#mod ely

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When my back pain became severe and constant, the opioid crisis was only beginning to make national news. I was prescribed Vicodin at the start, but when my governor signed a bill limiting prescriptions for opioids, I was suddenly cut off. While I cried and begged in doctors offices to get the medication back, I was told to just exercise more.

Eventually I was allowed to have tramadol, which is a synthetic opioid and is not as addictive. Most doctors will use this medication now before even touching drugs like Vicodin or oxycodone. I highly suggest, if you haven’t already, to aim for this drug if it’s an option. The only limiting factor is the pills only go as high as 50mg. At first I was given only one pill. I had to argue with different doctors for gradual increases to get to my current daily dose of two pills in the morning, and 2 in the evening. Most people in severe pain are going to need more than a couple of pills a day.

Still, it wasn’t enough, at least not on days when the pain got really bad. So one day I found myself asking my doctor for a supplemental Vicodin prescription. I felt confident this doctor would say yes. Why? Because I had “doctor shopped”, meaning when I went to one pain clinic, I left after I realized they did not prioritize my treatment and one doctor even implied it was all in my head. Luckily my search for an understanding and sympathetic doctor ended at the next pain clinic I went to. They had already agreed to increase my tramadol and encouraged frequent injections instead of arguing with me that it was unnecessary. Plus he told me flat out my pain was real and they will do their best to manage it. (If you live in the Boston area and want to check it out, just send me a message)

So ultimately, the first step is getting a doctor who wants to help and doesn’t put their ego before your treatment. Otherwise the doctor will be to preoccupied with the legal restrictions placed in them to even consider it.

Next, when you’re asking, make sure to emphasize your preference Not to take these drugs and that you do not like the way they make you feel if you have taken them before. Add your concern for constipation and addiction. I have IBS-C, my use of this medication had to be limited or I will be blocked like a dam. It’s not fun. This shows you take the drug very seriously and are not a “drug seeker”, which you need to do because addiction isn’t the only risk.

Unless your pain is at levels where you can’t function otherwise, do not request a daily dose. (However know that if you need daily doses I support your endeavors and do not judge your need for pain relief) Tramadol or whatever else you use for pain medication should be your base pain medication, if it is possible. Opioids should be for your really bad days, again if it is possible. This is for two reasons. Opioid medications, in my state at least, (check with your own state or country’s laws) are restricted to a week supply. Most pain clinics won’t want to have to give you weekly RXs that you cannot put refills on. My doctor gets around this by writing the RX as a daily multiple dose so I get 40 pills. Those 40 pills are then supposed to last me about 8 weeks. They won’t last if I take them daily, but it works for taking care of my flare ups and bad days. For those who need daily doses of opioids, look to your state or country’s palliative care laws, in many cases they allow for exemptions on opioid restrictions.

The other reason you should avoid daily opioid use, if you can, is not just because of the tolerance build up, constipation, and addiction risk but also opioid induced hyperalgesia. It is a side effect under which your pain actually increases, thus requiring even more opioids. Avoiding daily use helps reduce the risk of inducing this rather unpleasant side effect.

Furthermore, when it comes to requesting these medications, stress how much you want to do more physically and how much the pain holds you back. Exercise can reduce pain for certain conditions, when done right, but for the most part it often increases our pain. Fun activities that require lots of physical effort can be too hard to do in pain or become painful flare ups for days after. Having Vicodin allows me to be more active and recover faster afterword. When I told my doctor how busy I was in June thanks to Vicodin, he was really happy and felt the Vicodin was doing what it was supposed to do.

Lastly, keep a record of your pain so if your doctor wants to know approximately how many bad days you have, you can give him an answer. Plus most doctors like that I record my pain and keep a journal with all my medical stuff. This will go miles into showing your responsibility and help you avoid being labeled a drug seeker.

If you’re unsuccessful, don’t give up. There are doctors out there who get it and do want to help. I know it’s easier said than done, and that in some places it can be really hard to find alternatives, but just know you have power over your healthcare. You shouldn’t have to keep seeing someone who doesn’t truly have your best interests at heart. In a perfect world, those who suffered from chronic or constant pain would not be denied the pain relief we so desperately need.

Mod Ely (Angel) here!

The GBA Sonic games were, are, and always will be, my favorite GBA games to date. There’s no other game I would rather play on a handheld than Sonic Advance 3! The concept of partnering and gaining new playstyles simply blew my mind the first time I played the game. Tails and Amy were my favorite combination :D

Sonic Advance 2 was my first GBA game. I actually found my GBA outside a shoestore, and it had that game inside. It was like a gift from the heavens, I swear it <3 Advance 2 was a little difficult I remember, but I think that’s what made it so satisfying to beat with all the characters. Getting the chaos emeralds was too difficult for me though..

Sonic Advance, gosh I remember playing that game at my uncles place. He had a strategy guide for it that basically said Amy was the hardest to play, because she was slower, couldn’t fly, glide, or climb, and her attacks stopped her dead in her tracks. I found that confusing, since I played Amy all the time in that game… And the Tiny Chao Garden!! Too much fun.

Why haven't you posted anything since 2020?

For some, disability is a sudden event. For others, they are born with it. That wasn’t how it was for me. No, instead it was a slow change. Almost like aging, only with every passing year my body got sicker and weaker until finally disability was my new normal. I’m only thirty-three, but I suffer from constant pain and other debilitating chronic issues, including mental illness.

In childhood I mainly suffered from asthma and lung related complications. I had pneumonia five times as a kid, collapsed lungs at eight, and way too many hospital visits in-between for a child. By my teen years I had migraines and suffered from depression. There was also ADHD, but I would not be diagnosed until I was thirty. The fact that I was so physically ill as a child meant my developmental issues were overlooked or explained away as a child who was too sick to always play with the other children and learn to be social and make friends.

You never know when the prime of your life is until after you’ve lived it. It’s only in retrospect can you recognize when life was the most active, the most healthy, the most fulfilling.  For me it was my early twenties. Things were really good for me, I had lots of friends, (many of which I met at anime conventions) a steady job and even moved out to live with roommates for a while. I traveled up and down the East Coast to anime conventions to cosplay and meet my friends. I partied with local friends almost every other weekend. I drank too much, but who doesn’t in their twenties? I did have a mishap in 2008 and badly sprained my knee, causing patella subluxation. It caused lots of knee pain, but I could still walk, and only rarely needed the help of a cane. Still, I didn’t consider that disabled.

I would say things started to change noticeably for me in 2011, when I was twenty-six. I began to have stomach issues and relapsing depression. To top it all off, I realized I was self medicating an anxiety disorder with alcohol. However, now my stomach no longer tolerated it, so I had to face my anxiety and deal with it the right way.

Eventually I was diagnosed with IBS-C and work became a very painful and uncomfortable place to be. This is when things really started to go downhill and my work attendance suffered extremely. And yet, despite all I had been through and suffered, I did not consider myself disabled. No, it wasn’t until I went to work one day and got up to go the bathroom to find I couldn’t stand up straight without agonizing pain. I ended up laying down on the floor in HR waiting for an ambulance to come get me. I knew then something was seriously wrong and the word disabled started to enter my vocabulary.

The incident itself was the result of a muscle spasm, but it pointed to something else that was becoming a growing problem. I was suffering more and more from lower back pain and soon I would find out it was because of a herniated disk. More recently during a procedure at my pain clinic, I learned it happened because I have an extra vertebra in the lumbar region of my back.

Living with constant pain changes you. You become bitter and consumed with how much pain you are enduring every single day. Sometimes you can bear it, other days are full of tears, and even others are full of anger. It would come as no surprise that my worsening physical health took a huge toll on my mental health too.

However that’s not the end of the journey. While being treated for my chronic pain I was diagnosed with Fibromyalgia, a neurological pain condition with no cure and limited treatments that I mostly cannot take. Oh and my good knee is going on me too, because why would I need my knees? Suffice to say, I am using my cane more and more these days, sometimes from pain and other times from balance issues.

Lastly, as I mentioned before, I was recently diagnosed with ADHD. I suspect I may have autism, but as an adult I am unable to get a diagnosis through insurance. I would like to be tested for autism spectrum disorder, but I may never get that chance. Regardless, self-diagnosing has given me the tools to better understanding myself and why social interactions are so difficult for me. Learning about both ADHD and autism has been very eye-opening for me; executive dysfunction, sensory disorders and overload, stimming, and so much more, things I never knew I had or dealt with. Unbeknownst to me, I was dealing with conditions and symptoms that handicapped me in ways I could never put to words, but now I know. Now, along with an understanding psychologist, I finally have the language, pills, and tools to cope.

I used to lay in bed at night crying because I had no friends. It wasn’t until I met like-minded individuals as an adult, geeks like me so to speak, could I actually connect with people. And of course some of those people are a lot like me in various ways. Finally being able to make friends with people and bond over shared interests cured a loneliness in my heart that the child I used to be could not. Learning about these developmental disabilities has helped me put a lot into context. I’ve had a pain in my heart for so long that only now can finally begin to heal.

I have glossed over a lot about my disability history, which is inevitable in a blog post. Most of what I have been through with my health would fill a book. My intent in writing this post is to just give people an idea of where and what I come from. I intend to use this blog to write a lot about disability, chronic pain, and ableism, and while it may not be necessary I open up with such a personal post, I wanted to so I can connect with others like me. I hope this blog can eventually become a small little safe space on the internet for disabled people to talk about their issues and connect with others.

I am a disabled woman and this is my truth. I live with pain every single day of my life. I have constant stomach problems, migraines, and sometimes need a cane to walk. I also struggle with mental and developmental disabilities, which are just as severe and debilitating as my physical ones. Despite all this, I am a bird watcher, photographer, and trying to be a writer again. I may be out of work, but I hope one day I will return to it. Though, I have to accept the reality that I will always be in pain and will only be able to manage it with pills and injections in my back. There is no cure. This is my new normal.