LEGO World construction has begun.
I didn't wake up with a blog post in mind, but today marks the fourth year since an accident that left me disabled. FUCK DISTRACTED DRIVERS. This isn't a doom and gloom post. I can't be that person anymore when living with a shitty chronic condition. It's all about positivity now.
Last week I met with a reporter from the local paper, The Times, to talk about lead in our water. Apparently, our home has the fourth highest lead level in the city of Ottawa out of 30 sites that were tested in September. After we finished talking heavy metal, we discussed CRPS and the DRG stimulator in my back. I tried to answer the reporter's questions as best I could, but I wasn't concise with my answers as there is a lot to share and I was afraid of how much I should actually share. (Also, my family had a completely different health scare that was weighing heavily on my mind that day which turned out to be positive, even though the results were negative. Yes, I'm talking about the cancer.)
I shared with the reporter that I had to wait one and a half years to be accepted into the Medicare program. The pain doctor I was seeing wouldn't schedule my DRG surgery until I had Medicare, because Medicare is one of the few insurances that will cover the surgery. My Blue Cross Blue Shield health insurance that I had wouldn't cover the surgery. I think the bill was over $200k. Since the surgery I've had about a 50% reduction in pain. However, the pain isn't gone, but it's way, way better when compared to pre-cyborg me.
At one point the reporter asked if I could work since having the surgery. I don't remember how I answered his question. I want to work. I hate not working. Not only do I feel like a drag on the system, but to my family as well. I mean, if you met me and I never told you that I had a chronic condition, then you'd never know. I have gained about 20 pounds because my mobility is now limited. Sometimes I walk like Frankenstein's monster, but most of the time I'm able to walk fine, especially when I wear comfortable footwear. Even though my pain is improved, my ability to accomplish tasks is still limited and can become quite difficult. Yes, I can walk much farther now, but I still can't stand in the same place for more than a few minutes without turning into an antsy five-year-old ready to have a seat on the ground no matter where I'm at. If it's below 20 degrees outside, I'm of no use and I need to be indoors under a blanket. I still have to take breaks like a person 25 years older than me when I do anything that even moderately raises my heartbeat. Sometimes I gotta nap after completing simple chores because it zaps me of energy. Also, I have to be careful bending and moving so I don't disrupt the leads in my back. Eventually my stimulator will need new batteries... if I go back to work and get different insurance will that surgery be covered? Or will I have to quit, wait another two years with pain at a 5-6 level before becoming eligible for Medicare again, hopefully? Our health care for a First World country sucks. The DRG stimulator masks the pain. If I turn it off, I'm screwed again. There are so many variables with the stimulator and I still am looking for potential cures, so I don't have to rely on a battery operated stimulator. What was I talking about? Maybe I should run for president. Oh, yeah, can I work? No, and it disappoints me to say and to accept that. I wonder how I answered that question when I was asked? I probably have shared too much.
Speaking of cures, yesterday my sister texted me a story about a therapy clinic in Arkansas, as well as a link to the clinic. The clinic doesn't guarantee a 'cure,' but what they do say about their treatment intrigues me. They offer a holistic approach, but it's 12 weeks long and the cost would be completely out-of-pocket and surprisingly, they don't have costs listed on their website. I sent out an email and I'm waiting to hear back from them, so maybe there's still a magic bullet. But, I have a feeling that it'll be more like the movie Man on the Moon when Andy Kaufman realizes that the removal of his cancer wasn't real and it was all a hoax. WITCH HUNT! FAKE NEWS! Thank the do NOTHING DEMOCRATS!.. sorry, just practicing for my presidency. At least if I went to the clinic it'd probably make for an entertaining and humorous story, right?
In other news, I have built a table in the basement for our LEGO World. I always wanted to build a model train set and that's exactly what I've done, but with blocks. LEGO is one of the greatest distractors for me. I know it's a toy, but you can build anything you want and our train set is way cooler than your lame Lionel O-Gauge. It's all about the L-Gauge.
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