Patreon Live

I have relaunch my Patreon. It is now live and active. Please share with will and help spread the message!

Why: This is a way to help support my writings and possible travels for events and panels.  I am looking to expand my outreach with stuffed therapy and this will help me reach a wider audience.

How you can help: By donating even a small amount, it will help with upkeep on the blog. I hope to move to the higher tiers of WordPress and add even more content.

What you can get: I have started with some rewards such as a personalized limerick for my $25 backers. If you have more ideas, I will add them!

Add your voice: By becoming a backer, you have the opportunity to add your voice and give suggestions to what you want to see.

I hope to bring more to everyone following the blog! Thank you all for the amazing support over the years and I am looking forward to the times ahead!

#hugapony my friends

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Patreon 2.0

I am currently looking into Patreon for the blog. I have tried it in the past and it didn’t work out. I had scraped the project but never deleted it. Patreon has done a few updates for writers and I have once again opened up my page. Here is a sneak preview for you special viewers.

Stuffed Therapy Patreon.

https://www.patreon.com/preview/2e993e217a55458793a580a69a509dbc

 

A Vacation, Part 2

Vacations are fun for a multitude of reasons. Being away from home, feeling special in public, and not having too many responsibilities. For someone with a chronic illness it has an unexpected side effect.

A vacation from yourself.

When you are at home surrounded by people who know you, there is a certain expectation. Those close to you know what you are going through and help out in the areas you are lacking. The flip side of this is they know how you used to be. They remember how you were able to do so many things. This can make things awkward when you are faced with an activity that used to be so simple but now is a task and a chore.

When in a new setting and with new people, there comes an easier understanding. You explain your condition and there is a moment of understanding (for the most part). You are able to be yourself a bit more than usual. You don’t have to hide behind the mask you put up when in pain.

Two main things came out of my vacation in this regard. First, you are able to truly look at yourself and see your condition in a new light. You get to be honest with yourself, in being honest with those around you. You get to see the amount of pain you are truly experiencing instead of trying to mask cover, or make excuses to yourself and those around you. This can be a harsh reality to face.

The second thing I realized was the effect of my condition of those close to me. I know I can get wrapped up in the misery of my condition and not see the reaction of those around me. Those around you are suffering from the loss of an able friend. A spouse who now has to pick up the slack. The brother who is not the superman he once was.

It is very easy to forget that our condition effects more then just yourself and your body. It touched the lives of all those who know you. The suffering reaches beyond your own body. The ones closest to you suffer with you. It is true we have to fight the guilt that is sometimes associated with not being able to do activities with love ones. I feel we tend to forget that those same loved ones are suffering as well.

Take a moment, all you chronic illness warriors, and reach out to those close to you and thank them. Tell them you love them and appreciate all the ways they help you. Remember, a vacation from yourself is not a vacation from those who love you.

#hugapony everyone.

 

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

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.

The Month of Love

January was a rough month for me and mine. Between rounds of passing both versions of the flu around the house since December and trying to recover from the holiday break, I am exhausted. We are now in the second month of the year and romantic minds turn to love (along with most retail businesses who have had hearts up since New Years).

Last year I wrote every day for a full month on the importance of self care. I gave many examples of actions to take to show that YOU are special. To show someone very special they are important to you. Yourself. Learn to love and take care of yourself. I am sharing a link to the whole month for everyone. How many of these did you do? I would love to hear from anyone about how these worked for you.

The Self-care month.

Whenever I talk about how special people are and how much they are loved, I always remember Mr. Rogers. One of my very few heroes I look up too. This kind and gentle man showed everyone they were special.  He told the viewer every time on his show that they were special just the way they were. He told them he loved them. He had a genuine care for other humans. The impact of his life was felt by so many, myself included.

Looking around in the world today, we need more people to see the love and share the love. We need to tell more people we love them. We need more people to be told they are special.

I will gladly start.

If you are reading this, I want you to know that I love you. You are in this world and are a part of my life. This may be a one-sided conversation at the moment, but I want you to know that you are special to me. By being here, reading this, you have brought joy to my life. If we have known each other all my life, or we have never met, know that I think you are special, just the way you are.

Love yourself, and know I love you too, and now you have two people on your side. Go out and share that love. Show everyone the world is a better place with you in it.

Hug a plushie 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!

This years end.

This is my final post of 2017. I sit and right this in a daze as I am extremely sick and have no energy to do much of anything. I wanted to post something to wrap this year up.

Acts of kindness amaze me. I always say I am very blessed when given the chance to show one. I had the opportunity to do one today.

I have been bedridden with a sinus infection/flu that has been absolutely horrific. My pain levels have not been this bad since my kidney stone. The full body aches on top of my full body aches and a fever that almost made me rush to the hospital have made my last week of 2017 less than stellar.

Enter an email that I received saying I had been given $200 on my PayPal account. I tried to sit up and take notice and was thoroughly confused and delighted. I have had my donation button on my blog for quite some time now and I was overjoyed to see money on that account. I was just about to inform my wife when I get an email from the this wonderful person who was supporting me. I start reading and see that I was given the money by mistake and that she had messed up and if I would please send it back.

My first thought was that this was a scam. I double checked my PayPal account and saw that the money had cleared and was firmly in my name. I checked that it was from a legitimate source and it was. I was doing a few more checks when I received a phone call. It was this same person asking, pleading with me to do the right thing a return the money.

It wasn’t until that moment that I realized that I never once thought of keeping the money for myself.

I have tried to be an kind man. I try my best to be honorable. I have been known to be honest to the extreme. When I was 6, I once received 2 bottles of Gatorade from a vending machine at a Walmart and turned one into the service desk because I didn’t feel right to keep it as I didn’t pay for it.

I pulled myself to my computer and managed to refund the money. Most of the time we have to go out of our way to perform acts of kindness. Sometimes acts of kindness are thrown at us. I end this year with one such an act. May much more kindness be had in 2018.

#hugapony my friends.