Being Thankful in the Midst of Chronic Pain.

November is a month (typically) filled with posts of gratitude and daily updates on what people are most thankful for, but when you have chronic pain/illness Thanksgiving can be very difficult.

I am not going to sit here and say that being thankful is easy… it is NOT. I’m lucky enough to have things in my life that keep me grounded and that I am extremely grateful for. But more often than not I feel quite the opposite. I grumble at the prospect of another medical test, I moan about how desperately I want to eat the foods I used to be able to eat, and I cry for the life that I “should” have had before my body rejected me. I don’t like feeling this way, but I recognize that it is my human nature to want something better than what life has given me.

I used to suppress that part of my personality. I would always put on my mask of gratefulness and fake my way through life. There are a lot of times I still have to do that (I work in customer service, I have no choice), but I refuse to be an artificial version of myself with those I care about. They deserve better and so do I.

Some people can’t take it. There are people that look at me and all they see if that bubbly girl that used to have so much life! Now I’m always so “cynical”, when did this happy person get so cynical?! A- I’m not, I just roll with what life gives me. If life gives me one piece of crap after another, I can’t be held responsible for my attitude. B- I have always been this way, now I’m just not faking my way through my day.

Does that mean I’m never grateful? No, of course not. As I said above, I have so many things to be grateful for and I am, very much so. I just find that when in constant pain, it can be difficult to express properly. Just typing a daily “today I’m thankful for…” post feels empty. I’m in no way saying people shouldn’t do those posts! If that is helpful for them, go for it. For me, it’s just another thing I have to fake my way through, I can’t do that anymore.

Every day my gratitude is expressed in the things I do, not in the words I say. I tell my kids how much I love them. I thank my husband for all he does for me on a daily basis. I work until I can hardly stand it anymore, because I love my job and I appreciate the opportunities it provides me. I do whatever I can for my extended family, because they’ve done so much for me.

I’m blessed to have people in my life that care about me, I know this. I wish everyone could experience that love. I also have pain, I do not wish that pain on anyone… ever. So when I say I’m grateful for anything, it is huge. Monumentally huge! My body is literally fighting me, every single minute, of every day. I will not make empty promises, nor will I pretend to be grateful for what I do not have.

For those that do not have someone in your life that helps you, there is still hope. There will always be that one thing to get you through. Simply find it. Grasp on to it and do not let go. Don’t let anyone push you to be anyone or anything you’re not. If you’re in pain, never let anyone invalidate that feeling. You’re allowed to express how you feel! You are important. You. Are. Important!

Finally, I am thankful for you… really.

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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.***

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.