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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As my world turns.

It has been more than an interesting couple of weeks here in my life. Seems the world is turning a closer eye upon me and is creating some interesting drama (both good and bad). I have started working overnights for a big box retailer as you know if you have read the blog so far and my body has slowly been fighting me more and more. Sleep does not come easily and when it finally takes over I end up in bed for 16 straight hours and miss out on my family and friends.

Depression, it seems, has returned to mess with me.

One of the more pressing issues in my life is the fact I am having to cut out my main medication for pain/depression. The side effects have been rough and growing and I was informed of the possible of seizures. Considering I have been taking this medication 3 times a day for 2.5 years makes me a bit concerned. I am slowly cutting back on the doses until I am able to get off of it fully but my body is already rebelling against me. Pain, it seems, has returned and brought friends.

I am just coming off of Nightmare Nights in Dallas, a personal favorite convention of mine. I have been involved in helping train some of the security staff there and the head of security, whom I work for at this convention, showed how much he has grown. I stood back and observed more than I had in many years working a convention and I couldn’t have been prouder of what he has accomplished. He and his team worked their tales off (pun intended) and handled things in such a professional manner. My security Lead thank me for the time and training I had put into him but he more than earned what he did. I know people who have worked for years and not had the poise to handle the stress nor the calming attitude it takes. Pride is not an emotion that comes often to me but in this case I was beaming with it.

I am also beaming with pride at my wonderful daughters. They have been so joyous in the upcoming baby and looking at new things to get when the baby arrives. We have had quite a few times of lost tempers and late nights with them, but they have been open and receptive. They have brought much joy to me and my wife.

My wife has been progressing at her new job and making leaps and bounds in advancing her career. She has jumped in with two feet and is making a difference. She is pushing forward with new training and helping and working all while growing a person inside of her. She is my life and my joy and I cannot imagine life without her.

As I continue on in life, I have decided to expand upon an idea that I have held in my mind for quite a while. I have always had the belief in taking time to personally thank people, send a message of encouragement, or just to be there for them. I have had a few opportunities pop up for these events to occur and I have tried to pounce upon them when they do. One of my faiths biggest commandments is to love one another and I hold fast to that. Loving people.

Simple concept, difficult to execute.

I hope to make a difference in peoples lives and to show them that they matter. Everyone needs love, including myself, and I can only hope for opportunity to bring it to them.

#hugapony 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

Pilling around.

I had another doctor’s visit this past week. My regular 3 month follow-up. It was supposed to be a regular check up but this was my first one since my asking about my condition and fibromyalgia. It was a bit hard to accept a negative response when I first asked about it. I was told it was all in my head and I was dismissed. It was not what I thought my doctor who has helped me so much would do to me.

I went in to the exam room and had all my vitals checked (lost 2 pounds at 210, 126/80, 97.1 temp). Chatted with the nurse, who knows me on sight now, about my emotional support dog and how much he is helping. Small talk. She left and I waited in silence.

After 5 minutes my doctor came in.

She asked how I was doing and I told her not very well. My pain had been flaring up quite a bit, life was still very stressful with moving into a new apartment (and dealing with new management and other issues), my wife being in another car accident (she was OK but is doing physical therapy because of injuries sustained), and surviving several other private things that I cannot share here.

She listened as she checked my lungs and commented a word or two of concern when needed. She then said she had been looking over my case and she agreed that she might have been too hasty in her decision to dismiss my claims, especially in light of me having increased pain. She was going to add another prescription to my usual medication to help with the pain.

I was surprised but happy to have her, in my opinion, back on my side looking out for me.

 

I went home and filled all my meds and in the next few days dealt with the addition of more side effects (all three of my meds cause drowsiness and dizziness) and my body trying to respond to them. It has been a rough weekend for me.

I have had to rely on my family and friends quite a bit as I have had more than several moments of having to clutch the wall in a dizzy spell, falling asleep in the middle of the afternoon, not mixing them up or overdosing, and making sure I am not driving. I am not sure people know the responsibility of taking medications. There is a lot more work than people know.

Making sure to keep track of them (there is a fantastic app called Medisafe that tracks when to take something, how many pills you have, and when to refill) is a part-time job. You become a pharmacist, almost, with knowing what to take, how to take it, when to take it.  You have to check in with those around you to see how badly its affecting you because your reality is skewed. You fight to maintain your concentration in the simplest tasks. You get criticized because you are on medication and you are weak and just need to feel better.

I am here to tell you that it is OK to need medication to help you.

I am here to encourage you that it is OK to get help.

I am here to tell you to talk to your doctor to get help.

I am here to tell you to stop listening to those who criticize.

Only you know what you are going through. I understand the struggle and the need for help. I have lived with the pain daily. It is beyond OK to look for help in your life. Lets end all the shaming in being prescribed medication BECAUSE YOUR BRAIN IS SICK. If you had a kidney infection or diabetes, you would take antibiotics or insulin to help your body. This is considered normal. The brain should be treated the same way.

Sometimes it can be therapy (stuffed or otherwise).

Sometimes it takes medication.

There is no shame in asking for help.

I’m not.

#hugapony

 

Contentment v Complacent

I have been know to be complacent from time to time. I get caught in a rut and just coast through my day as best as I can. While not good, I have felt that it just gets me through another day and I am able to hope for a better one tomorrow.

Contentment is something I am striving for now. I want to be content in what I have and what I live with. Contentment is feeling happy regardless of your life at that moment. It is looking for the joy in your life and the small things that help make it through the day.

I find that a lot of people confuse the two. They are not interchangeable. Complacent is lazy. It allows people and events around you to control you. It forces itself on you. You become Complacent. Contentment is looking and choosing to accept what is going on around you. You can still have bad days and be content. It is a state of being.

I have tried always to go from a human doing to a human being.

I am by no means perfect. My wife likes to comment on how people try to be perfect and strive for that perfectionism; people who try, always fail at being perfect. I agree, no one will ever be perfect. But you can be content. People who are content live better lives with less stress.

Now please don’t mistake contentment with complacency. You can be content and still strive for a better life with more in it. Here is where people veer off and think that by being content they do not strive for more. Complacency does this. You accept your lot in life and that is all you can hope for. The cards dealt you a hand that is horrid and you got to play on through. Contentment is realizing that you might can win with your cards already but, if not, you get another round the next deal.

Complacency is stagnant.

Contentment is found joy.

I have had to do serious thinking about my life and my mental and physical health in the recent months. I have had to make choices that will affect my life. I have had to recognize my own complacency. I have just accepted my fate and I have to live with it. We all have to live my mental illness and disability. I am making those around me, nay, forcing those around me to accept me and my condition.

Selfish no?

I now acknowledge that I started that path. I am not proud of it. I am now working towards contentment. I am working on helping others; either through panels or my blog or even a phone call from a friend. In a most recent panel, I talked about how my life has given me a superpower, my condition. It makes me more aware and effective in helping others. If I can show compassion and help others, who else will it inspire? I am choosing to be a better person and be content.

So I ask you, are you content or complacent?

I choose joy. I choose to find joy. I choose my soft plush ponies to hug and help me through bad times and am thankful for them. I am thankful for my family and friends who accept me. I am choosing to be grateful for my life. Complacency is a breeding-ground for bitterness and bitterness helps no one.

What do you choose?

#hugapony my friends.20141024_131856

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