Friday, June 23, 2017

The Fight Ableism Prayer

Sometimes I get really tired in my fight against ableism. 

It's hard especially when our government makes it clear they don't care whether we live or die. One of the biggest ways they show this isn't just with the AHCA, but with how we are treated when we try to stand up for ourselves.

In the fight against bigotry, we may lose sight of why this matters and why we need to fight for ourselves and our future. People without chronic conditions or disabilities generally aren't prepared to hear about the issues we face, especially because equality can feel like discrimination when you have privilege.

I developed the prayer below based on the Lord's Prayer to help reinforce my inner strength to fight the ableds. I hope it helps you, too.

O, universe, all around us,
Help me fight the ableds.
Help them to listen more than they talk.
Let them learn how to be allies,
instead of harming, assuming, and speaking for us. 
Give us this day our daily meds, physical therapy, and grounding exercises.
Help oppressors understand our tone,
As we don't tone police ableds and other perpetrators of oppression. 
Lead us not towards ableism and harm in our communities,
But help us identify the -isms and -misias therein. 
Disability is a naturally occurring state.
The future will be accessible.
Nothing about us without us.

Monday, June 12, 2017

Mental Health and Chronic Pain in Childhood

Before I start this post, let me mention a few things - there's a lot of talk of dying early, suicide, abuse, etc, in this post. I am fine - simply describing much of how growing up with chronic pain conditions can be and, indeed, was for me.

One of the things that I've struggled with, starting as a child all the way up to today, is the combination of chronic pain and death. Indeed, it's one of the big issues in the chronic illness world - we often fail to address how mental health can play with chronic illness and pain. 

About a year ago, I came across the Tumblr post below:

Tumblr post from user Bakrua (black text on a white background): Being mentally ill + suicidal at a young age (before 18) is. strange, because you grow up with this idea that one day you'll finally snap, turn off, be brave enough to kill yourself, so you don't really plan-for the future. adulthood - further life, it isn't for you, nor do you feel included within the future of it. it isn't.. it isn't part of your life plan" new paragraph: "and then before you know it you're 18 and you're an adult but you never thought you'd get this far and sure it's great that you're still alive you guess but also. you feel so alone + lost in a world you never expected or planned to be a part of."

It really hit home for me.

When I was young and we didn't know what was going on with me, I made my peace. I was sure that I was going to die soon and I was somehow less scared of it than I am now. 

I think I was also more at peace with the idea that I was in no way in control of my destiny. I certainly wasn't a godly child but understood more about how my physical body is more in control than my brain. Obviously, I would have been sad about passing away so young. I would've missed all the time I've gotten to spend with my sister, the people I've come to know, and all the animals I've loved and taken care of.

Since I was so prepared to die early, I didn't really plan for later in life. Even after the SJIA diagnosis, - I knew that this was a scary disease from what I had read as a seven-year-old with a dictionary beside me. Hell, I figured that if my SJIA didn't get me that my abusive mother somehow would. She certainly was good at pushing buttons to help people make decisions that weren't the best for their health. But that's a story for a different time.

I knew that other people didn't deal with exactly what I did. Still, I felt as though I was handling this very poorly compared to how others might. It's a very common thing for kids with chronic pain to think. A few years ago, I read a book that discussed fibromyalgia in children and nearly every kid expressed being 'bad' at handling pain they thought everyone dealt with.

It's one of those initial ways we experience ableism - we think we do poorly at handling issues.

In reality, just like with people of any age, children are just trying to make sense of what's going on in their bodies and their lives. We can't control what's happening to us in a lot of ways, both because of our ages and our illnesses. Many adults don't take what we say seriously, either, which can further issues like depression - especially if we're isolated and abused in our youth as I was.

Now I'm nearing 30 and I have no idea what I'm doing. Sure, some say that's what being an adult is like, but not in the way I feel it. I have few plans because I just never thought I'd get to be this old. Because of T's struggles with depression, he's in the same boat. It's not easy for either of us - and can cause issues within our relationship.

See, the way I grew up affects everything in my life - how I handle my health fun, how I treat others, relationships, etc.

If you have a child who deals with chronic illness, it's imperative that they begin to see a therapist to work out their feelings. They need validation outside of the family as well as a safe space to vent. They also are going to need a lot more help than any parents, no matter how awesome, can give them. A therapist can be a wonderful person for further mental health referrals.

If you live with chronic illness, whether diagnosed in your childhood or later in life, please see a therapist or other mental health professional. It can mean the difference between life and death.

Tuesday, June 6, 2017

Review: Liberty Lixir 1000 mg CBD Tincture

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

Today I'll be reviewing the Liberty Lixir Ultra 1000 mg tincture from Liberty Lotion.

This tincture is an isolate which means that it's gone through a very rigorous process to remove anything other than CBD from the oil. Like with just about every CBD-only product, there is no THC in this.

According to the Liberty Lotion website, each pump from the bottle gives you close to 7 mg of CBD oil - 6.7 mg to be exact. They talk about how the most effective dosage is different for everyone but mention that around 3-5 pumps every 4-6 hours seem to be about the average.

What you do is pump the oil under your tongue and wait as long as you can for it to absorb. In addition to CBD oil, this contains Vitamin E and coconut oil. I don't really like the taste of coconut oil, so I'm not always able to wait the recommended ~60 seconds. It also means I don't necessarily love to swallow the remainder of the oil that doesn't absorb.

I remedied this by following up the oil with a non-water beverage. The oil you swallow has to travel through your GI tract anyway and it likely won't give too much benefit... so I'm not worried about following it with soda or anything else really. 

Okay, with all that out of the way... how did this work?

Generally, when I'm dealing with a fibromyalgia flare-up like I have recently, I can't even wear clothing. I sit in a fleece blanket on our soft couch and try to make it through the day. I'm lucky if I can shower maybe once a week, depending on how long this flare-up goes. Everything hurts from head hair to pubic hair to anything touching my skin. I'm unable to sleep so I'm up at all kinds of weird hours instead of sleeping in bed with my husband.

I really freaking hate not sleeping by T when we're both home. It's something that is so out of my control and something that my diseases dictate. I always worry about resentment or loneliness. For a while, I just couldn't even try to sleep in our old bed. I would come in and read him a story or listen to a podcast and then head back to the couch once he was asleep.

After starting this tincture, though, I don't want to go anywhere without it.

I have slept in my bed next to T every single night. I'm crying writing this because it's been a long time since I made it through a week sleeping in our bed.

The fact that I've been able to sleep at all has contributed to this flare being less severe than those I usually experience. 

On top of that, though, I'm being able to go do things. Maybe wearing clothes still isn't the most comfortable, depending on the dose I've used, but I'm able to do it instead of breaking down in pain and crying. I've been able to keep lunch dates with friends and plan others because I have some semblance of a life back.

CBD, in general, is something that I love, but I have not ever tried something that impacted my life as much as Liberty Lixir.

I mean, I'm crying writing this right now. I have control over more of my life than I've had for years. It's no surprise that this, then, is pretty much my favorite product I've ever tried - EVER.

Oh, and did I mention they also have a reward system? There are so many things you can do to earn rewards, too!

You can redeem 500 points for $10 off, 1000 for $25, and 2500 for $75.

I've already ordered a few of their topical products and am super excited to try them out soon! I'll definitely report back.

Want to snag something from Liberty Lotion for yourself? If you use code 'NSSD' you can save 10% off your order at Liberty Lotion!

Make sure to check out Project CBD's Beginner's Guide to CBD.