Life on standby

I am on standby on life. With everything going on, I am struggling to just hang on. I have had so much life happen that it is overwhelming. Dealing with life while having a chronic illness takes an amazing amount of effort. I takes twice as much work and twice the effort and we bare this with the constant remarks of “Other people have it worse” or “Its not as bad as you think”.

It is as bad as we feel.

So I close this short post with the fact that I have life stuff. I am continuing to fight, both my illness and my problems. I hope I have the energy to keep going.

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Focusing Life

Life has been rough for many friends and family. I have seen illness, heartbreak, money issues, and personal problems effect almost everyone in my life. It has been a rough and hard year for me and mine. I have had to keep my chin up, keep going and try to find ways of not only keeping myself going, but also the rest of my readers. In my life, I have found a very important philosophy. What you will seek, you will find.

When you are looking for reasons to be angry, they appear like magic. The little annoyances seem to come out of everything. The office chair wheel squeaking, the car that always seems to cut you off in the morning, and the sound of a sigh that just hits your last nerve like a marksman, all of these just seem to multiply. It can be so easy to see and even seek reasons to be angry if we are not careful.

Conversely, seeing someone who seeks out happiness and the joy that comes with it is awe-inspiring. That person who makes lemonade out of lemons, sees the rain as a way to make flowers bloom, or even their car breaking down as a way to meet a new person and brighten someone else’s day just seems magical. I believe we all have met someone in our lives that just seem to do that. These are people who are looking, seeking, grasping at the happiness, joy and peace that comes with it. These are the people who we strive to be at times but we always seem to fail.

Why is that?

I believe our focus is wrong. We are seeking he happiness, joy, good in life but have our eyes on the dark, terrible things that try and grab our attention. It is very easy to dismiss these happy, bright people as oblivious or even not paying attention to the issues. I argue that they see these issues and seek to find the good in life. Why spread the hate, anger, and depression? How does this help those who need help? I am guilty of not focusing on the good. I am seeking to change that. My first step is to look at some positives.

There are some amazing things that have come out in the disabled community lately. I was watching an infomercial on an Up walker or Upright walker. This is one of those medical devices that allow people who would be hurt by being hunched over in a walker, stand upright and keep moving without stress on their back. People with Parkinson’s disease who would not be able to hold themselves up now have a way to be mobile. Amazing. There is an Xbox gaming pad for disabled gamers. This is a customizable gamepad for people who have lost limbs, have limited mobility, or even people who can’t even hold a controller still be able to play video games and enjoy life. Microsoft poured tons of hours of development and research in making a fully customizable device that is able to allow people to still do what they enjoy.

What you will seek, you will find. Try to look for the positives. Start with a week. Set an alarm on your phone to go off each morning to remind you. See if you can find the good in the world. Let others know your success.

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.

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

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.

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.

 

 

 

Project 2017

I have decided to undertake a new initiative this year and, as always, push the boundaries in which I help people. With Valentines day (or month now…) coming up, I have decided to do a series of posts on loving yourself. Self care is one of the hardest things to do when you have a mental or physical disability. I have come up with a few ways you can improve your life without breaking your wallet and some are even free! I started making the list a few days ago and decided that I would do a post a day for the month of February.

28 post.

One month.

I am excited and nervous because I can see me missing a day. I hope to have all of them in a queue so that wont happen but it will be a lot of writing. I hope to see you all reading them.

#hugapony my friends

Ikkikon 2017.

I will be at Ikkicon 2017 and I will be doing a panel on invisible disability on Saturday Dec 31st at 6 pm to 7 pm. Come join me as we talk about living with invisible disabilities and share in a safe space our experiences and ways to help each other. I will have a special prize for the first two people who come up to me in the panel and say “clumsy draconequus” will get a small prize!(Kudos for those who get the reference).

I cant wait to see you all!

Come out and hug a pony with me!

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PS – Picture from http://tygerbug.deviantart.com/art/Hug-Life-Shirt-319992930

Truth and Vindication.

It has been a couple weeks from my last post. I have struggled greatly at what I have wanted to do next. I have thought long and hard about continuing my blog and how I help others. I thought upon my own condition and the battles I have fought. My own demons have been at battle in my body in my own mini civil war. I have been seeking answers for several years now.

And now I had them.

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Knowledge is a double-edged sword.

I have something I can look in the eye and know what I am battling. I have official paperwork and can show people that yes I am sick. I have been examined by a medical professional and have been given the answer. I can proceed on to the next steps and, hopefully, get the proper help.

It also cuts me deep. I cannot deny or excuse myself. I have to admit to myself that “Yes, I am sick.” I was not as prepared for the answer as I thought.

In some small part, I must have even had doubts myself. Who wants to admit to themselves they are broken? It goes to show that even I had doubts about myself. No one is safe from their own inner voice.

I am broken.

And that has to be OK.

I feel like I have run one of the biggest marathons in my life. I have worked hard at research into what is wrong with me. Consulting my doctor, friends, and family for information. I have used my unknown to help countless others. It has been the fuel to drive me to reach my hand out and pick people up. Now that I have the answer, am I out of gas? How do I go on from here? What changes now?

I have spent 2 weeks trying to answer these questions. I am no closer to a solution than I was then. But, I have not thrown in the towel.

Where one journey ends, another begins.

I find myself confused at the finish line I crossed. I feel like I stumbled through the tape and am now in a daze. My journey has been about answers for myself and others. Now instead of seeking answers, I will be looking for help and treatments. I will be walking down a slightly different path. A new race has begun.

I hope you all can join me on this journey.

May all your plushies get hugs.

After the Black.

Another Black Friday has come and gone. I was fortunate not to have to work this one. I was able to spend time with my family and enjoy time off. I saw several other friends online who were able to be off for the first time, for some, in 25 years. It was heartening to see people having a good holiday.

For every person that had the day off, I saw two more who had to work. As it stands, I saw a reasonably good day on Friday and it seemed that people mostly behaved themselves. While tired, overworked employees abound, everyone survived. 

I look at this last month of the year with hesitation. I see many hard days coming soon and different problems to face. I look over this past year and the difficulties me and mine have handled. I look at my year in review post for new year’s and I see so much that had happened. I honestly can’t remember a year that has flown by this quickly. 

I have an up and coming doctors appointment at which I have to confront my doctor about my medical condition. I am at the point at which my depression is under control for the most part. My anxiety is managed when I have an attack. However, I see my muscle and nerve pain has increased and my body fatigue and insomnia are through the roof and I know more is going on with me. I need more than just pills. I need some answers. 

I need to be diagnosed. Correctly.

I look at family. I want to do so much more for them and I feel I am being held back by so many things. My body can’t keep up. Job opportunities are not there, much less my current job. I just want to be there more for my family. 

I look at my blog. This diary of good times and bad. I see the people I have helped and the trials that I faced. I look at the joy I have spread and the sorrow I helped people through. I see it all and know in my heart that I could do more. 

I can always do more. 

I can always do more to make the world a better place. 

I just don’t have the energy to keep going sometimes. I feel trapped in this shell of a body. The pain and exhaustion overwhelms me. All I can think of is to press on. 

I do it for my family

I do it for you. 

I do it for me.

H

#hugapony my friends