Disclaimers: This is more of a personal blog in its purpose, than to achieve any kind of activism goal, other than it will reinforce why I do choose to do the activism that I do.
I will discuss things that are very controversial, such as politics, weight issues, addiction, sensitive medical and mental health stuff and I will do so with some profanity.
If ANY of those topics are triggering to ANYONE, please DO NOT read.
Also note, my normal disclaimer still stands because I do talk about topics than can be a matter of life and death, I will always urge those who are in medical or mental health crisis or if you suspect someone is, to get clinically trained professional help in an an acute setting or contact emergency services.
And yeah, I know this is SUPER WORDY, the last quarter of the blog can help people who are collateral damage because of the opioid epidemic or how they respond to pain meds in severe chronic pain situations, so if you want to skip 75% of most of the blog, the last quarter might be able to help others recognize somethings that are critical in patient care of severe chronic pain patients both with disease and/or syndromes, that took me forever to figure out in myself.
Editorial Note: Updating blog 8 days after publishing, to be clear as the title of it, can be misleading. When I talk about loss of control, it’s circumstances being out of the realm of my control, not mental health related. I’m not thrilled at my current circumstances, which is explained in great detail below, but I’m quite mentally stable.
I’m sorry if the title of the blog could be misconstrued for others to think otherwise.
It made the news recently and it was a story that made me feel both vindicated AND sad.
It was the news item that the Disney movie “The Incredibles 2” had a medical warning.
While I’m lucky to not have epilepsy (I have migraines as well as 5 fucking other types of headaches, with neuro issues), I am super light and noise sensitive and even a non jarring movie, such as a rom-com, it’s not comfortable for me to watch movies or engage in most entertainment events in public, because I can’t control how my body reacts.
But even while the few people I still see on occasion, it’s hard for them to understand how I can do even less than I did 3 years ago, let alone what I was able to do 13 years ago.
It’s one thing to not be able to work anymore due to disabilities.
But while even most “spoonies” can understand that, it’s less understood how even fun events, ain’t so fun for me.
What made me sad about that news article is I was able to recall seeing very little of the first “Incredibles” movie when it came out.
I took my children to the theater, I still was an active mom, while quite sick then, where I took my 2 year old and my 13 year old to the movies, like many parents do and I spent most of the time chasing my 2 year old in the lobby, cause Zoe just couldn’t sit still and spent most of the time chasing her in the lobby.
I didn’t mind that memory when it happened and I find it so bittersweet, now.
Because it was SO normal.
I can only do very little and sporadically now, with “the trinity of my heart”, that would be my kids and my boyfriend and for example they all love Star Wars, my kids love movies though in general, more so than my boyfriend.
I’d try to explain, that it’s not just a lack of interest in the series that makes me not want to go with them (as I “wiki” the last 2 movies to be able to talk about them, as I can still read) , as I’d appreciate anything to bond with them over, it’s literally a waking physical nightmare to go to a movie like that.
My kids saw that almost 2 years ago, when my daughter, in her school choir, sang the anthem at a home game for the Timberwolves, I literally buried my head in my hands, I couldn’t stand any part of what it takes to sit through a sports event, especially the noise and the lights.
But this is what the last few years have been like, NEVER thinking when I still think about where I was 10 years ago as a suicidal mother who was about to give up custody of her kids and then give up her life, 9 years ago when I still was stuck in the system and 8 years ago when I was trying to NOT die from my gastric bypass complications.
I didn’t think the status quo for me could be anymore limiting as I have my freedom and a life that’s so bizarrely but not hurtful in any way, that’s so lacking in being 1/100th of the person, let alone the parent I was 15 years ago.
Events in the last 2 years;
2016: Election year, which I knew wasn’t going to go my way, so to speak. The major surprise for me wasn’t on election night, it happened 3 weeks prior, when I found myself with a bedbug infestation that I ended up having to live with for 3 months because another resident 2 floors above me, didn’t report when they originally happened so they spread like bedbugs do, quite quickly when not reported or responded to, right away.
You’d think for someone who’s not Ms. Clean it wouldn’t bother me, but it was awful and horrifying, having to go to bed and live every waking moment in a bedbug infested house, every crevice of my apartment was swarming, it took weeks to get an exterminator and months to get rid of them.
Unfortunately by the time early 2017, by the time I didn’t have them any more, I didn’t have any peace of mind left, that’s the cruel but true reality when you live in affordable housing, in a lower income bracket, but some people have addiction issues that create constant barriers in them appreciating their housing and unfortunately do present a constant threat to others physical and emotional wellbeing and safety.
Because they don’t realize or don’t care about the risks of their freedom or their lives, due the nature of disease and they aren’t aware of how abnormal it is, to at least not try and hide it.
I’m not dissing low income or people with barriers, I’m saying though in a big city, it makes even more challenging to try and provide housing to people who may not show signs that they aren’t meant for living independently due to so many unfortunate for them circumstances that do effect others, adversely, too
2017: I had started using food as a coping mechanism in late 2016, because in addition to losing 1/2 my stuff and my peace of mind due to the events of 2016, eating a lot of carbs (not as much as you’d think, as I’m reversed but not of normal anatomy life I was prior to my gastric bypass). I gained 30 lbs.
But I could still walk. Not without a lot of pain both during and after a walk but meds still helped a little with pain.
Until late Fall of 2017 when I couldn’t walk more than 5 minutes without both back pain and feet pain being unbearable. Instead of being able to get in 5-8 miles a day, 3 to 4 times a week, I can’t risk walking at all because I literally cannot bear the feet and back pain, so I got even more restricted both physically and mentally in what I could do.
The Holiday Season of 2016, and my birthday fell in (it’s 12-2) was effected because I couldn’t go anywhere because of the bedbugs without taking major precautions, so I was home a lot, even though I could still walk, I also was living in having whatever materials goods I had left of them being, packed.
As I threw out over 1/2 my stuff with the infestation.
Holiday Season of 2017 couldn’t go anywhere because my body was broken and it broke most of the spirit I had left.
I woke up on my birthday, almost 8 months ago, at 1 am, with the fire alarms going off in my building, one of my neighbors above me got in a fight with her boyfriend and set his hoodie on fire, it caused all the sprinklers systems to go off and my apartment was again flooded (I had even a more major flood in 2013, due to resident behavior).
And the result in 2018, is another 30 lbs that I honestly don’t give a fuck about. I just don’t want to gain more weight and I feel helpless ever since I lost the ability to walk effectively for more than 5 minutes and that I can’t go out, unattended due to my severe physical reaction to pain and stimuli, as well as what it’s like to live with people who have barriers and addiction issues who don’t realize the consequences it has on themselves, let alone anyone else.
So I know fully why I turned to food, it’s something I need, that perishes and it’s less likely to be adversely effected by other people’s behaviors, even though the weight gain didn’t effect originally my ability to be active, it does effect my comfort now.
While all those things caused me to lose all hope (except the fucking weight gain that I don’t care about but don’t want to gain anymore weight, because even if I became the most zen person possible, I could gain another 500 lbs and not only would I still not want bariatric surgery, which I still defend, I still probably wouldn’t be eligible, given my unique circumstances with my gastric bypass) , at least personally, I still have purpose and while I’ll explain that in greater detail, as an activist, while you need BOTH hope and purpose to have a shot of a decent life, you have to have at least ONE of them to mentally STILL have a life, in my case becoming more unrecognizable and way more unpleasant (even though I’m grateful for what is good, such as those I love the most being alive, the little I can do, etc.).
So I have some meaningful purpose still, but not much else.
In 2018, with the opioid epidemic being a true crisis and realizing that I have a strong tolerance to them, led me to find out something that’s not talk about much and that I think it’s playing into my pain issues, as my current high dose was no longer working and I could understand to an extent, why my physician didn’t want to increase my meds (this is discussed in much greater detail in a previous blog).
As well as other’s issues with chronic pain, drug abuse, addiction, overdose and the criminal and adverse physical and psychological circumstances that most people are touched by when it comes to opioid epidemic.
It’s a medical phenomenon called “Opioid Induced Hyperalgesia”.
What it means in layman’s terms, is that people either become resistant to analgesic effects of pain medications or the opioids themselves make the pain response worse in both patients who have any kind of injury or disease or peripheral pain response is worsened by the use of opiates, so not only if one is tolerant to opiates they don’t work well , they have the double whammy of making their awful horrible pain, even worse.
Again, I’m not a doctor, that’s my interpretation of the clinical of OIH, it’s not to be taken in any other way, then making it clear, in my not clinically trained highly opinionated self, that if a patient thinks a provider has addiction bias in their treatment, they could be clearer in concerns of prescribing opioids, even as a last resort, because even patients who are terminal, are suffering, as well as the severe chronic pain population due to the OIH phenomenon, as well as that could be the cause in patients who self medicate with an unreasonable amount of opioids that they unfortunately overdose on.
The most shocking thing when I realized that in me, is why I didn’t recognize it sooner, when researching the clinical in opioid tolerance, I don’t respond well to most medications, in most therapy classes or I can have such polarized different responses in medications the SAME therapy class.
But I’ve always been medically challenging prior to being put on opioids, whether it’s with anesthesia, analgesics or again, all those other medications.
What makes me madder and more frustrated, is that how did NO physician recognize that in me or the fact it’s so easy to suspect drug abuse or addiction in a patient like me where I’m not known for my compliance but I honestly don’t behave in a manner either, that’s known for in drug abuse or addiction.
But I look at my being, even at the age of 48 being closer to the end of my life (vs. being mid life, again, I’m not suicidal, I think something major is being missed and I now have a notarized DNR that’s clear in no life saving or life extending measures of any kind) , as much as it sucks mentally and physically to realize that I’m going to probably continue to live and die in a horribly painful and even more limiting life manner and how it’s also negatively effected those I love, and how much this fucking sucks, this blog today is about that.
This going forward though in the future, will be to HELP others.
And it was it to me the sickest fucking cruelest joke ever personally, is that I could control to an extent even with my gastric bypass complications and mental health issues, was my serotonin because the ONLY high that I’ve ever experienced was from intense exercise, when I used to work out at an athletic level circa 2004-2007 and could’ve been a great sub-specializing in adaptive and rehabilitative fitness as a CPT, had not all this happen to me, as well as productive mother.
And being able to exercise that way, did make me a better parent before my complications and my circumstances made me be such a crappy one.
So this is where I figuratively stand right now, because literally standing and walking is way too painful most of the time (yes, I am grateful I still have my legs, though) after my life events and the events of the last 2 years, where I can’t control much around me nor can I control the abnormal physical responses my body has to the most basic of stimuli:
I hope though going forward, to continue being an activist for a more patient tailored approach to medicine and am appalled that there aren’t more resources for control of pain and resolution of more diseases and syndromes.
And to continue to write about that we as a society have to become more focused on mental health and removing the stigma of it, lifelong, starting when people are young, to help other people get evaluated and treatment for their issues that pose a threat to their lives or others.
Truthfully, it’s highly unlikely that I’m going to win the battles or the wars mentioned directly above, in my lifetime.
But setting at least somewhat of a foundation that can help others, is what I hope my legacy will be.
So please try to harder to understand with empathy, not necessarily me, but people like me, where we’re all trying to do the best we absolutely can, depending on our circumstances.
And as you can see not ONLY do our circumstances vary amongst us, they can quite vary IN us, if my life is to be any example of that.
Note: Again, this was a wordy blog, I get it. I’m looking for constructive dialogue. I’m not looking for any kind of personal help or advice.
Especially the kind of advice that’s food or fitness related.
And moving unfortunately isn’t an option, unless I win the lottery or figure out a way to make a lot of money with the disability sets that I have.
And in case it’s not evident and crystal clear in this blog, the meme featured is an example of how my life cannot be problem/resolution, and/or “set a goal til it’s completed oriented”.
Personally, professionally and most heartbreaking for me as a parent, is why I can’t be that way any longer.
I get that most people it’s unrelatable, this is for the few who can relate to at least some if it.
And for everyone else who judges because they can’t relate, to maybe make them more apathetic if they can’t be empathetic.
Because hopefully now it makes more sense how I am way more physically and mentally exhausted as a disabled person in a household of one, then I EVER was as a gainfully employed loving single mother of 2 and I needed the extra 2500 words of why, to explain that or why it’s not good to judge things just based upon what you think you see on the surface…
Editorial Note: I know the above was so wordy, but what is quite inspiring and gives me purpose as an activist is the life and work of Dr. Paul Kalanithi who wrote “When Breath Becomes Air”. I can’t believe someone who’s being and work can still inspire me as an activist that I thought of when I wrote this blog but failed to mention a the time I published this, even though his life and his work was a partially influential and in importance to this blog being written.
I think anyone who wants to see both the best and most tragic in human nature, but organically so, such as the devastation of cancer, especially in a person who could’ve himself as he had the skill and desire to help humans cure medical tragedies, could be possibly helped, if not being inspired by reading the book.
I guess I look at it, I can’t be like him or his wife, but I think most of us, can do even if it’s a little amount, to try and help someone else, especially if they’re inspired by someone’s legacy, whether it’s a loved one or a complete stranger who’s story inspired or helped you.
Again, I know this was super wordy.
I had to evaluate the benefit of writing this badly versus not writing it at all.