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

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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.

“My curve is bigger than yours” and other nonsense stigmas of scoliosis

Support. No matter what you may be struggling with; mental illness, disability, chronic pain, parenting, there’s a support group for everything. When things get tough and there’s nowhere else to turn to vent, a support group centered around your specific struggle seems like a good idea. You expect empathy, understanding and comfort. Maybe even some helpful advice from people who have already been there. But sometimes, that’s not what you get.

It’s no secret that I’ve got a few issues. But I’ve noticed a big difference in the way people act within each group. With mental health issues, sufferers are quick to speak up and help someone in need. They immediately offer support, empathy and patience. They offer advice on diet, what meds to try, what kind of doctor to see. There’s no jealousy, just a bunch of people who are in pain and want to help someone else who is in pain. Most of the time anyway.

But it seems to go a bit differently when the pain is physical. I can’t speak for other chronic pain conditions, mostly because I only write about what I know, so in this instance I’m talking about scoliosis. And it is amazing to see how careless people can be. From the second someone is diagnosed, there are a million things to learn and figure out. What do you do about it? Get a brace? Have surgery? Pain medication? Physical therapy? Nothing? There are so many ways to go about it and everyone has their own opinion that they believe is right.

But scoliosis is not like a broken bone. You don’t just set it and move on with your life. Every single case is different than another, and even every individuals circumstance changes through time. I wanted to take a look at some of the ridiculous myths and stigmas surrounding scoliosis, and clear them up the best I can. And remember, everyone’s experience is different. Just because it didn’t happen to you… You get it.

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Everyone has some form of scoliosis.

No. Everyone has some sort of curvature to their spines, yes, because our spines are not meant to be pin straight. There is supposed to be a slight curve at the neck, and there’s a nice, soft curve along your back that allows for the best movement and function. But curve does not mean scoliosis in this way. Scoliosis is when your spine curves to the side in a way it isn’t supposed to. When people say that “everyone” has scoliosis, what they really mean is that it is common.

And common does not mean it’s not a big deal. While it is definitely a common thing, most people who have it have small curves that don’t affect their life in a negative way. Most of those people will go through life with very minimal problems and it may never get much worse. There are plenty that have no idea they have scoliosis because it’s never caused them pain. Comparing those people to someone like me is where the problem is.

Scoliosis does not cause pain.

I cannot tell you how much this makes my blood boil. It is truly disgusting how many people are told by professionals that scoliosis does not cause pain and that they must be doing something wrong. I have been hurting since I was four years old, and if any doctor tried telling me it had nothing to do with my scoliosis, he’d quickly find his name plastered all over the internet with his idiocy. Anyone that I’ve ever showed my Xrays to has a reaction of, “ouch! That must hurt so much!” I don’t get why so many doctors can’t understand such a simple fact.

A small curve isn’t a big deal.

Wrong again. Although yes, a small curve has the potential to be no big deal, every person is different. You can have two people diagnosed with a 10 degree curve in puberty, and one may grow up with no problems and only have slight pain when they get older. Meanwhile, the other will get worse, and that 10 degree curve can progress until it’s past 50 and surgery is recommended. You can’t predict how it may or may not progress so no matter how small, it is important to keep an eye on your spine if you’ve got any degree of scoliosis.

The larger the curve(s), the more pain you will have.

It is honestly amazing how misunderstood this one is, especially in the actual scoliosis community! Someone will come in looking for some support, post a picture of their most recent Xray and say that they are in pain. And you would not believe how many people will respond, basically with, “My curve is bigger so I’m in more pain than you.” Of course, most of the time no one says those exact words. But it’s implied. People with smaller curves get no sympathy at all, and people with large, scary looking curves get enthusiastic praise for being “so strong” and all the empathy in the world for the pain they’re going through. But I’ve lost count of how many times someone with a more severe curve than me will admit that they don’t hurt that much.

Pain doesn’t radiate at an equal rate of bigger curve=more pain. It depends on your lifestyle, your diet, your exact curve, your muscle definition, so many things! For some of us with double curves, one curve is sitting on top of the other, so even though it may be “worse” than other people, it means that instead of leaning to the side or standing up crooked, we still stand up relatively straight. And sometimes that means less pain than you’d imagine.

You MUST get a brace/surgery/chiropractic care.

Again this is one of those things that differs with each case. In many cases, chiropractors can help with pain enough that the person doesn’t feel they need any further treatment. In other cases, like mine, the chiropractor can be nothing but a hindrance to proper care.

Same goes for braces. Some people swear by them, some say they’re a waste of time and effort. Many studies have shown that they help prevent scoliosis from progressing, and even straighten out the curve a bit. But many others have shown that people who were braced tend to experience the same amount of problems further down the line, and need surgery just as often as those who were never braced. But these studies are still comparing completely different people with different builds, lifestyles and activity levels. It’s difficult to compare results when the subjects are so different.

And surgery. Too many people tend to think that surgery should always be done if the spine is not straight. But in fact, surgery is not always the best option. If someone’s curves are not causing them any pain, or very little pain, it’s not always the best choice. It’s easy to look at an x-ray of a scoliosis sufferer and assume they need to straighten out their spine. But in reality, many of us get through life just fine without any major interventions. Spinal fusions are no doubt life changing surgeries but they don’t usually last. Most people who go through a spinal fusion need an extra surgery at some point to fix hardware, to remove hardware, or replace it with upgraded stuff. Some people get lucky and get 10-15 years of lessened pain and feeling well until they need more intervention. But there are many cases where screws pop out, rods come undone or the body rejects a piece somewhere. It’s not an easy thing to go through and shouldn’t be done for vanity or taken lightly.

Scoliosis is just about your back.

Scoliosis may be a condition of the spine, but it affects all of you. A curved spine can lead to many issues that at first glance seem to be unrelated. It can affect your posture(obvious one), your breathing, balance, mental health, and add pain in countless areas. It can cause pinched nerves, lead to degenerative disks, arthritis and bone loss. It can affect your stomach and cause gastrointestinal issues. It has even been known to cause infertility in some cases. Don’t underestimate how much your spine affects your wellbeing and the workings of your entire body.

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I’m sure there are plenty more things to go on about but no one wants to go through that much. The moral of it all is this: Don’t assume you know anything about what someone else is going through. I’ve dealt with scoliosis my whole life. I’ve been in pain since I was 4 years old. I dropped out of countless extracurriculars and struggled through school with bad gym grades and a horrible self esteem. I’ve got chronic pain, and I developed osteoarthritis in my spine at only 25 years old. And through the support groups that I do turn to once in a while, I’ve seen so many stories similar to mine, yet so many more that are much different. I’ve seen people with larger, scarier looking curves swear that it doesn’t cause them much pain and that they are thankful they never went through with surgery. And I’ve seen younger people, like me, with milder looking curves who seem to be having a much more difficult time than me.

So you know what? If you tell me you are in pain, I will believe you. I don’t care if your curve is 5 degrees or 95. If it hurts, it hurts. Because what hurts more is when you try to turn somewhere like a support group and all you get is doubt. When I go into a forum about mental health and say that I’m struggling, no one asks to see proof from a psychiatrist that I’ve got a real diagnosis. No one compares how long I’ve been suffering to how long they have. Yet with scoliosis, it’s “How big is your curve? Show a pic of your xray. Oh, my curve is much worse it can’t be that bad.”

No.

In the end we are all struggling, some of us a little and some of us more than anyone can imagine. I’ve chosen to take the high road and be kind and supportive to anyone who needs it. I’ve chosen to ignore my basic thought of, “well my back is much worse,” and instead reply with, “have you tried turmeric/heating pads/tens units/etc?” Support should be encouragement, advice when and if it’s appropriate, and empathy. Let’s try to make a change. No more putting people down because they didn’t follow the same line of treatment that you swear by. No more comparing issues to win at this ridiculous game of who is in more pain. No more questioning hurting people for no reason. We are all in this together folks, let’s step it up and handle it together.

We may be bent, twisted and curvy but we are never broken.

The Pain Cycle of Scoliosis Sufferers

I’ve spent much of my life taking it easy. Not sure what made me learn to do it, but somewhere along the line it just became habit. Not to push myself very hard, not to attempt things that are overly physical, or lift things that are heavy. There have been countless times where I will pull back from something, and somewhere in the back of my head, it feels wrong. I can’t possibly be that fragile, this is stupid to be so careful.

As I got older and had kids, my life went from “let’s take it easy,” to “I’m not gonna deprive these kids of anything just because it hurts me!” But I was also creeping closer to 30 and I realized that I had lived kind of a boring life at times in an attempt to keep from hurting myself. I decided to change things up a bit, to hell with the pain. My life became a cycle of pain and accomplishment that seems never-ending. And as I’ve learned, I’m not even close to being alone in it.

The holidays are an especially easy time for chronic pain sufferers to overdo it. Thanksgiving already beat me down twice. Two different times I pushed myself, did way too much, and then paid dearly for it. I was so frustrated that I did that to myself, twice in a matter of days, and I took to Facebook to vent. Sometimes the only people who truly get it are the ones who suffer the same things you do. And the response I got, was just comment after comment of everyone exclaiming “yes! I do the same thing! Why do we do this to ourselves!”

And yes, this was a special occasion. You want things to be perfect for the holidays so you go nuts. I get it. I repeated these bad choices for Christmas and a few times since the year new already. But for those of us with confused, curvy spines, it is an absolutely every day thing. I wake up to see what parts of the house are a mess, and if I feel up to it, I go to town cleaning everything I can. At the end of the day I might even feel proud of what I accomplished, but on those days, I pay for it. Because that’s when I need to take a pain reliever just to get to sleep. That’s when I wake up in pain in the morning and everything I do hurts. I get mad at myself for doing too much, and then I’m forced to relax and try to heal, doing only what is required to get through the day. Then while I’m trying to heal, chores build up, anxiety builds, and a day soon comes where I exclaim, “I can’t do this anymore!” I go on another cleaning spree, never actually getting everything done, and again, I have to stop. I might even repeat it the next day, making my already hurting body so much worse. The house will look okay, but I can be found crying on the couch with a heating pad, a massager or a tens unit, popping pain relievers and having another pity party. But I can’t seem to stop doing it.

When you struggle with constant pain, finding a happy medium is either ridiculously difficult, or downright impossible. It’s a choice between staying at a 6 pain wise to attempt to keep up every day (and never actually get everything done), or take care of yourself so you can actually feel okay for a few days, and then just deal with a 9 or 10 for a day or so. You probably get the same amount done, but at least this way you might get a few good days in between. Neither choice is ideal for you or anyone else. It feels like you can’t win.

So if you ever come to my home and I tell you, “Sorry about the mess,” I mean it. I really do hate that I can’t have a Pinterest worthy home. I hate that I can’t seem to keep up in a way that won’t aggravate my husbands OCD. I hate that the simplest things need to be planned out instead of just done. And I hate that although I’m doing my best, I feel constant guilt that I can’t do more. That I can’t be more, and that my pain holds me back from so much. And that I will continue to do this to myself, over and over again.