An Open Letter to President-Elect, Donald Trump (from a disabled citizen).

We’re on edge. There is really no way around it, people with disabilities are worried about their future and understandably so. This has nothing to do with partisanship, or who voted for who. We recognize that you have won the electoral college and will become our President in January. This is about so much more than that, this is a plea for recognition.

Our plight is two-fold, we need access to essential healthcare and protection from ableism.

Ableism has always been a problem, but has just recently started getting some attention. It encompasses an over-all belief that people with disabilities are not as “good” as an able-bodied person. In Nazi Germany, people with disabilities were killed just for being sick, but here in America it is much more subtle. From jobs that discriminate based on physical ability to harassment in a parking lot by the uninformed. We struggle to find a compromise between wanting to be well and wanting others to accept us the way we are.

Many people with disabilities are dealing with incurable illnesses, chronic conditions that they have no control over. Sometimes they end up in a wheelchair, sometimes they’re able to blend in to the fabric of society without notice (sometimes it’s a little bit of both). Invisible illnesses outnumber the visible. So many people deal with pain on a daily basis and find little to no compassion or understanding, even from friends and family. I am a person with an incurable illness, and I know there are millions of us (yes, millions) that are begging to be heard, but just don’t know what to say.

Most of us have spent years going to specialists, spending every dime we earn on doctors that try to help, but often can only prescribe medication to lessen the pain. We’ve tried physical therapy, holistic/eastern medicine, vitamins/supplements, and everything under the sun to find relief. But in the end, all we can do is live with what we’ve been given. Some people find medications that relieve enough of their pain to allow them to function on a day to day basis, others find that medical marijuana is the only option.

Lately there has been a “crack-down” on pain pills and the doctors that prescribe them. The risk being that many people that start on opioid medication eventually turn to heroin. Unfortunately, this witch hunt has turned on its heels and we’re now seeing that when patients are taken off of their opiates, that is when they turn to heroin. So with all the doctors being forced into cutting out their pain patients medications, there’s a huge influx of drug addiction. Not the other way around.

Another option for chronic pain patients (like myself) is medical marijuana. Several states have just legalized it, but there are still too many that it is considered a crime. Based on hundreds of studies and tons of research, it has been proven that marijuana/cannabis causes far less harm to the human body than most medications that are passed by federally funded corporations. People in pain need to have access to this natural medication, it is as simple as that.

“Obamacare” is a loaded topic, one that often divides even the closest of friends. Personally, there are aspects of the Affordable Care Act that I like, others that I don’t (at all). But the importance of making sure everyone has availability to medical treatment is the real issue and should never be overlooked just because of party affiliation. It is well known that in your speeches and campaign promises, you said you would “get rid of Obamacare”. First and foremost, we need to stop calling it Obamacare. That is a nickname and not official in any way shape or form, let’s call it what it is, The Affordable Care Act. Then, let’s make it actually affordable! Assign a team to the task of making it work for us, for everyone. It CAN be done.

No one should have to fear losing their health insurance just because someone else has taken a political office, but that is the reality many face right now. It is up to you now to make sure that does not happen.

Finally, I want to say this… please be a good person. This position is about so much more than just being a powerful person, it has to be about being the right person. You claim to be a person of faith, I want to believe that is true. I want to believe that you will stand up for those that cannot stand up for themselves. I (and many others) just have not seen that in you as of yet. It is time to be “presidential” and calm our fears. ***Be the good.***

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Warning… Spoon Shortage! Enter at your own risk!

Anxiety is a a$$h@le!!!

That may sound really weird to people who don’t suffer from chronic anxiety, but those of us that do will get it. Sure, everyone gets anxious. Everyone feels that pull of suspense that only comes from being terrified of what might happen. But for those with chronic anxiety, it is like a living being that squeezes the very life out of those that experience it day to day.

One of the biggest struggles for me this year has been my overwhelming restlessness about everything going on in my life and around the world. That may sound very broad and maybe even somewhat whiny, everyone is apprehensive about world events. I’m talking about the ingrained need within myself (and so many others) to fix/control things. These are thing I cannot fix! I can do my part. I can  advocate for people like myself, I can vote, and much more. But what cannot do is control the outcome, and it drives me crazy.

Many people with chronic anxiety are considered “neat freaks” or “OCD” (which is misleading, because Obsessive Compulsive Disorder is it’s own thing which anxiety can often be attached to).  We want to be able to keep our “world” in a little bubble and defend it from anything that might make it pop. Unfortunately, that doesn’t always work out too well. Ok, usually doesn’t work well at all.

This approach keeps us at a constant state of readiness, a perpetual tension that can be torn apart by the slightest change in our environment.

For me this includes a plethora of medical changes, worry over my sons health (it looks as though he may have a similar condition to me, on top of his other problems), worry over the rest of my husband/daughter’s health, and strained relationships with friends/family. On a global and national scale, I’m sure my concerns are similar to everyone else.

The election (both for President and my local races) has been so polarizing! I can’t get on any social media without seeing attacks from both side of the aisle. I see family members supporting hate, I see friends attacked for expressing their views, I see stories of harassment, and just the worst of mankind (this does not mean just men, it encompasses everyone). I’ve had to unfriend and/or unfollow far too many people this past year!

I’m very thankful it will be over soon, but I recognize that this election has forever changed our society. We’ve seen each other for who we are, the dirty underbelly of politics has exposed the reality we have kept hidden for years. Our fears and prejudices are out there for all to see, no matter which candidate we support!

But it’s not just politics that have me breaking apart from the inside out.

Hate seems to be a way of life now, and it terrifies me!

There is so much hate for law enforcement, African Americans, Hispanics, refugees, even victims of crimes! Where have we gone wrong?! Why is our automatic response anger? Why do we immediately gravitate to the worst possible action? Hate and fear are in control, not reasoning and compassion.

One of the biggest contributors to my extreme anxiety breakdown has been the stand-off at the Dakota Pipeline. I am part Native American (which a LOT of us are, but the side of my family it comes from has an amazing history and I am passionate about preserving it), so the desecration of Reservation lands really hits home for me! If I could physically and/or financially afford to be there protesting with them, I would! I’ve signed petitions, I’ve checked-in, I’ve shared, and I wish I could do more. Just thinking about it makes my heart hurt.

Another source of anxiety for me, has been accepting my physical limitations. In the summer I took a trip to see my sister, niece, and nephew (and great-nephew). It was extremely difficult. I miss them beyond words, and it was my first time meeting my nephews beautiful son. But I realized that travel was just not in the cards for me anymore. Or if I do, it will have to be with significant assistance. I can’t just hop in a car and drive 12-14 hours anymore. I can’t go to the beach and expect to be able to walk the next day. This is my life now, no matter how much people doubt that reality.

This fact hit home this past week as my niece married her long-time boyfriend (that I had finally met when we went to visit this summer). I couldn’t go and it’s eating me up inside! I’ve always had a special bond with her, even across the miles. I desperately wanted to be there, but I just couldn’t.

I am also very nervous about the infusions I am starting next week. I was supposed to start them a month ago, but miscommunication regarding what vaccinations I needed before treatment pushed the time frame back. I desperately want them to give me some relief, but the realist in me is trying to keep me grounded.

There’s PLENTY more things I could write here, but I think that’s more than enough to get the big picture.

My post really isn’t just a huge vent (even though it is a perk), this is a confession that people with anxiety are not just stressed. We take everything going on in our lives and internalize it. Our struggle is more than just day to day dears, it is an all consuming ball of fire that lives in the gut and engulfs us when the world closes in.

So today, I will breathe and hope the fire subsides.

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.

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.

What does “Ableism” mean to me?

Ableism (officially means)- a set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities. But what qualifies anyone to asses these “practices and beliefs”? How has it that ableism has gone unchecked for SO long? This is more than just discrimination against disabled individuals, this is about able-bodied people going out of their way to find fault in our disabilities.

It may not seem like it, but one of the worst forms of ableism is unwanted/unsolicited help. “Help” is a very vague term; sometimes it can mean physically helping someone with a difficult task, this is not the kind of help I am talking about (although there are cases it can be the case). I’m talking specifically about the times that able-bodied people suggest they are helping someone with a disability by giving them “advice” (whether we want it or not).

Let me make this VERY clear… not ONE case of invisible illness is exactly the same. NOT ONE! So, we don’t care if you know someone else with our condition that magically got better (insert enormous eye-roll here), or if you read an article one time that said if we did……. all our pain would disappear. You’re not helping! It’s ableism, whether you are meaning to or not. You’re assuming to understand how we feel, but you don’t, you can’t.

So, how does this factor in to the official definition? Perfectly, that’s how. Unwanted/unsolicited advice is both a belief and practice (on the part of the advisor), because they’re assuming the disabled person does not have the ability to properly care for themselves. When in fact, most people with disabilities are significantly more versed in their illness than most doctors (not necessarily specialists, but it can feel that way sometimes). When anyone without disabilities suggests that they “understand” what we’re going through and offer advice for potential cures, it is like a knife in the back! Unless you are my doctor… I don’t want to hear it!

advice

Another significant issue is people asking if we’re feeling better. No, we’re not and that’s a horrible question! Better than what? Better than when? We’re used to the common “How are you feeling?” it sucks and we have to lie every time, but at least we have an answer for it. Some of us completely lie and say “I’m ok” or “Good”, others say “Fine” and leave it at that. Personally I’ve found that saying “I’m here” is a good way to stop the conversation, without making anyone too uncomfortable. But when someone asks “Are you feeling any better?” I cringe! It’s ableism to assume that I will get better at all. “But don’t you WANT to get better?” I do, of course! But I have an incurable disease… this is not up for dispute. Think before you speak.

If we want to complain, we damn well are allowed to complain! If any able-bodied individuals out there think differently, see ya. Does this mean no one else can complain about anything else, of course not! But do NOT compare your headache to my chronic migraines. Never compare your back pain to my dislocated ribs and curved spine. Don’t say “I know how you feel” until you’ve been diagnosed with something comparable. Period.

I’ve been a little harsh today, more so than usual, but for good reason. The disabled community deserves to be heard and have our rights upheld! Let’s put an end to ableism!!!

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