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!

screenshot_20180702-0926071128029219.png

Advertisements

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!

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

 

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.

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!

Pain invades my sleep.

It has been a bad couple of weeks. Pain has been a constant reminder of my condition. An aggravating and hard reminder. One that reminds me that, yes, I am sick. A reminder I wish I could forget.

Waking up in pain makes me never forget. You lay in bed feeling like a major test in school is waiting for you, that you just worked out so hard your body is screaming, and if you even tried to roll out of bed and hit the floor, you would not feel it as your are at your pain level cap. I hurry to get pills in me and have them start working as soon as possible. A baby waits to be taken care of and I am responsible for this 7 month old bundle of joy and energy. I have to get going as soon as she wakes up.

Coffee is my nectar of the gods very morning.

Pain is also available in the evening, free of charge. I hurt in the hours leading up to the time when I can lay down to not sleeping. My body does not relax and is tight from being in pain all day. Insomnia sets in for a few hours. I used to be able to fall asleep in under a minute. I trained myself in college to fall asleep fast as I had 3 noisy roommates. Those days are gone now.

And now pain invades my dreams.

I had a dream last night. Dreams are a rare occurrence. Most nights I can’t fall into REM sleep. This night I was given a very strange view of my life. In this dream, I was hooked to a morphine pump for my pain and told to press the button as often as I needed it. As soon as I felt the pain, I would hit the button. Every 5 minutes I would press it. Over and over again. The pain never left me. It was dulled for about 30 seconds. Then it came back. For what seemed like hours I tried to fight off this pain. It never went away.

I woke to my usual pain and I grew afraid. Was this my life? Was this my fate and destiny to be chained to drugs? This is what drives people to depression. This is what causes anxiety. To be under constant bombardment and never getting a moments peace.

On common theme I see in my fellow pain warriors is when we do get a low pain day, we over-do it. We push ourselves and celebrate. We try so hard to live a normal life, even for a day. To get that day of relief is a blessing. It keeps us sane for when the next comes crashing down. It keeps us going.

I fully understand my need for help. I understand my need for medicine and how it helps me. I know some days, most days I would not be able to get out of bed without this help. This blessing and curse.

And my constant pain reminder that follows me.

#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.

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.

Event time!

I have an announcement! I will be having a Stuffed Therapy panel at Nightmare Nights next month! This is a My Little Pony convention in North Dallas, Tx on Oct 27-29th. My panel is set for 12 pm on Sat the 28th. I am very excited to be bringing my panel to even more people. I love being able to talk about the benefits of stuffed therapy and how it can help you. Being able to help people with their anxiety and depression is always enjoyable.

I hope to see some of you there!DanielPermenter

#hugapony my friends!