It's not what you are eating, it's what's eating you…

Archive for the ‘MEDICAL ADVOCACY’ Category

UNFORGIVABLE FOOD FAUX PAS!!!

sometimes-the-right-thing-for-you-is-the-wrong-thing-for-someone-else-quote-1

Disclaimers: There IS a medical foundation in this blog, so it bears mentioning that if one is in crisis medically, PLEASE contact 911 or emergency services in your area.

***

I don’t like surprises, like of ANY kind.

In my top 3 though, of surprises that I HATE, has to do with food.

So I’m reading my local news today and catch actually, an older article on a local couple who were suing their wedding vendors, because they wanted to surprise their guests with an all vegan meal but not reveal that it was vegan, until the end of the reception, last Spring.

Apparently not only did it taste terrible and not well made but some of the workers at the wedding, did actually admit prior to the meal being over, that the wedding was vegan mandated in accordance to the wishes of the bride.

I will defend until the day I  DIE, people having any kind of food beliefs for any reason.

FOR THEMSELVES!!!

One may want to eat a certain way for religious, spiritual, health and/or any other reason and one is a somewhat rationally minded adult (I’m not  talking in regards to people who have Pica, etc and NOT talking about parents with their OWN children who don’t like feeding them sugar, GMOs etc).

And that’s great, as it’s your body, your business, your life.

DO NOT EVER though, “surprise” anyone with one’s food philosophy, like NEVER EVER DO THAT!!!

And because where people have different types of adverse reactions to different foods, sometimes deadly allergies, and they don’t have a certain kind of dietary philosophy and trying to surprise someone with that, could end their life, if not cause unnecessary medical, physical and/or emotional distress.

It’s ironic as I was already going to write a blog of this nature, I was with a friend a couple of days ago and we were talking about our own wacky biological makeups.

She went into FULL anaphylactic shock, when eating a sample food, that had a small amount of an ingredient at a big box store, before she knew she was allergic to it.

While the pharmacy on site, gave her epinephrine, it DID NOT work, because she was on a beta blocker.

In my case, because I haven’t wanted to get tested and can’t get an epi-pen without it, I just ALWAYS carry around a full box of diphenhydramine (don’t ever do what I do, I’m a moron about not getting allergy tested, as well as taking 2 dozen of diphenhydramine which I tolerate okay but someone else could overdose) because sometimes different foods trigger a “glass shard” feeling in my throat.

And while I’ve been in full anaphylactic shock, due to a medication reaction, that was when I was  in labor with my youngest and I was in a hospital full of physicians when that happened and it STILL was terrifying.

It’s NEVER okay, for ANY reason to surprise people when it comes to ANYTHING they are ingesting and it could ACTUALLY be DEADLY, even if an epi-pen is available, if someone is on anti-arrhytmics, MAO inhibitors and/or beta blockers, as well as other medications in other therapy classes can render Epinephrine less effective.

As well if it’s not potentially deadly, it can be  illegal, such as people who make food items with marijuana or other substances, even if they don’t have intention to do harm.

But even if a food item or any ingredient in a food dish, isn’t deadly to a person, people have a right to know what they’re being served when it comes to ANY food someone is serving them, ALWAYS.

Note: I will only publish constructive feedback. And again, this is about serving unknown/undisclosed foods to people where one may NOT know their food allergies and/or just want to unduly influence someone’s way of eating because they feel they’re eating philosophy is superior to someone else’s.

I’m NOT  talking about parents who sneak in vegetables in their own kids smoothies, etc.  Thanks!!!

Advertisements

What it’s like to have lost control in ALMOST everything…

c52694c2f8432703bc5dca4dedf21df9

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…

Thanks!!!

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.

 

In hopes of that #KateSpade didn’t die in vain….

national-suicide-prevention-lifeline-tm-1-800-273-talk-8255-suicidepreventionlifeline-org-if-you-25731790

http://www.befrienders.org (International Suicide Prevention services outside the United States)

Important Disclaimers: I’m NOT  a clinically trained medical or mental health professional. IF you or someone you know is in danger of hurting themselves or others or potentially suicidal, please seek professional clinical help, immediately or contact 911.

I sadly learned way more about Kate Spade after her death yesterday, than I knew about her when she was alive, other than she created beautiful accessories.

I sadly learned way more information, all of us did after her tragic death, as far as in the circumstances regarding it,  than what we should’ve been privy to.

I don’t want to be a hypocrite, in the respect that I think her closest family and friends are due privacy, due to their tragic loss by writing about it, now.

What I hope to accomplish, because I am, so it wasn’t in vain, because details that shouldn’t be public are, that whether it’s famous people or non famous people, relationship problems are becoming more deadly, when people are experiencing romantic heartbreak, to  partner/s , parents, children both young and old, if not wiping out entire families, if not tragically ending other people’s lives, as well.

We HAVE to do better as a society from removing stigma and talking about how to better handle and cope with relationship heartbreak, rejection and rage and maybe then we can have some hope in reducing these senseless tragedies.

Because this is happening both with people who have known mental health issues and those who where there was NO known mental health issues and just suddenly “snapped” without any warning (which sometimes is truly the case, even if it wasn’t in this instance, depending on whether or not people closest to Kate who have talked and maybe SHOULD NOT have, publically), this can’t and shouldn’t continue to be an everyday occurance.

I can only hope going forward, we FINALLY have the important conversations in our society that we need to have, that we remove stigma from relationship endings and/or mental illness and that people can feel they can get evaluated and proper treatment for their depression, to reduce the chances of it  being potentially, if not actually being fatal to them and possibly others, without feeling stigmatized.

My thoughts are with Kate’s  (and anyone who might be triggered somehow or can relate) family, friends and fans.

Peace…

Note: Please, constructive feedback, ONLY. Thanks!!!

Hi, my name is Lisa and I’m NOT a drug addict….

IMG_20180524_235622_732

Disclaimers: I talk about opioid addictions, opioid tolerance, weight issues and other things that could potentially be sensitive to my readers and I understand that.

While this blog is personal in nature, I’m NOT just advocating for myself, especially after finding out some frustrating  news personally 2 days ago and real news about 5 minutes ago regarding the long term usage of opiate pain meds in those who suffer from severe chronic pain.

But,  I realize personally and as an activist, there’s been a lot of tragedies as of late, it’s not that I’m not sensitive to that and my heart hurts for people who’ve suffered unimaginable loss whether it’s due to addiction issues or such as the horrific tragedy in Santa Fe, as well as I have people that I know and care about who have themselves or loved ones,  life threatening conditions but don’t talk about them and never complain.

So please don’t read, if it could potentially be hurtful and hopefully you’ll respect that I’m NOT just trying to advocate for myself and I’m honestly not looking for sympathy.

And I apologize for how wordy this is. Not only is it tough to be concise for me, in a lot of pain, this is a topic that at best is a serious quality of life issue and at worst, possibly life or death, unnecessarily so, as I’ll thoroughly explain.

Thanks!!!

Editorial Note: After publishing, I realized I left out my normal disclaimer about seeking acute care for people in crisis by clinically trained professionals, I realize why I might have originally not thought to post it, given the fact that while I will ALWAYS advocate for people to be under the guidance of of clinically medical or mental health professionals, the topic of the blog is about the failure of a lot of a physicians, while well intentioned from a lot of them,  when it comes to being adverse to dispensing opioids, I’m NOT a clinically trained professional, I can only give my opinions on matters, but NOT medical and mental health advice, evaluation and treatment should ONLY should be taken from a professional,  in an appropriate setting and if someone is in crisis, they need to contact 911 (and or emergency services in their country of residence for out of country readers).

I apologize for omitting the above.

***

In HER defense, she did WARN me.

Meaning. when I was first put on pain meds, a little over 14 years ago, my long term primary care physician after the majority of non narcotic pain meds,  pain management and anti-seizure meds like Neurontin, among other prevention pain meds, I was warned that eventually, if I was on them long enough, they would no longer work.

I’ve had a long history prior to EVER being on these meds, of being strangely over tolerant or prone to the worst side effects of so many meds in all different therapy classes and all delivery systems, when I had 4 epidurals prior to my son being born (none of them worked) over 25 years ago, nearly dying in labor over 15 years ago due to anaphylaxis because the 1st 2 epidurals didn’t work, the 3rd one for 45 minutes and the 4th one sending me into anaphylactic shock(which she, my pcp/prescribing doctor for all my meds is FULLY aware/has witnessed, as she delivered my daughter) and, I’m not easily anesthesized  with either general or  local anesthesia.

I’ve wrote more than one blog about opiates both personally and as an activist, as well as the labelling I’ve dealt with both post bariatric surgery and post suicide attempt which was almost 10 years ago (well, in August) especially once being diagnosed with mental health issues.

As well as being honest about having an addictive personality, in my case it’s tobacco and sometimes food.

I suffer from severe daily headaches (which opiates actually make worse) fibro, degenerative disc and severe neuropathic pain, both widespread and locally.

I gained 30 lbs (more about weight in another blog) starting in late 2016 throughout 2017.

However when my bilateral neuropathic foot pain (It’s not diabetic, been tested for that I am b12 deficient, the lowest it’s been since my reversal) got so bad 7 months ago, it kind of mentally broke me.

In my fitness heyday, I used to get an endorphin high from intense exercise, working out at an athletic level prior to 2007.

When I resumed walking again in 2014, I got the reward of that I could still walk.

It would hurt like HELL, afterwards, as my degenerative disc sits on my sciatic nerve, but I had a sense of accomplishment for someone who did so little and because I have a tendency to wildly fluctuate in weight post reversal but found my groove with walking lost over 50 lbs in 2015 (and at that time was over 60 lbs from my all time heaviest) and while I didn’t feel the greatest, carrying less weight at least helped with rib pain, as I have a tendency to carry a lot of weight in my midsection and have rib pain as a result of it.

And in the last 2 months alone, I’ve resorted to food (not eating tons but with metabolism issues to justify how much weight I’ve gained) gained another 30 lbs and am the heaviest I’ve been in the last 8 1/2 years (which I’ll also write another blog about).

About 7 months ago I found any walking caused an enormous amount of severe neuropathic foot pain, that made walking not worth it, as I started a walk, in the same amount of awful additional pain like I used to feel at the end of a long walk (I used to average 20-40 miles in a week until late Fall of 2017).

It put me at risk for falling, which I have. It put me with having such intractable severe pain widespread and locally to the point my medications which is a fairly high dose (not subjective as I’m on a higher dose than most post surgical patients but less than pallative/hospice care) that my current medication regimen couldn’t touch the pain I was in.

It also put me in more physical pain that’s unbearable 99% of the time and even if I don’t complain (which truthfully I do complain a lot) it emanates out of me, as sometimes I’m in so much pain, I can’t breathe (it’s not cardiac or pulmonary) or speak and I’m unintentionally even if I try to hide it, scaring those who see or care about me the most.

I still get a controlled amount of medication not exceeding MMEs for severe chronic pain peeps.

I get 2 doses a day.

I’m not saying how much medication I’m on, in strength or what I’m on.

I’ve noticed for the last 2 years (it’s been 3 or 4 since my strength got raised) that for a high dose, it didn’t work well.

The last 2 months especially, I’ve noticed that it was super hit or miss if the meds worked at all, not even helping with being so inactive and being so limited on the most basic of things to do for myself, such as walking and shopping by myself that I stopped doing that, if I had to do that by myself.

I would every 6 months or so for the last 2 years I’d ask my doctor if I could go higher in my strength.

Then finally with the fact that I’d have trouble losing this weight given how much severe pain I’m in the last time, I finally asked on Wednesday not being able to bear this, with my physician,  if BOTH my dose and frequency could be raised, as any less than my current strength, doesn’t work very well.

I get the pressure that doctors up against with the opioid crisis, I’m not going to repeat myself, I’ve discussed this in MANY other blogs, as well as I’m not insensitive to the horrific deaths that of occurred because of it.

The problem is some people who wouldn’t be looking for a dealer normally now, are starting to die, because they are in so much pain, that when they get pulled off their meds, suddenly they don’t know how to cope with such severe life limiting pain, so some people are dying, tragically, because even though they were compliant with their pain meds, once pulled off, they don’t see any other option than finding a dealer to get illegal substances and are now accidentally are overdosing or at risk for that and addiction, where they wouldn’t be otherwise, if opiates weren’t so stigmatized, overregulated and not option now for those who aren’t terminal, even if they tried all kinds of therapies like I have and non opioid/narcotic/controlled substances but they didn’t work.

And while I know from the pain, I live in a place where drug addiction and unfortunately accidental overdoses is rampant. My local EMS people are probably in my apartment building because of that, about 3-4 times a week administering Naloxone.

Not everyone in my building or on my block is a drug addict or distributor but quite a few are.

And it’s terrifying to live amongst them, if I’m truthful, even if I’m empathetic to their disease, as far as the addicts are concerned.

When I talked to my physician in the morning on Wednesday, she really was at a loss what to do with my opiate tolerance, she knows I don’t get high from narcs, she didn’t feel comfortable raising my meds, at first suggested either other opiates that I haven’t tolerated well, if not terribly and then asked if she could consult her pain management specialist at her facility and call me back that evening.

Which when she did call me back Wednesday evening, I found that I’m going to be taken off my medications (I’m on other controlled substances which I still receive a therapeutic benefit) being given the opiate party line that most providers are using now.

I’m NOT mad at her. I know she is doing what she only feels is right, ethically.

And she always has had a holistic approach to health.

And while we always respectfully agree to disagree, I vehemently disagree with this decision given the dire consequences it’s already going to have on my life that’s been reduced beyond recognition, something she would know, as she’s been treating me for so long.

I ONLY found out early Friday morning, that Medicare and a lot of health insurance companies are no longer going to cover opiates in any other case except cancer or terminal cases, starting in 2019.

Ironically, prior to knowing my medication status from a prescribing and insurance perspective, after mulling it over for the last 2 years, 2 weeks ago I signed a DNR.

I haven’t been able though to leave my home or get out far enough by myself to get my DNR notarized and filed, because my pain levels are too high.

When I last saw my primary care physician at an appointment, in  the end of March of 2018, I asked her about it and she said that she would do her end and  that she respected my right to choose that.

It’s pretty extensive DNR that I’ve filled out, NO life saving or life extending measures of any kind.

Only comfort care measures are in my DNR.

And guess what, the person who has all these issues with oral medications, is super sensitive to most  IV meds, including narcotics, most I can’t tolerate at all, others I have to be treated for migraines and hives, so it’s good all of that’s in my DNR, if I can’t speak on my behalf, it will for me.

I’m NOT suicidal.

I don’t get a choice of disability sets, and how they are rapidly changing me medically and cognitive  I don’t get a choice at all going forward, of therapeutic treatments, but thank goodness at the age of 48, I get a say so on WHEN I can die, if it’s not mental health related.

And it’s NOT.

I feel terrified and devastated , like I’m sure other people who are in similar situations like I am, where they’re going to lose meds that are a last resort but help so much in quality of life and they are going to spend the rest of their lives in unbearable pain.

AGAIN, this is NOT about being insensitive to the opiate crisis and the deaths from that.

This has EVERYTHING to do with physicians, government and insurers saying because I’m not a drug addict, I don’t get anything even though pain meds for me were a last resort.

I’ve said as an activist, wisely, in the past,  that “you can’t legislate addiction away”.

Even more sadly,  is that I get that if I wasn’t lucky enough to escape intractable severe pain, at least I was spared an addiction to drugs and in my case I’m committed that if I can’t get pain relief from a physician where the meds and my usage is monitored, that I don’t want the HELL, that comes from the desperation that both legal and illegal opioid addiction creates, nor do I want to die that way.

I see how bad it is to live that way, where I live and I just don’t want any part of that, but am grateful that it is still a choice for me and I get that it isn’t for everyone.

I’m also not mad, nor am I saying with malice, had I become addicted to pills and then found a dealer and became addicted to illegal substances,  I’d get methadone or Suboxone.

BUT, because I’m not a addicted to drugs, I am NOW going to get NOTHING.

Again, I’m not saying anything to try and hurt those who’ve lost loved ones due to opioid addiction.

But all sides of the Opioid Epidemic should be heard, including those who are going to be victims being sentenced to a life of uncontrollable severe pain because they’ve exhausted other therapies and nothing else works for them.

Because while it’s well intentioned at best, it’s repugnant at worst, getting rid of the ability to access opiates safely and affordably and with monitoring,  will ONLY make the opioid crisis worse for almost everyone, as some people will skip even mentioning having pain and go straight to dealers, as well as it’s going to be a deadly dangerous dealers market, with prohibition of access to safely allocation and monitoring of legal opioids.

Not only at best is it  naive to think this doesn’t warrant more of a discussion on how to deal with those in crisis with drugs, it’s deadly and just going to feed into the epidemic more of more people becoming addicted to street drugs, no longer  having safe access with monitoring of legal opiates, even if they were compliant.

And those of us in crisis or could be, due to unbearable pain and have to live the rest of our lives that way, going forward who are no longer going to be able to access medications that give us any kind of quality of life, who are responsibly using them, is a travesty, don’t think it’s anything other than that, and as I said above, has the potential to have deadly consequences on people who normally wouldn’t engage in such unsafe behaviors but can’t handle a life with such severity of pain and no safe options, any longer.

I can only use my voice and hope that other patients, physicians, pharmacists and others who have similar concerns, speak up as well, to rethink how to best serve those in crisis and not put people in jeopardy like they are now, who wouldn’t normally be at risk but are now.

Note: I will ONLY publish constructive feedback or dialogue. And again, I apologize for how wordy this was, but there is so much at stake, not just for myself, as I’ve stated repeatedly but thousands and thousands of people.

When “our doves” die- An honest human discussion about living and sometimes dying from addiction… #stigmakills

267c2f40ab4409c6f5d1bf4f038904d4

(for my international readers http://www.befrienders.org)

*Important Disclaimers: I’m not a clinically trained or credentialed medical or mental health professional, nor am I am a professionally trained in matters of law enforcement or public safety. I will ALWAYS encourage people in crisis to seek acute professional help in an appropriate setting or if necessary, contact emergency services.

(There also will be profanity, in this blog and honest talk about living and dying from addiction and the human predilection for addiction, if that’s offensive, PLEASE don’t read) *

I won’t BACK down!!!

Shit, wrong artist!!!

NO, I’m not being glib.

On this second anniversary of Prince’s death, where initially, I had a fear that I didn’t want Prince to be the poster child for accidental illegal drug overdose, I decided it was more important as an activist to make sure he didn’t die in vain.

It was driven home more, when Tom Petty died under similar circumstances, involving the drug Fentanyl last year, as well as other famous beloved people, as well as those of us who lose loved ones in death or in the depths of despair due to drug addiction, every year.

I’ve gone on record, so to speak, in past blogs in greater detail, that I think Fentanyl is a fucking EVIL drug.

Heroin is, too.

But any substance or entity that can cause addictive behaviors in humans that ruin their lives, if not end them, can be considered “evil”, to at least someone.

I tried before starting this blog, to find a “quote meme” that would do addiction “justice” on this 2nd anniversary of Prince’s death and for anyone who could relate.

I defaulted to above “meme” only because I figured I’d be better serving my readers, resources, as well as trying to be a part of the dialogue on honest talk about addiction.

I have addiction issues and an addictive personality.

I ONLY escaped drug addiction, due to the either horrific side effects of them or because I metabolize other drugs (prescription and/or not illegal) so quickly, that it’s difficult physiologically to build up an addiction to them.

I’m only injecting my personal issues with addiction, as this is a blog, it’s not an article and it’s not something that would be too helpful for me to go on in more detail, like I have in previous blogs about my own personal demons, which I have.

But it would be disingenous to write a blog about addiction in others, without disclosing my own issues, at least acknowledging that they most definitely exist.

Living in the hometown of Prince, there is a celebration of his life this weekend, on this 2nd anniversary of his death and I get why for all of those who loved him and his music, of why that’s so important to take place.

But if I’m going to be honest, even though I’m not a super fan, as much as I know about addiction and human strengths and human frailities, there’s a part of me that’s SO angry, that he’s gone.

As well as now, Tom Petty, like I said before.

Or my friend “N” who died almost 6 years ago, when in medical crisis, she developed an addiction after being on IV narcs due to extended hospitalizations and ended up with a heroin addiction, that NO ONE knew about, until she accidently overdosed from a bad batch of Heroin.

I consider myself “lucky” to a certain extent, as much as anyone who suffers and has to deal day to day with severe persistent mental health issues and intractable severe widespread and localized physical pain, that drugs never became a crisis situation for me, either living with a drug addiction or nearly dying from one, other than my suicide attempt almost 10 years ago, where I tried to intentionally overdose on prescribed narcotics for me.

But I think of Prince or my friend N and they died before they could see so many things, as locals to Minneapolis, as well as anyone who loses loved ones due to addiction.

As far as Prince, he missed U.S Bank Stadium being finally completed, he missed  “52”!!!

I don’t think and I’m not trying to come of self serving, that I don’t get as mad about the genius of him and his ability to create music that we could related to, being cut so short, as much as I get angry and sad, about his right to would’ve been to live his life, that was cut short, due to the depth of an addiction, that really NO ONE could’ve said, could’ve been avoided.

What exactly do I mean by that???

Because most people if they don’t have severe chronic pain OR they are afraid of using any kind of opiate or strong presciption pain medication or wouldn’t think of using any kind of street drug, have NO idea of what it’s like to not only be a slave to addiction, but to be in so much pain physically, that it alone becomes soul crushing and then you add addiction to a substance/s on top of it.

What’s exactly the answer to this then, with addiction to drugs or anything else, that ruins people’s lives, if NOT, actually ENDS them???

Because while people can try to legislate any substance or anything that can be abused or cause a fatality/fatalities, a wise blogger once said (ME!!!) that “You CANNOT legislate addiction, AWAY”.

Not everything that causes addiction in one person, will cause addiction in another.

I can’t say what the cure or the answer is to addiction of drugs (prescription or illegal) or any kind of addiction that ruins lives, if not ends them.

What’s in the root of addiction and what the recovery of what one’s person’s addiction will look like, will vary being as unique, as we all are.

But we have to acknowledge that most humans are addicted to something and try to find different alternative approaches to prevention, evaluation and treatment of addictions.

That CANNOT happen though, with moral judgements and/or stigma.

Note: Constructive feedback, ONLY, please. Thanks!!!

 

 

A kinda (but positive) belated review of UR/ER for HCMC/#hennepinhealthcare…

11822395_1148208261863238_1381719068116039843_n

Disclaimers; I’m writing this blog in hopes that it helps both patients and providers of what used to be formerly called Hennepin County Medical Center but is now called Hennepin Healthcare.

The last blog that I did about HCMC, was NOT good in 2014. It wasn’t because a doctor that I had seen who was super kind, but she refused to treat me at all in the Urgent Care even though I didn’t want to go to their ER, so I left without any care, because their ER did and still scares me, but hopefully the insight I give can help what was great respectful attention by their physicians, something I’m not used to getting as a former “frequent flyer” at Fairview University Medical Center, for teaching purposes, if they or other patients who are local can find any value in this blog.

***

February of 2018 was not a fun a month medically or with anxiety.

I’m not shy about being a medical activist of sorts, but one who loathes seeking ANY kind of medical attention at all, but especially with any provider that I have no previous history with, such as my Fairview PCP who’s been my doctor for like almost 20 years now, but is 50 miles away from where I live.

I’m a complex patient with a lot of quirks.

The one good thing is I am fully aware of what my barriers are and at the same time can identify pretty clearly what’s a barrier but also what could be a potential medical event in me.

I ended up with an episode of A-fib with no cardiac history that actually didn’t send me to the UR or ER about 2 weeks prior to the visit I had on 2-28-2018.

I did end up going to the Urgent Care originally on that date when I had severe radiating upper quadrant pain and for a long term gastric bypass (and reversal!!!) patient, I still not only have my gallbladder, but appendix and tonsils, pretty much all my parts I was born with.

The nice urgent care PA that I saw originally did want to send me over to the ER. He knew my hesitancy though, so he did everything to rule out stuff he could in the Urgent Care by doing an EKG and chest x-ray which was normal and then he strongly suggested I go over there and this time I decided to do so, knowing my youngest’s birthday was in 4 weeks and if something was wrong but easily correctable, I didn’t want to be super sick and ruin her birthday.

The hardest part for seeking medical attention in an acute care setting truthfully boiled down to this particular reason:

Last time I was in an ER was at HCMC in 11/2014, 2 days prior to above mentioned UR visit first due to intractable projectile vomiting then for what felt like could be pneumonia or apsirating the vomiting.

Last time I was in an ER at FUMC was over 5 years ago and it was so bad, the ER doctor treated me like a drug seeking hypochondriac who resented that I got my PCP involved and sent me home not knowing I’d be stuck having to get home in a cold snow storm walking while weak and in an altered state of consciousness due to severe pain for a mile,  prior to the Blue Line being built as I couldn’t obtail a medical ride home (something I’m eligble for but there was no availability at that time of night) , got lost on campus and it took me 2 hours to find a bus that would get me home, even though I only live 2 miles away and put me at further risk.

I never held against that doctor of not suspecting at the time my medical event, which was to get worse was due to an IUD (Mirena, which I ended up Mirena crashing) but I had a lot of severe symptoms such as projectile vomiting blood and intractable atypical migraines (for me, as I do have a migraine history) that she didn’t run one diagnostic on me, in 2/2013.

Truthfully the nurse I ended up having last month was kind of a jerk (I’ll elaborate more, later).  I was nervous and slightly wordy and I think I got on his nerves.

The resident and the doctor in charge though of the ER, was AWESOME.

They were patient and kind, they took me at my word (it also helped with my history of not seeking frequently acute attention) that I was in a lot of unusual pain for me.

They didn’t label me and they didn’t make me feel bad, being at a level 1 trauma center, when it ended up being a potential gallbladder attack.

The ONLY disconcerting thing about the visit was that my anxiety was high because there was patients who were out of control, such as one screaming patient being restrained to a gurney, the other was screaming and wandering around the ER.

When that happened, I did tell my nurse I was going to have a cigarette because I was having an enormous amount of anxiety and a terrible panic attack and when I went to do that the first time, the nurse was kind of a jerk.

FUMC will NOT let you out of the ER, once you’re roomed and I sorta get it, unless you’re not on IV narcs which I wasn’t on nor was I asking for.

But the nurse didn’t seem to understand that with other wandering patients, I didn’t want to appear to be a security risk, as a stupid smoker nor did I want any doctors having to go look for me, as I had a diagnostic that still needed to be done.

When the 2nd time I went to have a cigarette and told the same uncaring nurse, the resident in charge of my care, overheard and said that she would be in after I came back.

She made no judgement about my smoking outside, when in an ER, she got that I was trying to be respectful of her time and was super kind, respectful and caring.

Because I live only 2 blocks away and my anxiety was high, it was okay with her, after my ultrasound that showed gallstones, that I could go home, but with the understanding I’d come back if there was something wrong with my bloodwork, which I appreciated.

A few days later when I spoke to my PCP on the phone and was explaining the difference in quality of care between hospital systems, because I needed a referral to a general surgeon for a potential cholesysectomy, if not a hernia repair (I’ve had a hernia for the last 7 years because of my open rny reversal) she asked what hospital to do it for.

She understood that I’d rather go to a hospital where the patients scare me a lot. than the doctors do. That I’d be okay with an outpatient procedure at HCMC vs. FUMC because the quality of care in consideration, is better.

I don’t think either hospital system is going to read this blog, even though I will forward it to HCMC, okay, now called Hennepin Healthcare, as while it’s not for me to second guess a hospital that has a psych ER, of why patients are in a medical unit, maybe that needs to be addressed first as medical issues being addressed, before they get transferred to psych.

But I am good patient. I’m honest that I’m not fully compliant in things. I know my traits, such as if I’m nervous, even if I’m sick, will make anxiety prone and pace and I’ll explain that to medical staff, in case it scares them.

I’m also super polite and respectful of authority unless a doctor treats me like total crap and while I can be blunt and abrasive, I’m not abusive nor do I have any violent tendancies other than I can be mean in my wording, when super provoked, and if that happens (which it has multiple times in the ER at FUMC, I’ve just disconnected an IV in an ER of saline and gone home, that’s it, it’s a big deal but doesn’t make me a safety threat to anyone other than myself but I get treated like I’m a safety threat potentially to the entire hospital, short of security being called).

The only thing I do want to get across to Hennepin Healthcare, is that truthfully, even though I’m a mental and medical health advocate and blogger, I AM afraid to be in their ER and I’m afraid to have an inpatient procedure there, as truthfully I’d admit, I’m not above being admitted and wanting, if not leaving,  to go home, if I’m scared enough and I get that where that can be disconcerting if not a liability to a hospital, but I can’t stay somewhere when vulnerable but not feeling safe.

But I’ll take my chances at Hennepin Healthcare vs. FUMC  where I trust that the respect will be there and I’m not so quick to be labeled.

At least if it’s outpatient care and that’s something I hope they will address further within their hospital as far as potential safety risks to patients and appreciate that the time I’ve taken, because I wasn’t given any kind of followup inquiry on how the service was for that UR/ER visit, that they take both in consideration my appreciation of their kindness but my fear of unstable patients not being monitored closely and a burnt out ER nurse who had absolutely NO reason to be rude to me.

Note: I realize this was SUPER  wordy. I couldn’t convey anything of due importance in giving feedback that read like a Tweet.

What are you DOING when NO ONE is looking???

fdf40b107a5a39bf4bbc404a59ebb21b

Disclaimers: While this blog is both a combination personal blog, as well as to achieve some activism type of goals, when it comes to medical, mental health and public safety, I will ALWAYS implore people, when in crisis, to seek clinically trained professional help if they are or they suspect someone else is in crisis, immediately and or call 911 (because 1/2 my readers are outside of the U.S./North America, and/or Emergency Services in one’s country of residence). Thanks.

OR, may I ask, with NO expection of an answer to me, what are you actually THINKING, when NO ONE else is looking?

Because it matters.

A LOT.

In my case,  and it will be also a topic for another blog, as far as it applies to social media and my loathing and fear of social media.

In my case, what I do and what I think, is usually done in the privacy of my own home.

My blogs from the last month, whether they talked about people in crisis of all different types, where most of my blogs were concentrated on those who’s thinking and actions, lead to fatalities, in innocent others.

Also a few of my blogs of last month, were in regards to Superbowl 52, which was exactly a month ago, that occured 4 1/2 blocks from where I live.

It feels like both yesterday and 100 years ago, that Superbowl 52, took place, which I didn’t care for, because I was afraid of something bad happening and I don’t like being in the spotlight in any way or any kind of attention, which meant for the 2 weeks around Superbowl Sunday, I became super reclusive, even for me, in the era of smartphone cameras, as well as global networks being in my neighborhood.

As well as the tragic massacre in Parkland, Florida that happened, 10 days later.

Unfortunately, but so gratefully, I’m lucky that if I don’t feel well, I don’t have to do anything.

And when I feel my worst medically and mentally, not only do I have to not  do anything, just try to deal with my medical and emotional pain, I don’t do anything else, even though that my medical and mental emotional pain is only a hindrance to myself, even though I usually respond to various help queries, everyday.

I realize that most people, don’t have the luxury of both time and privacy, that I have.

The last major BEST decision though, I made for myself, is to disengage, as much as possible,  from social media.

Without quitting it completely.

And in my case, I’ve never felt that I’m in competition with ANYONE, which I think social media drives.

But in my case, social media, for how I used it, would be a really bad and sad reminder of my failures compared to my FORMER self, which is the only competition I put on myself and fail miserably,  of how functional and productive I used to be, prior to the last 11-12 years of my life, which is now a quarter of my life, now that I’m 48 years old.

Most people, the few of them that I encounter, are  kind of surprised of what I’ve chosen to do with this little life that I have.

Lots of times, I don’t feel well enough to go anywhere or do much, but possess a strange skill set and a desire to help people in medical and/or mental health crisis (with the urging they have to be under the care of clinically trained professionals, which I’m not) and that I’m kinda good at it, with obvious boundaries for myself and others, for what I’m willing and capable of doing, in the areas I do activism for, and where I help people when they email me for help.

It takes a lot of unnecessary pressure off, when people focus to do things, with an absence of social media, either to NOT  be motivated by it, in attempts to NOT  be an influencer and to NOTto have it as a default distraction.

Even if someone makes a living off of social media, no one needs to make their complete lives on it.

When I tell other clinical professionals who I don’t know, in the medical and/or mental health realm what I do or ask what I can do better when I run across them, in my advocacy, I do find that most of the time, my inability to be influenced by social media and/or let anyone influence me, in any way, that what I don’t do or do and/or what I do say and or don’t say, is driven soley by myself, they find the most challenging thing in dealing with me.

WHY, though???

I’m hardly an admirable person, by any account.

I’m not looking to be, nor am I someone to be looked up to.

But I’m not someone to be feared, either.

I know how my disabilities can be of a negative effect on me and/or when provoked, makes me mean to others, which is all I’m capable of.

I’ve made some AWFUL decisions, which I still can do stupid things on occasion but am honest, but I also I make a lot of good ones, in hoping to do the right thing.

When NO ONE is looking.

I don’t understand though, as I don’t judge others who find that the various social media platforms, DO  have a strong influence on how they conduct their lives.

It just DOES NOT for me.

It can’t.

I came into having medical, mental health and cognitive defects by various complex organic, circumstancial and environmental reasons.

I don’t need and it would be a disaster for me and I do believe it does hinder other’s health and wellbeing, being so emotionally, mentally and cognitively dependent on all the things that go along with having a social media and technology driven society, now a days.

It’s not like we can go back in time and change the technologies outcomes both good and bad.

But it’s not too late, to make more of what’s on social media, that does a greater good for people, that doesn’t effect desired financial outcomes, which not all of it is bad, other than the intentional addiction seeking behavior of some technical products and services.

But these are the following the questions, that people have to ask themselves, given the fact that even people, who have done so much good in their lives, are ending their lives and others lives, both intentionally and maliciously or not,  or they interfere in multiple ways, for others right to the sanctity of life, with peace of mind, in the worst ways possible.

So here it goes:

What are you doing and thinking, that could be hurtful to oneself or others, that might have a foundation in a social media driven society and what can you do, to make it less harmful for yourselves and other people?

Can you ask for genuine help and get it, from clinical medical health and mental professionals, as well as families and/or peers when in distress or crisis?

And if you can’t or choose NOT to get any kind of help, how does that adversely and/or can you positively change the outcome of your own thought processes so it doesn’t lead to negative action on oneself or another, all the time, some of the time and on rare occasions?

Asking and knowing why, it makes the difference of why it matters, of the dependence in thinking of others knowing what you say, do and what you look like when you do them, due to our social media driven society and knowing what’s good about it and what is even unintentionally harmful to self or others, in this day and age.

There is NO ego with this blog.

I’m the first one to admit, I have way more questions than valid helpful answers, in trying to help those in crisis, not hurt themselves or others.

All I’m trying to do with my own disabilities, bad choices and my own flaws and as well as the few strengths that I have, is to help myself and to help others, in things that matter the most, in what I’m able to so little but try to contribute somehow, positively.

No one has to answer the above questions out loud, to me or another, unless someone is a danger to themselves or others, which will require acute professional help.

But the questions asked above are worthy of asking yourself and evaluating, of how, what, where and why, you think of  yourself and others, when they’re not looking, in good ways and bad.

Or the when and why, you’re actually driven to make or want  them to look at what you’re doing and saying and how you look, when you’re doing that.

Note: I’m all for constructive feedback, which can be a difference of opinion, as long as it’s shared respectfully. Thanks!!!

Tag Cloud