The response is overwhelming.
I heard a news story recently that told of a pro American football player who was removed due to violations to the NFL’s drug policy by smoking marijuana. He responded with a video of him, while smoking, that it helps with his pain and mental health. He then spoke on how it is better for him to smoke that instead of being addicted to opioids like he has seen.
My chronic illness is not your scapegoat.
On a more personal note, I have had people come forward with threats that I cannot be taken seriously because of my prescription. The use of opioids in my past, it has been over 2 years, has now given people a reason to judge me further and to disregard my opinion, my judgment, and almost anything because “We just don’t know or cannot see the effects of those evil drugs on you yet.”
This is madness. I, like so many chronic illness sufferers, have daily struggles to get to work, take care of ourselves, fight an illness, fight doctors and pharmacists, and the public image of what medications we take. In all of this, we then get told we do not matter because of the drugs we are supposed to take to live have affected us too much.
Where is our voice? Who will speak for the trees?
I experience the “common knowledge” from people who know all about how bad the opioid crisis is and how they know what is better for me than my doctor. It is now said with such surety that everyone knows the horrors and effects of how it devastates lives. How dare anyone speak up in defense of this terrible drug use!
I am. Someone has to say something. I am tired of being judged. I am tired of being put in a box and quantified. I am tired of being labeled and categorized because of my medication. Is this how we deserve to be treated? With judgment and scorn about our illness and our help? How should we then live? We have to stand up and speak out.
#standwithaplushie my friends

Resolute Resolution

As we come to the midpoint of the first month of the year, we come into the time period where most of us abandon our “New Year’s Resolutions”. The first 15 days are difficult and making a habit to keep takes from 21-30 days according to most studies. So I have one question for you, dear reader.

How well are you doing?

I will be the first to admit I am not perfect. I have messed up a day or two. It has been extremely difficult to keep going with depression and my physical condition. I also tried a new thing where I started my “resolution” the day after Christmas. This way by the time New Year’s rolled around I was already a week into my workout and diet.

Now I would say again I have missed a day or two. I also weighed myself and I am 5 pounds (2.2 Kilos) HEAVIER then I was when I started the diet. It can be extremely discouraging to put time and effort in and not see the returns just yet. I understand the pain of not seeing the fruits of your labor.

Now is not the time to quit. Now is the time to push through. Now is the time to say I will continue instead of giving up. Given up? Time to start back. The key to it all isn’t failing. The key is to continue going even after falling. You pick yourself back up and you start again. Fell again?

Keep going.

Life isn’t going to stop because you fell. As much as wish we could get a break, or we make a break, life gives us no chance to catch our breath. Then, when we take a breather, we end up living in a “break“. In the moments where we are finding ourselves, take the day off, all activates that we need to recharge ourselves, we stay there.

Are you living in a break?

Find the motivation. Listen to the music that boosts you. Find that small reward at the end of the day that gives you the focus to make it through. Now is not the time to live in a break.

Now is the time to live for yourself.

#hugaplushie my friends

Holiday happiness fighting

One thing I have noticed during the holidays this year is the treatment of people and employees. Having a chronic illness has made me very aware of people and the feelings they give off. I can sense more of when a person is having a bad day or the tension in the room. I always try and make mention of asking how someone is doing or listening and responding to people.

Every time I go into the gas station or grocery store, I greet the clerk and ask how they are doing. I try and hold a small brief conversation with them. The smiles I and nods I get are overwhelming. Just by the simple act of talking to them has made a difference in my life not to mention what happens after I leave.

I try and hold open the door or elevator for people behind me. Simple things that people get amazed over. The surprised look on people’s faces are shocking. I have even had a few ask why I would hold open the door for longer than two seconds. These very simple acts are so easy to do but it seems that more and more people are abandoning these acts of service.

I find this also translates into modern society in the fact that we have lost the art of finding the good in people. In this day and age of politics that seem to be dividing everyone, I have seen more people abandon being nice and courteous to one another in favor of treating people like a punching bag. I truly believe this stems from the lack of trying to find the good in people.

Finding the good in people can be difficult. I can hear the arguments in my head of why I should not try or bother to find it. “People are just to evil” or “You can’t fix the world” echo in my head but in honesty, I am not trying to change the world. I am just trying to change the world around me. If I surround myself with positive reinforcement, does that not change my own world?

In doing this, what else would change? By just trying to find a positive chord in a person, you are changing the way your brain thinks. Instead of going into a conversation with an attitude of “I don’t like ‘this’ about a person”, you remember they are a good parent, they take care of their elderly neighbor, or they stop and pet each animal they find. You start looking for the good things in this world. You try and find commonality with a person. What would change in this world if more people did it?

Don’t go out and change the world. Start small and change yourself and let that change your world.

#hugaplushie 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.

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.

Pleasant Company.

Over the past few weeks I have been introduced to many people who suffer from chronic illnesses and disabilities. Some online through blog posts, some through video games, and others in real life. I have gotten to talk and help quite a few people who are suffering. I have seen people in so much worse situations and see them powering through with a strength that makes me ashamed of myself.

In my opinion, everyone who suffers like this goes through a period of time when they question themselves on how much suffering they go through. I have been hit hard this last week. I have question how bad am I, what level pain should I admit too, and what right do I have to suffer in all my suffering. One of my issues with invisible illnesses is that I am in constant stress over being judged on how I look. “You don’t look sick” “Are you sure you aren’t feeling well” “It can’t be that bad if you are still able to walk around your house” Words ring in my ears and brain, reminding me that it must all be in my head. Famous words for anyone suffering from fibromyalgia as most doctors are quick to through them out.

I have had personal events happen that reinforce this. I have been denied disability. I submitted to the 8 month long process that took place and have seen more doctors and nurse than I care to admit. Being weighed and measured, poked and prodded has been an absolute nightmare. I suffered through it and in the end I was deemed too fit to be on disability. In the end letter, it was determined that I did suffer from fibromyalgia, insomnia, anxiety disorder, nerve pain, muscle pain and more. A total of 9 severe problems with my health. They did not find these severe enough to warrant me disabled. My final icing on the cake was reading on of the last lines in my letter saying: “If your job is too difficult for your condition, find an easier job.” My mind’s sarcastic response was “Sure I’ll go to the job tree and pick a new job straight off the branch.”

I have also had to fight with new insurance and new medications. I have been prescribed Lyrica. This is the first drug that I have seen that is specifically made for fibromyalgia sufferers. Being new, it is expensive. The classification it has been giving by insurance is that unless every other test and drug has been used and found not to work, then they will not pay for it. Fighting to get help is one of the most common themes I see in chronic illness patients. As if we didn’t suffer enough.

In my recent post that has been published, I have been able to interact with many people that have a myriad of different conditions. I have wept over reading the stories of those who have suffered. I have talked and comforted those who asked. I have been praised for helping raise our voice so others can see. In all of this, I look back at myself and ask “Am I really that sick?” Do I have the right to be a voice if I am not suffering as much as those around me. I am constantly questioned on how bad my pain and condition is that I am beginning to question myself. Yes, I have pain but is it bad enough.

I read an article recently that brought it to light for me. Erin from The Mighty.com posted on how Doctors are Advocating on Pain Acceptance. Doctors are now looking into “pain acceptance” as a treatment philosophy. It is an eye opening to see the direction this is going. As someone who suffers, I find it interesting to see that not believing chronic pain sufferers is a new direction to go. To be told that we should learn to live with the pain is insulting. To be told that my opinion, the patient’s opinion is not considered and the doctor’s view of my pain and condition makes me all the more fearful of doctors who don’t listen. Being told that I should just accept and live in pain, which is something I do every day, makes my and so many other voices sound like we are complainers.

It is infuriating.

If anything I have seen over these past few weeks is how many there are of us. It has shown me that we need a voice. It has shown that I matter. It has shown me more kind and compassionate people who, suffering like me, agree that we are not being heard. We have to fight our illness. We have to fight for our diagnosis. We have to sometimes fight our doctors and pharmacies and lawmakers. We have to fight to make our voices heard.

Thank you all for the pleasant company.

#hugapony my friends.

One day at a time Ralph.

Wreck It Ralph. A wonderful Disney movie (which I love) that is about a video game character (another thing I love) that is depressed with his life (something I do not love but I live with). The main character, Ralph, is told to take it one day at a time. One day at a time is a wonderful view to take.

And something I have been trying to do this new year of 2016.

https://mystuffedlittletherapy.com/2016/01/16/staying-upbeat/

I made a vow at the beginning of the year to make 2016 a great year (I posted the link above). I am determined to do what I can to be positive. As I have a tendency to look at the bleak side of life, my wife often reminds me that you find what you expect to find. If you look for the bleak side of life, then that is what kind of life you will get.

I have had a very rough week this last week. I have felt more than beaten down than I have in a while. I shut down and didn’t talk almost at all on Easter Sunday. I normally would take time in this post to reveal what happened to me, how I handled it, and tell everyone to hug a pony for me.

Hold on to your hats, because I am not going to do that.

I am instead going to focus on the positives that have happened.

  1. I have moved to better place due to an amazing friend who opened his home to me and my family. He is one of the nicest, Godliest person I have known.
  2. I have been in better health than I have been in a long time. My medications have been working great so I have had some extra help to combat my deepening bouts.
  3. My girls are doing great at being homeschooled. I have been told that I have been a great teacher to them and they seem to be enjoying having me at home.
  4. I have been able to support my wife, to the envy of many other wives, with keeping the house clean, doing laundry, and keeping up with the home.
  5. I had a great birthday with amazing friends and family. They threw an amazing My Little Pony themed birthday and they jumped in with me in celebrating.
  6. I have made my blog a .com. I have been getting more mail about “starting” a business.
  7. I have had more interest in my blog from many different sources. I am waiting for more of these to come to fruition, but the uptick in interest has kept mine.

So there you have it, I am still fighting the fight even at the bottom of the valley. I hope this encouraging blog post helps people. Please sound off when you read this, on my blog, Facebook, Twitter, Tumblr, parcel post. Let encourage me as I hope I have encouraged you.

#hugapony