State of the Body

This is NOT a “political” post… really! It is going to seem like it, and I’m sure there will be people that disagree with my views. This is actually a “call to arms” post! These are things that need to be said and often don’t because people are afraid of political backlash. This is all about being informed and making the best choice for our future.

The title of this post is “State of the Body” because we need to step back and really look at how people with disabilities are treated in the United States. There’s not going to be any change for the better, if we don’t make the conscious decision to set aside our party affiliations and vote for people that will fight for our rights.

This is NOT just about who will be president!

Every office, from Governor to City Council should have a stance on disability rights. It is tasked to us to be aware of their policies! If we are not informed, we will never see change. We will never find the help we need.

Look up your local candidates, see what their platforms are… then search beyond that. If you’re questioning what a particular candidates stance on disability rights is, call their campaign. We don’t pick a doctor based on how they look, we choose based on who will help us the most. So, don’t choose a leader based on whether they’re Republican or Democrat, when a little digging may show you the other will do more for you.

As far as the presidential race is concerned, I will not tell you which candidate to vote for. That is not my place. I would urge you to please do your research! Don’t be afraid to vote for who you believe in and the one that will do the most for your rights.

People with disabilities have been ignored for far too long. I truly hope that the next round of voting will enact some real changes and bring the issues we face into the light.

What should you look for?

  1. Do they even have any policies set aside for people with disabilities?
  2. Do they plan to restrict important medication for people with disabilities?
  3. Are any of their policies going to inhibit people with disabilities?
  4. What plans do they have (if any) to improve the lives of people with disabilities?

There are very likely more questions that can be asked/answered, but these (I have found) are key to making the best choice in a politician.

I honestly hope that this has been helpful. I don’t want to create division, or spark debates. This is a good rule for anyone with something they feel very strongly about.

So please, be informed and vote.

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Monsters Living Among Us and Feeding on Our Pain.

*Sits down at the campfire, with flashlight in hand*

Are you ready for the scariest monster story you’ve ever heard?

Over the course of thousands of years, an evil has been growing in our world. It invades people’s bodies, it feeds on their pain and fear. It spreads throughout the body, forcing constant agony on the host. That is how it breathes, that’s the energy it feeds on. So the person slowly declines and suffers an unseen struggle. Others do not (and often cannot) believe them. For many years they were accused of being monsters themselves. They were cast out as demons, or tried as witches. All while the monster inside them feasted on their misery. In later years people assumed it was something that individual could eradicate with herbs and special foods. When in fact, the only relief came when the pain subsided. Sometimes they could reach out to others and find help, but not everyone believed the pain was real. In many cases the monster was so strong that someone infected just couldn’t battle it anymore and took their own life to stop the pain. Even still, people without the monsters didn’t believe. They looked at those in pain and saw only a person, not the struggle inside. These monsters cannot be killed, but they can be quieted. Their food supply can be cut off, by finding people that believe the pain is real and are willing to help them the way they need to be helped.

The scariest part of the story is that these monsters exist, and they occupy millions of people all over the world. They come in the form of auto-immune disease, chronic pain, genetic disorders, and so much more.

We fight every day against the monsters! All we want is to be heard, and to have people believe our pain is real. We want research on pain medication that will once and for all HELP people in pain. We need to stop assuming everyone that takes pain meds are drug seekers. We need to recognize the impact of pain on mental health and take this in to account during treatment. We HAVE to do better! We HAVE to BE better!

We can’t let the monsters win.

When exhaustion takes hold and nothing helps.

I have had an intense week. Doctor appointments, teacher conferences, more doctor appointments (for my kids), and a much needed (but draining) haircut. I even had the whole week off to take care of everything I had to do, but I still found my strength insufficient. To the point I laid down yesterday for a nap and four hours later couldn’t imagine getting back up, my stomach had other plans though. After lunch, I went back to bed and slept more. Do I feel rested today? No way. I still feel like I need to sleep all day, but I’m back at work… so no nap today.

I get so tired (pun intended) of people telling me how to deal with my fatigue. I’ve heard it all! “Get to bed earlier”, “take … supplement”, “drink … you’ll get the best sleep ever”. But it’s not that simple! Even caffeine is not a cure all, in fact it’s really bad for people with chronic pain. It’s a pain stimulant! Have you ever had a headache and took caffeine to get rid of it? That’s because you’re body is craving it and going through with drawl, so drinking it takes the pain away. But it doesn’t last. I had to ween myself off caffeine several years ago because of chronic migraines, and it really did help. I’m not here to say “Don’t drink coffee!” I’m just addressing the fact. Anyway, I’m getting off point.

I wish we still had nap time. Remember in kindergarten? We’d roll out our mats and lay down for a while, some of us would sleep, others would talk and play around. It’s truly a lost art form! Resting has become almost a joke. If an adult takes a nap, they’re labeled as lazy. When in reality, it’s so good for us! Don’t get me wrong, there are some people that can’t handle naps. If they sleep at all during the day, they can’t sleep at night. I get that. I could stay up all day long and still not sleep at night. But then take a four hour nap some other day and go to bed early that same night. I would just love it if naps were more widely accepted as a therapeutic tool.

Even still, naps aren’t the end-all-be-all answer to everything. More studies need to be done on insomnia and chronic fatigue syndrome! Sleep is such a vital part of everyday life, to go without it is debilitating. It’s why we have such a huge market for coffee and energy drinks, no one is getting enough sleep! Add to that all the people with auto-immune disorders and other invisible illnesses, there’s no end to the impact lack of sleep has on our society.

This post probably sounded like rambling and I apologize for that. I’m very tired.

Why do most people think everyone in a wheelchair is paralyzed?

During a recent conversation, it dawned on me that so many people in wheelchairs are capable of walking/standing, but are afraid to because of what other people will say. There has to be a way to bring awareness to this and stop the fear of persecution.

There is this concept among the able-bodied that anyone in a wheelchair is paralyzed, which is incredibly narrow minded. But think about it… have you seen someone in a store using the electric scooters and then stand to get an item off the shelf. How does that make you feel? When you see someone in a handicapped spot (even with a placard) walk into the store, do you automatically think they’re faking or using a tag that doesn’t belong to them? Think hard, we’ve ALL done it at one point in our lives.

The truth is that people with invisible illness often need assistance, but not necessarily every day. That person you see walking in to the grocery store could very well have been completely unable to walk the day before. That person using the scooter, most likely is having a bad pain day and wouldn’t be able to get their errands done if it weren’t for the help. Often reaching for something off a high shelf can be just as painful as walking around the store, so standing to get it is the better option.

Yet… we shy away from it because of all the judgemental stares. We will park without our tag, just to keep people from being cruel. Bullies come in many forms.

Then there are those of us that use a wheelchair on a regular basis, but are NOT paralyzed. We can stand if needed and sometimes sitting all day is just as bad for us as walking. We may have to get up just to stretch, but that’s not what people see, so we confine ourselves to the chair and pray for comfort. That fear is brutal!

Personally, I use a wheelchair any time I would have to stand our walk for a long time. If I don’t, my knees and hips give out and I’m considered a fall risk. So I have to use the scooters at stores, especially if I need several items. Otherwise my pain will be too much, even with my cane. My manual chair is not as helpful in stores, so the scooter is the best option. I’ve started using my cane to get in to the store and keep it with me on the scooter. This is no easy task! But it is a visual for people that I really do need mobility assistance.

What NEEDS to happen is an awakening of understanding to the struggle of people with invisible illness! We need to dispel the myth that everyone in a wheelchair is paralyzed. Yes, some are… but many are not! To judge someone without knowing their circumstances is plain and simple bullying. It is ableism and needs to stop (even among those with disabilities). It is not our place to judge.

(On a side-note. If you’re not disabled and take up a handicapped spot just because the lot is too full, or you just don’t feel like walking that far… stop it! Seriously, leave those spots for people with disabilities. Even if you’re just running in somewhere “really quick”, that’s not a good excuse. You never know when someone with a real need will drive up.)

So, don’t be afraid to be yourself. Stand to get what you need, stand to stretch, and most importantly stand up for your right to stand.