#the disabled spoonie life is not always a fun one when your brain burns as hot as mine does augh | Explore Tumblr Posts and Blogs

newhologram · 7 years

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Pain is so bad lately at my part time job that I am constantly wearing icepacks (not enough so I'mma buy a few more soon). A customer applauded me for doing such a good job wrapping my big icepack around my neck like a cervical collar. I'm a spinal pain pro. Also, the worst lie my doctors ever told me about my pain was that my nervous system "made it up, here, have an antidepressant!" We know I have fibromyalgia, narcolepsy, ulcerative colitis, depression, PTSD, blah blah. We also now know I have been experiencing atlas subluxation complex. It's separate from my other illnesses, but at the same time it's interwoven. I went years and years saying, "I just have to be stronger and then I won't be botherer by this pain they've said is now permanent and incurable, while my spine got worse and my brain stem, nerves, and arteries got more compressed. I don't believe in what people think it means to "be strong" They made me feel like all this pain that I have been in for so long was my fault for not being strong enough. Like I was just some spoiled kid who wanted pain pills instead of putting in the work and just getting therapy because surely talking on a couch will fix a spine... when year after year I told them about the hundreds of dollars and hours I spend a month on natural pain relief products and treatments. Most of my days are me doing my own self-care and pain management. A lot of that is spent in bed, dizzied by the pressure in my spine, burning alive from the raging nerve pain from head to toe. She knew what atlas subluxation was when I brought it up. She tried to interrupt me when I explained why I thought I had it, why it made so much sense. She said "it's not considered a cause of illness" and said that doctors just don't do that sort of thing. It's not something they treat because they don't really believe it can make people sick, she told me. Let me clarify: Getting the worsening pressure taken off of your brain stem is considered "alternative" medicine. Fucking doctors, man. They could've killed me by making me go through this. I almost didn't make it out, over and over again. Pain messed with your head a lot and drags everything else in your life down with it too. I don't believe in an idea of "strong" that says hey good job! you forced yourself to keep up with people who are superhuman compared to you and your limitations in body and mind. You lived, for most of your life but especially your 20's, in so much more suffering by trying to just keep your head above water while people kept telling you how you don't look sick or disabled and how great you look, so you're in pain right now??? (yes, always. even on good days.) Pain and exhaustion and not eating and always awake because pain is LOUD and it often makes you vomit from its intensity. Pain that mo one else would tolerate for more than half an hour. It feels, constantly, like I've just been in a car wreck. And now that I'm finding things that are actually corrective and great but that will take 5+ years to heal from... listen, healing hurts so fucking bad too. Remember how much braces hurt for a few years pulling your teeth together? I am now moving and reshaping my entire spine. The rest of my body has to adjust with it. Sometimes the pain is so bad I feel like I didn't make progress at all or I'm subluxated again (well, it did happen once already, oh I'm a sham) it's as fun as it sounds Anyway, trust your intuition and yeah, listen to doctors, but also know that you have the power to research and learn and discover even more. I educate my doctors now on things they really didn't understand well. Meaning ALL OF MY ILLNESSES Trust your guts. Don't freak yourself out on WebMD with paranoid selfdx, but like. Learn. Study. Reading the stories of other spoonies can be really informative. Watch all the medical videos on YouTube. I can't be "cured" but you sure as hell bet I'll try to hang in for several years of painful spine reshaping if it means I can come out with a good percentage of the pain down. Then the rest is about being smart of what my body needs, in all it's dysfunctional glory.

#teku #chronic pain #atlas subluxation #invisible illnesses #chronic illness #personal

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newhologram · 7 years

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4.12.17

Today is exactly 14 weeks, about 3 months, since the procedure where my atlas and axis vertebrae were adjusted. Since the pressure was taken off my brain stem which turns into the spinal cord and communicates with my body and organs. Since the arteries that my brain rely on for nutrients were released from the pressure as well. Slowly, like dominoes falling in slow-motion, my entire spine is trying to correct itself. With each tiny movement, my spine fights a lifetime of misalignment. Muscles, ligaments, adhesions and scars from years of inflammation and pain that have only known how to be misaligned are now having to fight with my spine as it tries its best to fall into place. Not only does my tissue have to learn to be normal and adjust to this huge change, but as my spine and nerves start to have more space, my organs will need to adjust to a kind of flow that they never had before. Some of them may never be able to function properly, but at least they’ll possibly be a lot better taken care of when my brain can communicate with them.

A lot has changed in these three months. Sometimes it feels like nothing has changed at all. I still struggle with pain and fatigue, with keeping up working only a few days a week. It’s often even more pain because what a lot of us don’t realize is that healing is painful. Incredibly painful. The first few days after this adjustment, my entire back was screaming because suddenly, my spine was trying to move itself. I still feel it, like growing pains, like when I had braces as a young teen and they pulled my teeth into position. If that was so so so painful on its own, imagine your whole spine doing it.

I still have to wrangle depression and badbrain and try with all my power to see the beauty in life and a reason to get up every morning. I still have to put an effort into my own happiness even when I’m terrified of my future and still mourning my past. So much effort goes into defiant joy that says “I know I’m sick and I can’t get out of bed much today, but I’m still going to have as much fun as I can, even if it’s just laughing at silly videos alone while I'm in too much pain to do anything else.”

Even when I worry that this all means nothing and that I'll never be functional enough to be a "real adult", whatever that means. I don't believe it means anything actually. Just because I spent my 20's sick and dependant on family instead of dating, paying rent, partying, going on road trips, etc, doesn't mean I'm not a real adult. I am an adult and this is my experience in young adulthood and it's just as valuable. Disabled adults are still adults and I have a lot to share, a lot to teach, a lot still to learn about life.

But the changes are big, even when they feel small. Even when they feel so slow and meaningless because my body has 21+ years of misalignment to heal from and because I'm so impatient and hungry to get out there and kick ass.

For starters, I sit up straight without even noticing it. I can stand straight too, though my body often goes back to hunching because that’s how it’s used to being. I do my best to be conscious of it and stand tall. I stretch and look in the mirror, always checking my posture, always making sure I have a nice long neck instead of the crunched one I grew up with. I feel the bump on my spine worriedly. Is it swollen today? Is it going to get worse? Should I pack medication and Biofreeze to work? Should I bring my neck brace even if it's embarrassing? Even on days where it does get bad, I know things are different.

My nausea is a lot better. I've only had one vomiting spell since January during a bad flare up, as opposed to vomiting nearly every single week. I'm not constantly trying no to puke which is great for how I feel in general. Constant nausea usually makes my emotions so out of control and then because it's hard to eat, I feel even worse, and I just don't even want to do anything at all. I still get it on really bad days but in general since the procedure, it's been a lot better, and my colitis has been pretty much mostly in remission ever since with only with one or two small flare ups related to stress. Who knew a spinal adjustment could do that? I remember the doctor who did my adjustment said that she became an atlas orthogonal specialist because she had been living with horrible stomach problems for so long and no doctor could help her and she was so sick of how much the medical system sucks, until she found out about atlas subluxation. She got adjusted and her life was changed and now all day long she does this procedure on very sick people and helps them get to better health.

Instead of long, painful, woozy epsom salt baths every single day in a desperate attempt to numb the pain even for less than an hour, I’m able to save it for the very bad pain days when my body needs some extra help. This saves me money, which is always nice since I don't make that much to begin with. The same is true for my pain medication. A few weeks ago I had two low pain days in a row where I barely had to medicate at all and I felt so good and energetic and almost normal. Last week and this week I'm back to persistent and woozy pain levels with trouble eating and sleeping and having to medicate every day and work in lots of pain, but my state of mind is still pretty good because I feel calm in knowing that I can handle it and that I'm learning from each day. I know I can make it through my work days and then get home and kiss my cats, drink my turmeric ashwagandha milk, play a little Overwatch or the Sims before my body screams at me to stop (if I'm lucky enough to be able to play that day), and spend up to an hour or two on long, slow yoga and meditation before I get back in bed. It's definitely hard a lot of the time because of my workaholic tendencies and my depression being aggravated by not being productive. I still struggle with feeling like I have to constantly be working on things otherwise I'm worthless, and it takes a lot to quiet that neurotic part of my brain, but it's been worth it for the extra rest time. I don't need to rush.

After the nasty, huge, swollen spine flareup I had in March that was really getting me down, I got extra serious about my Ayurveda and self-care routine. I picked up my book to refresh on what I'd learned at Chopra. I perfected my essential oil blends, my massage oil blends, made a better schedule each day for herb intake, meditation, chakra work, rest, yoga, self-massage, journaling, etc. That has been hugely helpful in not only managing my physical symptoms, but my mental and emotional ones. The pain really puts me in a bad mood. I end up feeling so hopeless and overstimulated and cranky and alone, like no one cares and I'm just an annoyance, and it takes so much of my energy not to let those feelings affect other people, especially if I have to work or run around to auditions. I have to act as if I'm not in any pain at all, because I want to keep my job, and I want to book jobs, and I want to be happy and help other people be happy too. I am constantly performing good health while my knees shake and my spinal pain burns me up. I'm very lucky to work at places where my coworkers are understanding and caring about what I'm going through.

But most of all my better routine really helps me to keep my goals in sight and to respond to every situation in healthy ways. I know that things have been really hard and slow and it feels like I'm not going anywhere. But things in life are accumulative and they build up over time, especially healing and careers and things like that. I've been planting seeds for years now even when I didn't believe they would grow, and now with more time devoted to coming back to myself, I'm able to really clearly understand things and see the progress that I couldn't see before. The things coming together that I didn't notice. Things that I want to do and that I know I can do.

I said this after my adjustment, that I knew this year was going to be different for me but I didn't know how yet. I still don't 100% know how, but I know that I just have to keep getting through each day, keep focusing, keep listening to my body, keep planting seeds. Each month will bring new change. It will take years to know how much can get better from my spinal adjustment and it won't fully cure me, but even a seemingly small percentage of increased organ function and more manageable pain will be better. I'll keep up with my routine, with seeing my chiropractor, acupuncturist, massage therapist regularly, and my new primary care doctor who seems to actually want to help me and send me to specialists who can actually do something, unlike my old ones.

With all that together, I just gotta keep my head up, get through my work days no matter how rough so I can pay for these medical expenses, keep focusing on healing, keep blogging and vlogging and sharing things and talking with other spoonies, and keep moving forward.

Thank you to everyone who has been kind and encouraging not only recently but all this time that I've been sick. Even just liking my posts is hugely encouraging for me to keep doing my best especially on days where I feel like nothing I do matters and I'll never be healthy or happy.

I may never be healthy like a regular person, and that's just what I have to work with, but I know that I can still be happy and I can make a difference by continuing to share my story.

#long post #teku #personal #atlas subluxation #chronic illness

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