Big, curvy fun news

I’m going on an adventure! Okay, maybe not nearly as exciting or dangerous as Bilbo Baggins, which is what I’m now picturing, but still. It’s big. So I’ve got a spine, like everyone else. But mine is a jerk. It decided early on not to go the traditional route of straight. It decided to curve. And then, to keep things fun, it decided to curve again. It’s not as fun as it sounds. Here it is below, as of March, 2020.

Maybe that’s not the best picture, or the best description. But I don’t know how to download the x-rays off the fancy cd the doctors office gave me, so this is what I’ve got. As for descriptions… Yeah I’m not much help there either. I can throw around big words like idiopathic scoliosis and osteoarthritis but I’m still not 100% sure what terms are correct for my actual condition. I do know that I have scoliosis. I know that I’m the only one in my family with it, and so far my kids look great so I don’t think it’s hereditary… I have double curves, and the doctor estimated about a 70% thoracic curve, and about a 50%….. um… bottom curve. Or maybe thoracic is the bottom. I don’t know, I also have ADHD and I don’t remember these things.

20200310_123419 — these hips don’t lie. straight. they don’t lie straight.

Quick backstory in case you’re new here. So my spine has been a bitch for my whole life. I started having pain when I was about 4 years old, and it’s done a hell of a job getting worse since. I was diagnosed at 12 by a chiropractor, who did his best to convince my mother to not EVER take me to a doctor because he swore he could fix me. (hint: a chiropractor cannot “fix” scoliosis, also maybe not ever seeing a doctor is a major reason I don’t know much about my own spine.)

Anyway, about that adventure. I have finally gotten to a point in life where I can actually do something about this. I saw a doctor years ago and although she was extremely empathetic and wanted to help, there was nothing she could do. She showed my x-rays to the surgeon in their office and he said there’s no way he would touch me. They recommended surgery immediately and begged me not to bother with anyone in my state. I needed a specialist. And honestly, I agreed. But life happens, another baby happened and I had to wait.

Well, I just had an appointment with a new orthopedist for a second opinion, and he agreed wholeheartedly. He said yes, I need surgery, and also had the same conviction of sending me out of state. Also said I needed not only a specialist, but like a special specialist, in the most special of places. He gave me some names of surgeons he recommended and wished me luck. I’ve looked those guys up, and my husband and I have agreed on who we want to contact. He’s the best of the best, and has fixed much worse cases than mine. So I’m about to schedule an appointment to see him.

20200310_123557 — Last weird crooked bone picture I swear

So I say all this because this is a huge life-changing thing for me, so obviously I will be blogging, Twittering and Tik Toking about it. I’m passionate about sharing my crazy, so I might as well share my healing too. I will be posting updates along the way, and I’ll probably even take some tearjerking videos when surgery time comes and I see myself for the first time as a cyborg. Or learning to walk again, but like, standing up straight. Looking in the mirror and not seeing a hunch in my back. Oh god I’m tearing up already. So I hope this will be as fascinating to everyone else as it is to me, and lastly, quick shout out to my husband, who is busting his ass to make this happen for me. Love you babe.

Pain and Parenting

A lifetime ago, when I imagined my life as a mom, I honestly thought I would be the most soft, loving, nurturing mother there was. And three kids later I am those things, when I can be. One thing I didn’t factor in, that I never would have imagined would play such a huge role in my life, was pain.

Like it or not, I’m a different person when I’m hurting. I have much less patience, less focus (which is pretty scarce to begin with, thank you ADHD), I get irritated easily and I’m much more likely to raise my voice. None of that really screams soft, loving and nurturing.

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As I write this, I am bundled up in my biggest blanket, desperately trying to stay as warm as possible while I take my painkillers and pray they kick in before my kids wake up. Winter is coming, and besides being a pretty awesome GOT reference, it rings true for me in acting as a warning. But instead of whitewalkers, winter brings me a promise that I will hurt more. The colder it is, the worse it gets. And if there’s rain or snow, that’s when it’s at its worst.

And although I know that kids are resilient and forgiving, and I apologize often when I get too angry, that’s not enough. They may forgive me, give me hugs and kisses and tell me they love me. But their behavior changes. My daughter is very sensitive and gets even more so during these times. My son expresses it outwardly, in explosive behavior. When upset, he screams or throws things, runs out of his classroom at school. Once in a while he will even hit another classmate or his sister. And although some of all this is because of my sons autism, and my daughters ADHD, I know I can’t lay the blame solely on that.

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I’m constantly trying to be better, but the mom guilt never ends. So tell me, if you deal with any sort of chronic pain, how does it affect your parenting? And if you’ve got any tips, feel free to share with the class, because I am very much still learning.

The diagnosis that broke me

ashamed

As you may know, I’ve got a laundry list of issues. I am only 28 years old. This means that I’ve been in pain for 24 years. I’ve been depressed for 18+ years. Anxious for 25 years. Add a big ole etcetera in there because this could drag on. But I’ve always dealt with it. Not in an inspiring, healthy way I’ll admit, but I’ve survived.

Then came the winter of 2015. I was 25 years old, and I went to see an orthopedic doctor for the first time, looking for some help for my scoliosis and my pain problems. My doctor was awesome. She was a total sweetheart, very gentle and caring, and listened to everything I had to say. I got some X-rays done and she had a lot to say. I took off my shirt so she could see my back better, and she twisted me around, poking and prodding, showing me different areas where my spine was doing things that it shouldn’t. She pointed to the X-ray, showing me where vertebrae were twisted in opposite directions, explained each area that looked different than my first(and only) X-rays from when I was a child. She asked if I had trouble breathing, and when I confirmed, explained that it’s because my entire ribcage is malformed. One side is caved in, and my lungs can’t fully expand. This entire time I’m thinking things like, ‘ok this makes sense.’ ‘Nothing I didn’t know already.’ ‘Ok this is bad but I already knew it was bad.’

One thing stuck out to me though. While she was fussing over the things that looked obviously bad, she casually mentioned that I had arthritis forming in my top curve. ARTHRITIS. The talk of spinal fusions and breathing problems quietly slipped out of my head, as this ugly word, this old persons word, just settled in the back of my mind to nag at me. When I left the office, I just sat in my car and cried. I already knew something was different. Something was bad. But arthritis? No way. I’m too young for this. I immediately mentally berated myself for thinking those words, I’m too young for this, because it’s what I’ve heard my whole life. “Your back can’t hurt, you’re too young!”

But I couldn’t help it. I was too young! It’s not fair that at such a young age, I would be dealing with a disease that old people struggle with. And look at an old persons face when they mention their arthritis. You can see the pain in their eyes. I just couldn’t help but keep thinking, this is something that’s going to cause me pain for the rest of my life.

At that point, I had only begun to feel the effects of the arthritis. I knew something was wrong because when it got cold, my back would hurt in a way that I’d never felt before. It’s not like regular lower back pain when you strain yourself. Arthritis is… foul. It almost feels sentient, like it’s got a grudge and it’s out to cause as much discomfort as possible. It was November that i got the diagnosis and it hit me hard, but I was trying to accept it. But the rest of the winter came and went and “accepting it” became a laughable option. Turns out, the worse the cold, the worse the pain is. The more time goes on, the worse it can get and the worse the pain is. More time went on and all of a sudden it wasn’t just cold that did it. If i pushed myself too hard, my arthritis would flare up. If it rained too hard, my arthritis would flare up. I quickly sank into a deep pit of depression and my thoughts were so focused on how much I hurt that I didn’t even look for a way out.

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By the next winter the depression was bad enough that I was starting to wonder if I’d survive it. I tried to imagine the future, and for all the effort I put into it, I couldn’t imagine myself there. I’d never sunk quite that low before, and I knew it was time to get out. It took a long time, but I managed to start looking for help. I saw a doctor and started antidepressants for the first time, and although they were hell at first, they were a sign of hope. I started looking more into the arthritis and I realized that the phrase, I’m too young for this, really was as off as I told myself at first. I learned that there are different types of arthritis and that there are lots of people who go through something similar at my age. I read about different remedies and learned that turmeric, a simple spice, was used to reduce inflammation and pain. I started taking that, and it helped more than I imagined. I even went on a special low carb diet to try to combat something completely different, and it just so happens to be a great anti-inflammatory diet as well.

It took me a couple years in all, but my arthritis doesn’t scare me anymore. It can still get bad, despite the treatments, but I’m ok with it now. When it’s left unchecked, it’s hell. That’s not going to change. But what has changed is that it no longer has the power to break me. I had my pity party, I cried it out, and now I’m up for the challenge. Now I’m happy to tell anyone diagnosed at a young age that they aren’t alone and it’s not the end of the world. I’m a bit ashamed to admit how bad this one diagnosis hit me, but I’m determined that I will beat it.