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

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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.

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.

World War me.

I am recovering from my last convention and am trying to regain lost rest and sleep. I want to thank everyone who came out to visit and I plan on special post for all of you. I am humbled and honored by the response that was given. It meant as much to me as to you.

I have been diagnosed Fibromyalgia, panic disorder, insomnia, and quite a few other conditions for 5 years now. I have experienced a lot and have struggled to find the help I need to make it through my day to day routine much less when life throws me curve balls. I have tried and put into place all manner of methods of managing my conditions. I have changed diet, put in a modified exercise regiment, and adjusted my life to fit my condition.

I also take prescribed opioids.

News outlets have been reporting on the “Opioid Crisis” that has arisen. They talk about the real effects on people’s lives. They talk about the families being torn apart with the misuse of the drug. They are representing every side of the issue.

Except mine.

I, like many other chronic illness sufferers, rely on the use of these drugs to lead somewhat regular lives. Understandably we do not represent all responsible opioid use. However, we do regularly get added to the group of opioid abusers. The news loves to report the numbers of total users or the max number of prescribed people in US. Using these numbers all kinds of data can be thrown around as to the approximate number of abusers. I am not ignoring the rising numbers of opioid related deaths, I fear that too many people are caught up in the panic and it is hurting the people who need the help.

I have recently changed pharmacies due to the national response. CVS has come out to say that they will not prescribe more than a weeks worth of an opioid to cut down on the number of pills in the public. This hurts in several ways. I now have more co-pays to look forward to paying. I now have the stress of going to the pharmacy once a week instead of once a month. I get to be faced with the pharmacy techs who judge me on my condition. They have to evaluate what I take, how many I take, and how often I take it to ensure that I am doing everything correctly.

It can be humiliating and debilitating.

It can also lead to them to refusing to fill a medication. When I was first being diagnosed, I had a tech tell me I couldn’t have any more medication, even though I was taking them as prescribed (Post is here “Anxiety now?“). I have also been through the panic of not being able to see the doctor in time or canceling my appointment so I end up running out before I can get the help I need (Oh Day of days). It is so tight now, my new doctor has a new form that I had to fill out saying I have to bring all my meds into the office each visit and be subjected to random pill count checks.

To quote a friend, “This is victim shaming.”

“We are not getting the prescribed medications from our dealer or a junkie. We getting these medications from a licensed doctor who has examined, poked, prodded, and run tests to find out what can help. We are not using these pills for recreational use. We are using them so we can get out of bed and live a somewhat normal and have a job.”

This is a crisis. My crisis. My own personal war inside me. I have to fight to get help. I have to fight to get time to go to the doctor each time. Taking off work to go see a doctor takes a lot of time and most jobs are not forgiving. I have to look at what I have and ration. I have several medications that are “As needed”. Do I take them now when I am having a rough day or do I save it in case I have a worse day? Why do I have to choose?  Who is speaking for me? For us?

I am only one small voice on a small platform.

I am speaking up.

Don’t forget us in the crisis.

#hugaplushie my friends.

 

 

 

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.

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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.

Stuffed post.

I have just received two more of my “My Little Pony” Build a Bear stuffed ponies. They will be added to an ever growing collection. The two new ponies are from the MLP movie. When I get them stuffed and ready, I will share a picture of this collection.

I have gotten more than a few strange looks these last 7 years over my love of the “My Little Pony” show. I have gotten even more strange looks from being in the furry fandom for over 20 years. I have weathered them all with an understanding of being different. I have never felt the need to change. Why should I change what I like and enjoy because you are uncomfortable with what I like and enjoy. I don’t shove my fandoms in people’s faces so you are free to ignore me. I would rather you ask questions and try and understand.

I would have to say I have been an ambassador to those fandoms for a long time. Quite a few people have come to me with questions or to seek my opinion on my fandoms. I have never backed down from answering honest questions. I feel privileged that people trust me enough to ask about them. It gives me great joy seeing others who knew nothing about these fandoms show interest. If not interest, at least the understanding of why i, and others, enjoy them.

Stuffed therapy is also in that vein of being weird. I have been a proud advocate for this self therapy that I have seen help others. I have work panels, sat privately with people, even started a blog on trying to help people. Having something big or small, round or thin, fuzzy and soft near you when you need it. That little totem that grounds you.

Your stuffed little therapy.

And mine as well.

Find things that make you happy. Share that happiness with others. Improve yourself and then help others improve themselves. Share your love and passions.

#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!

3 Year anniversary

3 years ago I decided on a journey to help others fight anxiety and depression with plushies and ponies. This was a journey of self discovery and meant really just to channel my feelings and emotions. There was such a draw and almost demand for more that overtook and surprised me. It was a welcome joy to have a platform to help others.

Over the last 3 years, I have gotten to meet a few of you in person. It is always an amazing experience to see how you have personally effected someone’s life in a positive way. In all honesty, it is what keeps me going some days. I have my bad days and there is always someone who brightens my day. Thank you all from the bottom of my heart.

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Looking ahead, I hope to be more active in have panels and have more of an online presence. I have a few articles with The Might.com in the works and a writing project that I have shared with a very select few of you that I hope to bring to light one day.

If I have effected you in some way over the last 3 years with my blog, Please post a comment somewhere here or on social media. I promise to respond.

Once again thank you all!

#hugapony my friends.