The little things.

One of the hardest issues facing someone with a chronic illness is facing what you cannot do anymore. There is a mourning and grieving process that so many of us face. You go through the Five Stages of Grief.  Denial, anger, bargaining, depression and acceptance all rush through you as you mourn the lose of some dear to you. Yourself.

It has taken away my ability to be Jason Bourne. All the action/super hero movies that I watch, I no longer look at and say to myself “I could do that.” I look at trampoline parks that my daughters want to go to for a party and cringe. I feel my body ache prematurely as my wife wants to do a marathon. You dread looking at yard work because you know you will be down for days and not be able to do anything.

Denial sets in when you see life starting to pass you by. You tell yourself to suck it up and do things. You believe what others tell you that you don’t look sick. You listen to what people say when they shout “Why can’t you just be normal.” You push and push to be normal and this makes your condition worse.

Anger sets in because you cannot keep up. You lash out at others who are frustrated with you at not being the person they remember. You scream in your mind that you should be normal and why is this happening to you. The anger rolls off of you in waves, pushing those who try to help you away.

Bargaining comes when you see people walking away who used to be close to you. You start to plead with people to stay. You cling to those last few people so hard it crushes them. You try to keep up and make deals. You try every supplement, exercise, and diet known to man in an effort to make things better. You bargain with yourself that it can’t get worse, but it does.

Depression sets in hard. You see no way out. In the deep hole you have dug, you see what you believe to be your only options. You find yourself trapped and weighed down by your illness. Loneliness, regret, and suffering. You see the bottle, pills or worse as your only way out. You thought at the beginning of all this it would never be this bad. In the general population, suicide is the second leading cause of death for people ages 15-24.

If you are at this stage, please reach out.

Call 1-800-273-8255
Available 24 hours everyday

Acceptance is the hardest to achieve. You have to fight your body, your mind, doubters, and all the other stages to get here. You have to accept that you cannot do what you could before. You have to grieve the loss of your old self. It can feel a very hollow victory when you still have a life chronic illness ahead of you. I look at these stages and milestones at how far I have personally fought to get over. You have to accept what you are now and that is OK. It is OK that you are sick.

I may never be Jason Bourne, but he is not real. I am. And I am still here.

#hugapony my friends

Advertisements

Gathering happiness

A HUGE shoutout to two of my Patreons for helping support me, Charles and Ed! Thank you for supporting me and making this possible! You two are truly amazing people! If you had not checked it out, Check out my Patreon page for early blog posts and more!  Patreon-My Stuffed Little Therapy

I had a recent social media post that was quite touching. I has been a rough time with pain lately and I was needing a boost. I posted a simple question.31281389_10215970592927716_4009656226335121420_n.jpg

This sparked a wonderfully long post with friends and family commenting from all over. I was flooded with memories from childhood, college, present day, all warm fuzzy feelings.

It was fantastic.

As some who has suffered from depression in the past and who continues to struggle with anxiety even now, it was an amazing feeling. The self worth went through the roof. Seeing people post, some I had not talked to in years, was amazing. The love and care that was shared was immeasurable. This got me thinking of what this could do for people who are struggling? I know I pull up the post and have read it a few times since. Seeing the kind, wonderful words brings back the same self-worth growth and warms me inside.

I have seen a lot of suicides in the news lately. A lot of people who are depressed and decide that ending the pain and personal suffering is the best choice. Having been at that end twice now, I know what runs through someones mind. You don’t look upon yourself as a person. You are a burden. You don’t see what other actually think about you. You see a drag on all your friends and family. Your brain tells you that you are not and will not be good enough for anyone.

We need to break that cycle of self doubt.

I challenge you to post this to your social media. Make the post and see what happens. Save the answers you get. Use it as another weapon to fight back the hard times. See what others took the time out of their day to say to you. Smile in the memories shared but not only you but others. Have a written document were people see the value in you. Have yet another tool, like stuffed therapy, to fight back. Even if it is against your own mind.

I will do my best to comment my memory as well.

#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.

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