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

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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.

A Perspective on Life

I have come to realize that every person, every being on this earth has a unique perspective. Everyone’s view point will never perfectly match another’s. Looking in the world of politics this is very evident. We see huge clashes of personalities and perspectives that make it all appear that we are all so different. We see each other with rose coloured glasses, each with a special prescription all our own.

We can see the cashier at the grocery store. This lazy bum who looks like they are just here until they get off. They have such an attitude and just seem to want to go home. They hate being here and never want to help me. I pulled out a coupon and I think they rolled their eyes at me. They are probably just waiting to get off to go smoke drugs. Better double check and make sure they didn’t steal my money.

Or.

They seem to be working the steady hours dealing horrid people and still manage to find a smile. I say “Thank You” and I see their faces light up at someone looking at them like they are human and not a robot. I see a mom of 2 working this and 2 other jobs to make ends meet. I see the college student who is just trying to pass finals. I see the older lady trying to supplement retirement.

Perspective.

We have the gas station attendee who smells weird. He gives me a creepy vibe every time he looks at me. God, why can’t he just learn English like the rest of us? I bet he is here illegally. Why is he here? I just want to fill my car up in peace.

Or.

He gives me a smile every time I walk in the door. He works hard, all year round, even on holidays when everyone else is closed and I forgot I needed milk. He calls me by my first name which he has remembered since the first time I met him. He got here by chance and is making the most of the American dream.

Perspective.

You hear the screams of why you am not making America great again. Still others block because we don’t agree. How can you not vote for or against people? How dare you not vote because you don’t agree with either side!  How can you not see the breaking of tradition? Why are you mad at this group and not mine? Have you not seen what the other side is doing? How dare you have an opinion that differs from mine? You must be a fascist. You must be a Republican. You must be a Democrat. What, you are neither? Then you not agreeing lost us this vote.

Or.

You see the over politicized. You see the people who are making money making rules for other people to follow. You see the grandstanding for the image. You see people who differ from your own views and want to know why. Not to change their mind, but to open yours. You stop looking at the labels and start looking at the people. You see real people with real opinions about real lives. Everyone has a viewpoint and voice, regardless of background. You see people agreeing to disagree and still able to hug each other afterward. You see compromise.

Perspective.

I feel that if we could start viewing the world through each other’s eyes it would change a few opinions. Elders remembering what it was like to be young and stupid. Teens remembering that the elders were teens once also. People standing in each other’s shoes just for a minute and seeing what life is like through my rose coloured glasses, knowing they would never fully understand but at least trying. Would we see  a difference?

Would you try?

Perspective. It’s the damnedest thing.

#hugapony my friends

Labor Day quicky.

I apologize for missing the date yesterday. I had something planned but it did not get done in time. I would like to wish everyone a wonderful labor day.

In light of all this day brings, I would ask each one of you to treat everyone with an extra special respect. Thank each cashier you see today. If you are shopping the sales, thank each person you interact with. Hold the door open for the person behind you. Be kind. Be calm. Be curious. Some of us do not get labor day off.

Be the joy you want to find in the world and the joy will find you back.

#hugapony everyone

Where Has the Happiness Gone?

I have been writing in this blog for 4 years now. I have shared thoughts and opinions and feelings. I have seen people grow and learn. I see people fail and break. I have seen a world of change and a changed world. I have also seen a change that scares me.

Where has all the happiness gone?

I see people, more often than not, getting nasty on social media. I see folks attack and fight bitterly over social and economic systems. I have seen a great number of people break off friendships and cut off loved ones because of who they voted for in the last election.

I ask you again, where has all the happiness gone?

Where is the brotherly love we used to feel for one another? Where is the rebuilding of America after 9/11? Where is the gathering of help for tsunami victims? Where is the love of Pokemon Go that had everyone, young and old working together towards a common goal? What has changed?

What are you doing to keep the happiness here?

How have you acted in a kind fashion lately? What acts of kindness have you performed? Did you hold the door open for that person running behind you? Did you let that car get over a lane in heavy traffic? Did someone need that quarter you have in your pocket? What smiles have you brought to others faces?

What have I done to change the world for the better?

Did I do enough today to make a difference? Have I smiled at enough people to show that I care? Did I say hello enough times in the elevator to make someone feel welcome? Have I fed the dogs for my friends? Have I encouraged my daughter enough about school?

Happiness is not gone from the world. We just have forgotten to spread it around. The we spread it, the more it comes back to use. I ask you all, dear readers, to consider who you interact with today, tomorrow, next week. See who’s lives you can change for the better.

Don’t let the happiness disappear.

#hugapony my friends

Quick post: Everybody smile.

This has been a busy time for me. I have started a new job that I love and that is strange for me. I have had to scramble a bit to get everything together. I did want to share a quick observation.

I have seen on more than one occasion that a smile can make all the difference. I have been in a bad mood and making myself smile made a change. It did not make everything magically better, but I the muscle memory triggered a response connected to happiness. I still felt the positivity spread through me. It was a great feeling.

People will also watch out for you. When you walk into a room, smile. Show that you are, at least outwardly, in a good mood. A kind of “Fake it till you make it.” People will unconsciously take notice. Part of our nature is to evaluate others and a situation. One way to make a positive impact on others without effort is to smile when they see you.

Sometimes all it takes is a smile.

#hugapony my friends