Special Abilities of Special People

Having a chronic illness is almost like having a few cool super powers. I have mentioned this before with past writings that our illness has made us almost hyper aware and sensitive to many sights, sounds, and smells. These abilities come at a cost of our illness but they are something that I hold on to as something that makes me special.

1. Hyper hearing – I have noticed that those of us with a chronic or mental illnesses can hear so much better than our healthy counterparts. We can walk around in the dark and hear our foot falls and know where we are in the room. We can pick up a pill bottle, shake, and know our medications by the sounds it makes. We can hear the pain in peoples voices that they are trying to hid. We can hear the stress, anxiety, and even sometimes someone lying to us. This comes at a cost of being hurt by loud noises, yelling, and other panic inducing sounds.

2. Super sight/awareness – We pick up on the little details. The person fidgeting in pain in the corner of the room. When someone being uncomfortable around so many people. The look in someone’s eyes as they fail to meet anyone’s gaze. We can feel the room and know the mood immediately. We pick up on the smallest changes in someone’s routine and are extremely observant to those we care about. The weakness to this is we often focus so much on other people we do not focus on ourselves as much. We also can be sensitive to light and awkward situations can cause physical pain.

3. Intelligence/wisdom – This one is a bit different. I know that brain fog can be our weakness but when we have a good day, our brains fire off like a super computer. We know we have to take advantage in those precious few hours of being able to think so we tend to work through all of the different areas of our lives. On the other side, when we cannot think or even move from the bed, we tend to stay quiet. This gives us time to think and mull over what is going on. By taking, or some cases forcing, time to slow down, we are able to thoroughly think through each situation. Besides the brain fog as being a weakness, you are also sometimes observed as “Not being sick” because you are too smart or have your life together. What they don’t realize is that we know we will forget things and we have a million reminders, post it notes, and other various systems in place to help us not forget things.

If you noticed, I put a weakness with each super ability. Just like all super heroes, we have our unique weaknesses. Those kryptonite are areas we should be aware of and knowing is half the battle.

These are just three different areas where we are super! I know there are others and please feel free to share those with me, I would love to read about them. I believe more knowledge is power in this regard and we need all the encouragement in world some days to make it through.

Now go and be super and remember, you are special just the way you are.

#hugaplushie everyone

Advertisements

Resolute Resolution

As we come to the midpoint of the first month of the year, we come into the time period where most of us abandon our “New Year’s Resolutions”. The first 15 days are difficult and making a habit to keep takes from 21-30 days according to most studies. So I have one question for you, dear reader.

How well are you doing?

I will be the first to admit I am not perfect. I have messed up a day or two. It has been extremely difficult to keep going with depression and my physical condition. I also tried a new thing where I started my “resolution” the day after Christmas. This way by the time New Year’s rolled around I was already a week into my workout and diet.

Now I would say again I have missed a day or two. I also weighed myself and I am 5 pounds (2.2 Kilos) HEAVIER then I was when I started the diet. It can be extremely discouraging to put time and effort in and not see the returns just yet. I understand the pain of not seeing the fruits of your labor.

Now is not the time to quit. Now is the time to push through. Now is the time to say I will continue instead of giving up. Given up? Time to start back. The key to it all isn’t failing. The key is to continue going even after falling. You pick yourself back up and you start again. Fell again?

Keep going.

Life isn’t going to stop because you fell. As much as wish we could get a break, or we make a break, life gives us no chance to catch our breath. Then, when we take a breather, we end up living in a “break“. In the moments where we are finding ourselves, take the day off, all activates that we need to recharge ourselves, we stay there.

Are you living in a break?

Find the motivation. Listen to the music that boosts you. Find that small reward at the end of the day that gives you the focus to make it through. Now is not the time to live in a break.

Now is the time to live for yourself.

#hugaplushie my friends

The Year of Hell – 2018

As this year closes, I find myself with quite a few people who have not had a very fond year. Memories of 2018 seem to be cutting deep for all of us with personal and private losses. I know for myself that it was a record year for what I have been through.

In the past year I have lost several family members. Deaths of my grandmother, uncle, and grandfather-in-law hit hard at several points over the year. They were spread out so it was not all at once but baring those loses still bore down on me.

This year, my wife and I separated and were divorced. I cannot begin to describe the amount of pain, anguish, and hurt that I have been through in this process. Dealing with the courts, being there for my kids, and being single all have been overwhelming in all cases. I will say that my Ex-wife has done a tremendous job of trying her best and we are very civil. Pain, however, is part of the process and it does not stop.

As with the above mentioned divorce, I have had to: Find a new job, Find a place to live, Get a car, and rebuild a life. Much in the same way as getting a chronic illness diagnosis, in a divorce you have to find a new you. Rediscovering everything about yourself is quick daunting and can crush you. Having now been through both of these has added a whole new level of understanding. Learning to live and work and even play (when you even can find the energy) is completely different and is amazingly difficult. You find strength you never knew you had. Some days, it just doesn’t happen and you have to learn to accept that.

I have lost around a third of my friends in my life this past year. Be it time, distance, personal beliefs, or something else entirely, I have lost much more then I have gained in terms of numbers. Such losses take quite a toll on someone who doesn’t have many friends. Chronic illness tends to get in the way of making new ones or keeping the ones you have at the moment. I will say that I have seen a few friendships grow deeper and the ones who have stayed have been amongst the best of people. Thank you.

In all this madness of this year, it has been a bad year for chronic illness sufferers. The Opioid Crisis has been one of the focuses of the year. My medical insurance has skyrocketed along with my medication cost. I have written more published articles than all my years past combined and most have dealt with these issues. Depression and anxiety with the growing social issues and personal issues have taken a huge chunk of my spirit and I find it hard to find the faith I once did before.

However, in all of this, I have survived. I use survived as it has been one hell of a battle to make it through this year. I come to the close of this calendar and I live. By reading this, you as well have made it. I am so proud of you and us in general. I want to congratulate all of us for making it. I still plan on being here, encouraging everyone, staying the course on being positive in this valley. I hope by sharing my story of this year has brought you hope that if I can make it, so can you.

#hugaplushie my friends

PS – Props to those who get the title reference.

Holiday happiness fighting

One thing I have noticed during the holidays this year is the treatment of people and employees. Having a chronic illness has made me very aware of people and the feelings they give off. I can sense more of when a person is having a bad day or the tension in the room. I always try and make mention of asking how someone is doing or listening and responding to people.

Every time I go into the gas station or grocery store, I greet the clerk and ask how they are doing. I try and hold a small brief conversation with them. The smiles I and nods I get are overwhelming. Just by the simple act of talking to them has made a difference in my life not to mention what happens after I leave.

I try and hold open the door or elevator for people behind me. Simple things that people get amazed over. The surprised look on people’s faces are shocking. I have even had a few ask why I would hold open the door for longer than two seconds. These very simple acts are so easy to do but it seems that more and more people are abandoning these acts of service.

I find this also translates into modern society in the fact that we have lost the art of finding the good in people. In this day and age of politics that seem to be dividing everyone, I have seen more people abandon being nice and courteous to one another in favor of treating people like a punching bag. I truly believe this stems from the lack of trying to find the good in people.

Finding the good in people can be difficult. I can hear the arguments in my head of why I should not try or bother to find it. “People are just to evil” or “You can’t fix the world” echo in my head but in honesty, I am not trying to change the world. I am just trying to change the world around me. If I surround myself with positive reinforcement, does that not change my own world?

In doing this, what else would change? By just trying to find a positive chord in a person, you are changing the way your brain thinks. Instead of going into a conversation with an attitude of “I don’t like ‘this’ about a person”, you remember they are a good parent, they take care of their elderly neighbor, or they stop and pet each animal they find. You start looking for the good things in this world. You try and find commonality with a person. What would change in this world if more people did it?

Don’t go out and change the world. Start small and change yourself and let that change your world.

#hugaplushie my friends

Getting Sick While Chronically Ill

This article is not giving medical advice. I am not a doctor. This is just observations from someone who has walked a path of illness and the problems encountered. Please consult your doctor before trying any new medication or making changes to them. 

Having been chronically ill for well over 5 years now has been a journey. I have talked about the five stages of grief that you have to survive, the horrors of trying to find doctors that believe you, and even the opioid crisis that has swept the nation and gotten the attention of Congress. One aspect I have not touched on is getting a common illness while being diagnosed chronically ill.

The common cold or flu is debilitating for most people. The coughing and fever run havoc on your body and the aches and pains are terrible to deal with. People take these times to call in sick and take time to recover with grandma’s chicken soup. Others try to prevent it with the flu shot or a Z-pak. The most common option is to stock up on cold medicine and cough drops and power through it while not missing a day at work.

How I wish it was that easy to do.

When you are already taking 5-7 medications (or more), it is very difficult to just grab a box or bottle of cold medicine. You have to check the ingredients in each medicine as you need to compare it to what you are taking to avoid an overdose. I end up having to mix and match different basic medications in order to find the right amount to help. I always cringe when thinking about the liver or kidney damage that is done by the abuse of these medications and since I have been taking mine for many years now, I worry about the stress and damage I have done to my own body in taking what I need to get through each day.

On a good day, I still deal with aches and pains on a level most people would find extremely uncomfortable. While sick with a cold or flu, this pushes my pain tolerance to the limit. Having the wheezy chest and the sinus pressure that makes you fall back into the pillows is hard enough, but add in my fibromyalgia muscle and nerve pain and it hits a whole new level. Factor in that I might not be able to take my normal medication and it just gets worse. Symptom on symptoms will break you.

Common beliefs say that you can just use a sick day and take time for your body to recover. Unfortunately here in the US, that tends to be difficult for many people as sick days for people in jobs in retail, fast food, or the service industries don’t have many days we are allowed to take off with pay. Balancing the options of taking an unpaid day off and the possibility to getting better by not working is difficult. Chronic illness survivors will run into other issues on this as well. We tend to use sick days on particularly hard flare days when your medicine doesn’t help, when your medication has run out and you can’t get more yet, or when your medications have made it too difficult to function and you are in a haze. We tend to be extra cautious in using sick days because we never know “How will I feel tomorrow?”

Having a chronic illness and being medicated as such also invites reinfection. With weaker immune systems due to medications, inability to fight off infections like normal, and body fatigue all factor in to a rolling cold that can last many times longer than a normal person. We take joy in feeling “better” because the cold is gone but in the back our minds we worry about getting it again once it comes back around the office or store.

It can be especially difficult during cold and flu season. I want to say to each and every chronic illness “spoonie” out there that you are a gladiator and deserve the recognition as such. You fight your own body on a daily basis and having an outside invader makes it even tougher. You are a survivor. I see you an I salute you for your bravery and courage for making it each and every day. May you stay healthy this cold and flu season. Those of you who are sick, grab some hot tea and chicken soup, huddle up with your plushie and blanket, and may you get better soon.

#hugaplushie my friends

Remembering Stan Lee.

This is a special post for a special person. As with all deaths that happen around me, I have a saying by Richard Adams from Watership Down:
My heart has joined the Thousand, for my friend stopped running today.

So this post is dedicated to the man, Stan Lee. You brought happiness and stories to life for us. You gave us some of the most exciting characters. You should the world what good there is in humanity and what we should fight for.

I met you once. It was brief and only lasted a few seconds. I thanked you for all the work you had done. You smiled and said it was a pleasure. You were in every marvel movie as a cameo. I now cry in thought of seeing those words we have all dreaded to see on screen, “In loving memory of Stan Lee.”

I speak on behalf of all those who loved comics, thank you.

#hugapony my friends.

#Excelsior

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.

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.

Opioid-Ed

I am angry. I have been watching the opioid crisis “epidemic” for quite a while now. Congress just passed legislation to reform everything on opioids. I have read the plan and I see so many issues with what happened. I am deeply concerned at how it is going to affect chronic illness patients and I believes it shows exactly how the country views mental health and chronic illness as a whole.

 

The money spent is a stopgap. The call was for $20 billion dollars and the bill didn’t even get half that. Quoting the Washington Post, “Yet many public health advocates and experts say it doesn’t offer the one thing truly needed: The massive amount of funding needed to fully combat a crisis that deeply affects rural and urban communities across America.” It goes on to say how little prepared we are for mental health in the medical system. This is not the overhaul we need to fix the broken mental care that so many desperately need. This bill will only help people in the form of a grant which may or may not be available to everyone. Grants are competitive and once used up, there is no more help until more money comes.

 

Congress also had to deal with a little known rule known as Institutions for Mental Diseases exclusion rule. It had prohibited Medicaid from reimbursing substance abuse centers with a certain number of beds (16 or more) for patients with mental illness. Why this obscure rule that is decades old shows exactly how broken and old the system has become. An even bigger concern of mine is who is the oversight on this money now to be released? Are we watching were this money is going? Is it even being used properly? I know close friends who get run through mental health “mills” that don’t treat patients and are more concerned with getting money for the number of patients they process. This is going to feed into this broken system and we are going to see a rise in the number of claims in an effort to get a piece of this pie.

 

In the same thought, the number of opioid addictions are declining, however heroin overdose is rising. The CDC says that in 2017, out of 72,000 overdose deaths, 30,000 were caused by synthetic opioids. This is not prescribed medications. This is not for the chronic pain users. This is a synthetic compound that is in laced heroin and is an illegal drug. Almost all the chronic illness patients I know are responsible people and do not abuse their medication. These are the statistics that are being used against the people that actually need help.

 

I look at these actions and I know it is an important election year. I feel this is mainly a political grandstand and we are showing that we are not serious about reform. Chronic illness patients are once again overlooked and not even considered in the bill. It focuses on how opioids are a gateway to addiction. Congress and the general public view us now as heroin users and we need to be treated for our addiction and not looking for ways to help us except with small mental health improvements. That also shows they believe that chronic pain and other similar afflictions are viewed as mental health issues and not a disease. We can view addiction as a disease but not something like Fibromyalgia, that is all in your head.

 

Please senators, congress, anyone in government, come live in my head or body for a day. I have never wanted to do this before but I wish you could feel the pain me and so many others are in daily so you could understand.