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.

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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.

 

 

 

Our daily choice.

I read an article that had something that struck a cord with me. I have heard the saying “just be happy and you will be happy” or “why don’t you just feel happy” or my favorite “you are choosing to be depressed”. I read the following and I was taken back. It fits so well.

If I told someone who was happy right now to be sad, they would likely have a hard time doing so. The opposite is quite true. 

I do want to give credit to the writer. The rest of the article is here.

https://themighty.com/2016/04/happiness-as-a-choice-meme-feeds-stigma-around-mental-illness/
I think we need to shout this out more for the people in the back to hear.

#hugapony my friends

Tired tired tired everywhere.

I have been so tired in the most recent weeks. Going back to work has taken its toll on me. My wife and kids have felt it as well. Starting school and keeping up with all the different jobs has been exhausting. I barely have time to function.

I came across a meme that help summarize how I have been feeling. I do feel that fibromyalgia could be changed to almost any chronic disease. I would be very presumptuous to think we have the corner on pain.

I am pressing forward. I am doing my best not to let this hold me back.

Any prayers would be most appreciated.

#hugapony

Helping hands.

I had a solo panel at Anime Overload in Austin, Texas this past weekend. I managed to speak clearly, not break down crying, and I hope I change some lives.

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It might not show it here, but it was an almost full panel with most of the chairs filled (including my thumb at the bottom right corner of the screen!). One of the things I do at this type of panel is close the door and make it a safe room. We keep what happens behind those doors safe and secure. Stories that are shared and experiences that happen are locked for only those in the room to hear.

I enjoy the help it brings to others. I have been asked to continue this type of panel for at least two other shows. It shows the growing need to talk openly about things like depression and other mental illnesses and give support to those who need it. I have been blessed to have people support me on this adventure and I am humbled to have been put in this position.

One thing I notice in this panel is the raw emotion that comes from the room. Being able to handle that and to deal with it has never been easy. I spent the first hour after this panel trying to keep to myself and deal with all the emotional energy that comes from talking/venting/sharing. I have yet to see a panel where at least 50% of the attendees did not cry (myself included).

Now this is not just a panel about openly talking about our lives but also how to help others and ways to deal with problems. I always invite people to share their lives and experiences with others to show what works and doesn’t work. I share my life and ways to help others. I push them to form a community of individuals to bond together and to build support groups.

At the end of the day I was able to talk to several people closely and give them some guidance in their lives. I was approached by the directors toward the end of the convention because someone (or more than one I am not sure) spoke out at a meeting requesting me to continue to do the panel. Again, humbled was just the first thing I felt.

I am drained at the moment but happy. I enjoy helping people and it makes me want to do more. It takes a lot out of me to speak like this but I hope to get better at it. If you were at the panel and want to leave a comment OR you would like to request a panel for a convention, leave a comment.

Leave a comment to just say hey if you want, I will respond.

Thank you all for your love and support.

#hugapony my friends

Panelling the walls.

I am on my way to a convention called Anime Overload to work, like I do at most conventions. I am also doing Another invisible disability panel. 

Fun times. 

I believe this will be a solo run, not that I haven’t done that before, so this will be interesting to say the least. Also, working and panels don’t always mix so again interesting. 

My, what an interesting life I live. 

Hope to see you out here.

The Great Unknown.

It has not been a good day/week/month/year mentally. I have undergone many a issue. I have worked harder on finding out more about myself and what is going on. I have worked harder on myself and my illness. I have tried to make things change. I have pushed to have more control over my life.

And I feel back behind square one.

Square Zero.

I am tired of being tired. I am tired of being sick. I am tired of hurting every single day. I am tired of being a mess.

I decided to write what I feel and what goes through my head when I am having a bad day. I wanted to show what goes through my head and what my mind is telling me. I wanted to see on paper and hold my issues in my hand. Try and see the tangible evidence of my mind spiraling out of control. I only wrote for about a minute, but it was not pretty.

I AM SELF-CENTERED. I am an idiot. I am a horrid person. I am a failure. I bring everyone down around me. No one wants me. No one actually cares for me. No one wants to give me anything. No one wants to do something for me without wanting something in return. I always feel guilty, even when sitting and reading. I don’t take care of the kids. I don’t fulfill anyone’s hopes, dreams, desires. I am not attractive. 

I am trying to sort through just went through my head what my mind tells me.

I know I am not a complete failure. (But you fail at so much)

I know I take care of my kids. (You don’t do enough)

I know people care for me. (They are just faking or feeling sorry for you out of pity)

I know my wife and kids love me. (They have to, they don’t have a choice)

I should not feel guilty about sitting and reading. (You are lazy for taking time for yourself and need to be helping others or cleaning or anything but what you want to do)

My mind is a battleground. I wanted share this with everyone. Not for pity or help. But to show that I suffer as well. I fight each day. I have people fighting with me. I am seeking new ideas and ways to help/sort/better myself.

You are not alone, dear reader.

Even holding the card in my hand, I see myself and almost want to take pity on me. I have to write things down to get them out of my head? Worthless. Even now I struggle to be free of my mind.

Even now I hug a pony.

 

 

 

I wish I had Cancer

Cancer is a disease that people can relate to and under. The causal head nod, followed by the “I’m so sorry” makes it so people understand that something serious is going on. People hear it and recognize that a person is going through one of the most difficult things to go through. One of our closest family friends is a cancer survivor. Eight years ago she got a terminal diagnosis. She says her first thought was “Thank God it’s cancer and not depression.”

Depression, anxiety, and other mental illnesses don’t carry that same weight. People don’t understand and cannot see the changes. Family, friends, and even doctors all look at you and say “It is all in your head”. While they are not false, this makes it seem like I have the ability to change my illness and “Just feel and act better and you will BE better”. It is easy to forget that these illnesses can be just as deadly.

Here are some statistics on depression/suicide.

  • Suicide is the 10th leading cause of death in the US for all ages. (CDC)
  • The suicide rates decreased from 1990-2000 from 12.5 suicides per 100,000 to 10.4 per 100,000.  Over the past decade, however, the rate has again increased to 12.1 per 100,000. Every day, approximately 105 Americans die by suicide. (CDC)
  • There is one death by suicide in the US every 12.3 minutes. (CDC)
  • Depression affects 20-25% of Americans ages 18+ in a given year. (CDC)
  • Suicide takes the lives of over 38,000 Americans every year. (CDC)
  • Only half of all Americans experiencing an episode of major depression receive treatment. (NAMI)
  • 80% -90% of adolescents that seek treatment for depression are treated successfully using therapy and/or medication. (TADS)
  • An estimated quarter million people each year become suicide survivors (AAS).
  • There is one suicide for every estimated 25 suicide attempts. (CDC)
  • There is one suicide for every estimated 4 suicide attempts in the elderly. (CDC)

With all this data, why is there such a stigma around mental and neurological disorders? Why are people so quick to judge? Why is it so hard to believe it IS all in my head due to my head having an illness.

It is frustrating trying to explain why you can’t focus on the happy. Your mind looks and seeks the flaws. You go and find thinks to fill the gaps in your day so the anxiety doesn’t catch up to you. You just try to stay ahead of the wave that is threatening to drown you.

And people stare at you.

They wonder why you are so different. They wonder why you can’t just feel better. They just want you to be normal. They are tired of you and all the baggage that you carry. They get tired of you and how you act.

Believe me, if I could just “Man up” and be a better person, I would have done it years ago.

No, I would never want or wish on anyone cancer. It is a terrible disease and I am glad so much time and research goes into it. I just want people to understand that mental health issues can be just as dangerous and deadly. Keeping people’s mental state in order so they can live better lives should be a focus for everyone.

I’ll step off my soapbox now.

#hugapony

A-kon panel #2

My second A-kon panel was not an easy one. I was part of a group that spoke on invisible diseases and disabilities. I was asked several months before, if I wanted to be a part of it. I jumped at the opportunity to speak. Unusual for a introvert like me. I, however, know that I have a way with words and thoughts and feelings. I know I can help people.

That I have, indeed, helped people.

We all gathered in a panel room, all unsure of what to expect. The room was almost filled. We sat down and our head panelist called everyone’s attention.

And we talked.

We, as the panelists, gave our stories. We gave our backgrounds and our illnesses. We gave our experiences. As our stories were told, I ended up passing some of the ponies I carry on me (my talisman against the evils of depression and anxiety) up and down the panel line to help every get through their stories. We gave a piece of ourselves to the crowd.

And they responded.

I do not believe there was a dry eye in the room. I saw some people get up and leave, only to come back with tissues.

Some cried for us. I had a close friend who said they could only see us as people she couldn’t help and wept. She had me in tears when I talked to her afterward. This kind and loving soul said she just wanted to give us all a big hug and make everything better.

Some cried with us. Some in the audience stood up to thank us. They were amazed that we had the courage to speak. They said they didn’t feel alone any more. We all were in a room that was a safe place, and the audience opened up.

It was awe inspiring.

After the panel the crowd came up to talk to each of us. Some wanted to know more of what we do to work through our illnesses. Others to reach out with encouragement. One will forever stick in my mind.

I have a wonderful young lady come up to me and thank me for speaking. She told me she had been fighting her own anxiety that day and had almost left several times, but she wanted to attend our panel. She said she was so glad she did. I thanked her for coming and started talking about what she had been through. She started to cry as I could see her beating herself up for having the anxiety but she didn’t know what else to do. She had nothing to help her.

She didn’t have a talisman against the dark.

I pulled out my mini Fluttershy and handed it to her. She took it as she wiped away tears. As she started to calm down, I asked her if she had heard of stuffed therapy. She said she had during my presentation but didn’t know much more than that. I told her that the plushie she held was the first step in helping. I showed her how much she had calmed down just by holding it and petting it. I showed her a weapon to fight with.

And I gave her my talisman.

The room stopped. Many there knew my symbol of stuffed therapy. Some knew it was my first plushie in this adventure. They knew it was my mini Fluttershy, and how special it was to me. Tears started to flow from my friends who were still in shock.

This wonderful person who clutched at the plushie started crying and hugged me tight. She thanked me over and over. She took a step back and looked at Fluttershy again. As she looked, I explained that that was my first plushie. I told her that I had it when I first went to the doctor. She look on in shock as I explained how much love and help that mini had given me. Shock then spread to the rest of the room as everyone saw me tell her that I wanted this dear girl, who was suffering, that I wanted her to take care of Fluttershy.

She broke down crying and hugged me again even tighter.

I said a quiet goodbye to one of my dearest friend who brought me so much strength and love. I passed her on to the next person to take care of her. I strengthen someone else to help them through life. I started to cry myself.

Everyone started to cry.

I am tearing up thinking about it now. I wonder how she is doing? I wonder how her mini Fluttershy is doing? I wonder if I helped enough?

I believe I did.

Goodbye once more, my dear friend. May you bring happiness and peace and love and joy to another as you did me. You were there for countless panic attacks. You were with me at my first doctors visit. You were there in the hospital when I was sick. You were there in the lowest times of my life. May you do well and do the same for her.

#hugapony my friends.

Updating life, please stand by.

I have been busy. I have been stressed out. I look at Bilbo Baggins talking about butter being scraped over too much bread with deep set envy. I long for days of “normal”.

I have hit a very rough patch. My meds are fickle at best at the moment. I have been sick for 2 weeks because my anxiety has shut down my immune system. My stress keeps me up nights. I stay up till 3 or 4 in the morning but still manage to wake up at 9 am or earlier because stress and heartburn from my stress wake me up. I stumble out to pills and coffee and spend the next 2 hours trying to find energy or the will power to do anything but just sit.

But it is in very short supply.

People don’t understand that anxiety makes you focus on everything and you can’t stop. You are hyper sensitive to you, those around you, outside events that you have no control over. You can’t push them to the back of your mind. You can’t “just act better”. “Just go make a difference in your life” is not an available option.

Depression then feeds on you as you slide down the hole which anxiety beats you down into.

I am beat up. I will keep fighting. I hope to feel better soon. I hope life returns to normal.

Resetting life is fun.

#hugapony my friends.