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

Archive for November, 2014

Ten………


parenting

https://www.youtube.com/watch?v=O8vzbezVru4

This is the blog I’ve wanted to write for the last 9 months. About what was amazing in 2004 (and part of 2005) the little that was not amazing but that my children and I were still together and living a fairly fully functional life. While I have talked  about what happened with my children and I, at my sickest,7 1/2 years ago til the present time. I’ve really never gone into detail like I would’ve liked to, when life was fairly good for all 3 of us. In the beginning of 2004, I was still working full time. Zoe was in a licensed daycare facility near our apartment, my son who was in the 5th grade went to before and after school daycare. He was also in sports, Hebrew School and Cub Scouts.

We lived though in a beautiful 2 bedroom, 2 bathroom apartment that had also a den and underground parking that was in a nice upscale suburb with good schools near a regional park in Plymouth, Minnesota. Zoe was a very easy baby, but she was late on a lot of milestones, such as crawling, walking and talking. That was largely attributed to having a high risk pregnancy (hyperemesis gravidarum, which I also had with Zachary and it’s the same condition Kate Middleton has) and getting pregnant with her so soon after my gastric bypass in December of 2001.

While I ended up having issues with abdominal pain and vomiting post pregnancy, I just attributed to my gastric bypass. I was way too busy to do anything about it, as far as getting medical attention for myself, because I had to plan for when I’d miss days at work due to my children being sick and/or needing medical care. But Zoe did end up catching up, slowly at first. But we had a full, fun and loving life. I’ve always been a complainer about something. But I never complained about my children. They were both easy going and I found my life as a single mother compared to my friends who were married and raising children or to me, which was worse, fighting with a divorced spouse  about every aspect of their kids lives, much easier than theirs. While I had all the responsibilities that go with child rearing, the choices were all mine to make and I didn’t have to share my beautiful, funny and loving kids with anyone else.

Winter of 2004, started wearing on me with all the activity, having lost 80+ lbs (part of that when still pregnant and I didn’t gain any pregnancy weight, same applied with Zachary though, due to the hyperemesis). I had been put on the year before, after Zoe’s birth, once I went back to work, put on Zoloft, because I did have a lot of stress and I had a very stressful job. 2 days after Zoe’s 1st birthday I became really sick. Intractable projectile vomiting which landed me in the hospital for 5 days. At the hospital I had my children at which was NOT the hospital I had my gastric bypass at. But it was my 1st hospitalization due to complications from my gastric bypass.  I had just heard from my employer the week before that we were going to laid off in 2 months.

After I gotten out of the hospital I ended up returning to work and getting “laid off” (I technically was fired for “absenteeism” and threatened to sue my former employer which was a EVIL huge conglomerate and they were willing to settle with paying me a severance package and I was able to collect unemployment that was uncontested and be able to say that I was laid off as I was in the process of trying to start an FMLA case and they fired me a day and half after I returned to work from my hospitalization).

Also around the time of Zoe’s 1st birthday, I had met what I thought was a really nice man and it became serious. It was very intense relationship while great at first and he was great with my kids (Zachary though absolutely HATED him) and after I left my job, it left me time to be able to focus on my children, as I had been really good with money and between savings and unemployment and that I had always had a car, we could go places and do things and we had still a fairly comfortable life.

In late Spring of 2004, the kids and I went to Great Wolf Lodge in the Wisconsin Dells, just the 3 of us. And I spent the first few months of the summer of either just Zoe and I or all 3 of us, going 3 hours to southwestern Minnesota to visit my boyfriend where he lived. Zachary,  because he didn’t have a great love for my boyfriend, would sometimes stay with my parents. My relationship with my boyfriend ended mid summer of 2004. While it was a blessing in disguise, I didn’t see it right away and I was fairly depressed as we had talked about getting married, it was easier to get over when my very astute 11 1/2 year old son at the time would tell me that we were better off without him because he was looking for a family to control.

To get over my breakup with my boyfriend, I decided to pick up exercise.I joined a gym and ordered “Core Secrets” off an informercial (balance ball work with weights dvd by a celebrity personal trainer, Gunnar Peterson)  I figured it would be a good distraction and I had tried before I left my former employer to have a panniculectomy and it had been denied. But I for the most part was happy at being a size 9/10 in jeans and about a medium in tops, dresses and jackets. I just figured it would help to tone. NEVER in a million years did I think I’d end up loving exercise as much as I did. I’d go the gym in the mornings and Zoe would love to play with the other kids there. About 2 months after I had started, not only did I get really toned, I went down another 4 sizes and a month later, hit would be size 2/4 average, I was until late 2007.

Summer came to an end and Fall of 2004 began.  Zachary was starting middle school. Zoe and I still were in ECFE, a playgroup and I still went to the gym every morning (a local YMCA). When I found that I could work out fairly intensely, I joined another gym, Lifetime (meaning I NOW belonged to TWO gyms that I worked out at both, almost everyday) and had decided to go to school to be a Certified Personal Trainer.

So I enrolled in NASM’s CPT+ course online. While I’ve talked about in other blogs about both the positives and negatives of major weight loss, I had wanted to be a trainer to help those find a love of exercise, even if they couldn’t work at an athletic level that I was able to work up to. I figured I could do adaptive and rehabilitative training for those who wanted to use exercise for stress relief or for weight loss, but didn’t necessarily want to have weight loss surgery. And I figured by sub-specializing, for people who had medical health issues or barriers, it would make it more interesting and was networking with local bariatric surgeons to do work for them as I also was writing a program to help people lose weight without having a surgical intervention.

So while I still was getting sicker, we lived a full life. Zach had less exta-curricular activities in middle school. But he had friends, I still had my friends and we as a family, went to a lot of places and did a lot of things. If you would have asked people, in 2004, or if they knew my children and I, and could see how bonded we were as a family that we’d end up apart somehow, most would tell you that they wouldn’t believe it. BUT, I was NEVER a conventional mother. And I did smoke. So I was never a part of the “Minivan Mommy Brigade”. Because I still didn’t fit in.

At my heaviest before my gastric bypass, before Zoe was born, I was an oddity but I was a VERY pro-active full time employed single mother who was present at Zach’s school, cub scouts and Hebrew School. Once I had my gastric bypass, I noticed that more mothers were at cub scout meetings. I was never a threat to another woman’s husband though. And once I got pregnant again and had Zoe, no one REALLY knew what to make of me as a mother. As a “nice”  Jewish girl from an upper middle class family having, one child, never being married was an oddity, having 2 children with 2 different fathers was just unheard of.

I’d get a lot of strange questions in 2004 for different reasons. I was still getting unwanted comments about my weight, especially when I got thinner and fitter than anyone would imagine. I also got comments that were NONE of people’s business about my children. Were they mistakes? Really??? I don’t like hearing the word “mistake” now, and I’m not raising them. I would call my children my “surprise blessings” (which I still do) and when people would sometimes ask about their fathers or if I was having anymore children, I’d change the subject. BECAUSE it was NO ONE’s BUSINESS.  But as personal as a question like that was, I got asked it a lot more than anyone would think.

This was just a blip or a glimpse of what life was like ten years ago for me. My children and I loved each other dearly and we were very bonded. I knew where they were at every second of every day.  I was starting to build a business. But I was able to manage a household and was fairly responsible. Wasn’t perfect by any means. But my children were my world and my professional aspirations were to support a plan of being able to provide them a better life and I had all the makings for a successful business in the works, both bariatric specializing and other professional opportunities.

To go from that and having to live with the fact that I lost everything in 2008, but more importantly, abilities, is what I struggle the most. I am not trying to offend my readers, my friends and my family and those who’ve battled catastrophic circumstances. Or lose loved ones. I get it. My medical and mental health was the “natural disaster” for my family, though.

There are not many terms to describe parents who are no longer pro-actively in their children’s lives. If a mother gives up a baby for adoption, they are birth moms. If a father is absent, he’s called a deadbeat dad. And birth moms and absent fathers there are initiatives for and support. There are none for mothers like me. The only word that people use for a mother who didn’t know some of her disabilities going into parenthood and lost quite a few of them when drowning in medical and mental health issues and gives up their kids (I have sole legal custody, technically, of my 11 year old daughter and my son is an adult) to commit suicide and can’t be the absolute best person to raise their kids, if they should survive that and more medical,mental health and cognitive disability. There’s one word that I usually get called.

And that word is MONSTER.

I hope now this explains why, in 2014, while I know just how lucky I am, while I know things could be much worse, as they have been.And I don’t take anything for granted. But I NEVER did.  I can’t stop being in mourning my old life, TEN years ago and I can’t believe it got to the point where I still was where I was FIVE years ago. But I am still trying, to the best of my ability to live a life that has some meaning. I just could’ve NEVER dreamed (or in my nightmares) think that while I could be a decent proactive activist, that I wouldn’t be in my children’s lives full time.

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Running Around the Internet NAKED/ FIVE

mistakes

Usually when I get in blogging mode, I have to take a step back. I lead a pretty reclusive life and while I am quite a public activist, I do lead a pretty solitary existence, in my offline life.

I’ve been stuck a lot about where I still was just a mere FIVE years ago. I still lived in a group home for those have severe and persistent mental health issues and cannot live independently. I had just been awarded my social security/disability and I was awaiting my backpay. And time was moving ever so slowly while waiting for that, so I could move out. Ideally, with the hopes I’d get my children back, once I got acclimated back into society.

While my next blog will be about what my life was like when I still had my children, how I lived life with my children. What my “old” life used to be like, when I was a lot more functional as human being but as especially as a MOTHER.

I think where people whether they know me well or not, I throw them off in things. I do complain a lot. Severe chronic pain and mental illness like I’ve said, does feel like a sentence to some of us who have it. I’m not a thriving activist, I just choose to do the activism I do and it takes up a lot of my time and gives me purpose. I don’t have though the sense of humor that a lot of my fellow mental health activists do, about mental health issues. I’m not saying that there is anything wrong about how they go about their activism. I am just a lot more limited in my life by my disabilities. I’m not flying around giving talks about mental health issues. I don’t make any money off my blog. And I’d almost prefer to keep it that way, because then I’m not limited in what I say and how I say it. But I still think in a lot of intelligent thought. I have a pretty good sense of humor and have an amazing amount of empathy. Probably because I’ve ALWAYS been judged harshly in my life.

For as public as I’ve been about things that most people would probably choose to keep to themselves, I obviously can’t share EVERYTHING that’s every happened to me. While there’s NO buried bodies, literally or metaphorically speaking, I don’t owe the universe at large, every single painful aspect of my life.

Because of the limitations of my disabilities, while I can get around still fairly easily via public transportation and I can still walk, it still takes THREE social workers to keep me living independently. I have a disability waiver that helps with me having services in my home ( nursing, personal care, home health aide, etc ,which I don’t use at the present time) help with running errands and/or going grocery shopping (which I do use), transportation to medical appointments (which if you’ve read my most recent blogs, I don’t go to doctors very much).

When I am at home, I am either on the internet. Or I am Netflix binging. While I’ve talked about the irony of my love for the show “Orange is the New Black” and some of it being too relatable. Right now I am still in the throes of a pretty bad “Grey’s Anatomy” addiction and I’ve just started season 3.

What throws people about me, in addition to my honesty, whether it’s online or offline, is the fact that despite the detours my life has taken in the last 8 years, I am still quite “normal” (even though I know there’s NO such thing). While I am not doing things that people my age usually are, whether its being able to drive a car to a job or taking care of their kids, while how my life has played out so far as a WHOLE, is NOT relatable, there is a lot of aspects to my life that ACTUALLY are. And that I am pretty grounded to both reality, current events and pop culture. Even though while I could go out in public while in the system, it was both an altered and different reality. And a VERY sheltered one.

I think where for those of who love shows like OITNB or Grey’s is that it shows human strength and human frailty, whether someone’s in prison OR they are a surgeon. It’s just wrapped with good story lines and super attractive people or interesting looking people that which makes these shows a good form of escapism.

In one of the episodes in season 2, of Grey’s, that I was watching yesterday, one of the characters was talking about not being popular and being teased. She mentioned the dream/nightmare that almost every teenager and/or adult  has about  “going out in public naked”. Which I probably have that nightmare, I don’t remember it. I’ve always felt so overexposed and vulnerable due to the horrible bullying from other kids that I suffered, from the time that I was so young. To present time and the serious topics I discuss in my blog.

The difference of course, as a child, I didn’t know how to defend myself and I had NO ONE to defend me. In my early 20’s in when I developed an ability to defend myself and I also had a child, then children to protect.

I STILL get a lot of anonymous hate from my blog and what I say on Facebook. They usually use my primary email address to tell me that I’m a failure as an activist. That I’m the poster child of bariatric surgical failure. That I’m an absolute HORRIBLE mother who should’ve NEVER had children. And have I ever heard of Photoshop, Spell Check and how did I actually make it past the first grade, as it applies to my writing? And holy moly, I complain a lot… I get it. And people can feel free and keep sending stuff. I don’t think there isn’t anything hateful that I haven’t heard about myself in the last 45 years.

I do though have some AMAZING social media buds. Who tell me they I appreciate my support. That while I complain a lot, I never take for granted the most basic things. My wisdom. My sense of humor. I have people who I’ve reached out to or reached out to me while they were  in crisis and have helped them. LOTS of people. I’ve also had people I’ve never met on social media, send me presents or gifts.  So even though I feel “naked” on social media and with this blog, I am not going to change my basic nature or intentions of how I live my life on social media and how I conduct it at this point. I’m just like anyone else trying to get by in their life and I am just trying to do the  best I can.

I started though hysterically crying, earlier today after my season 2 binge of Grey’s Anatomy and going into season 3. As the mid season was action packed and full of drama. Burke’s shot, Denny dies, Meredith and “McDreamy” STILL can’t make up their minds of what to do with each other. Wow, I can watch whatever I want to… I am not sharing a television with 3 dozen other mentally unstable people…. …. I can take meds when I need to… I can eat what I want to, when I want to (which was not the case, when I was in the system)…. And I heard The Fray’s song for the first time ” How to Save a Life” (which I am now listening to as I write this)….

But the real reason why I’m hysterically crying. I do know how to save a life. I have saved lives. And I could even physically while not current in my certification, I still remember infant, child and adult CPR. I know how to help people to protect themselves and/or understand why people take their own lives.

But I can NO longer “raise a life”. And I can’t make my peace with it. And the way my current cognitive damage is going, I am never going to BE able to explain this to my daughter when she’s old enough to ask questions. And that’s why for how “naked” I feel when writing my more serious blogs, while I will continue to do so, while I can still help people. The irony is just not lost on me, that my life feels like a 10 piece jigsaw puzzle that while all the pieces are there, I can’t put them back together anymore.

“MD-PTSD”/Part 2

Ok… a couple of days ago, I wrote a blog regarding an unpleasant ER visit at a hopsital close to me, Hennepin County Medical Center on Friday.

Unfortunately for both them and me, I ended up with a bilateral bright red burning rash on both my arms, yesterday. I also had a really bad cough that I had for several weeks and should’ve been obvious to the doctors (I own the cough though,I am a smoker with asthma, and save your judgments, PLEASE) that my cough was an issue but I didn’t make it an issue on Friday because I was UNBEARABLE abdominal pain. I lived with unbearable abdominal pain for almost 7 years ,though, before my gastric bypass was reversed.

I’ve been a Size Acceptance and Fat Acceptance advocate for many reasons, just like I choose to remain in the Weight Loss Surgery community for the same amount of time. One of the many reasons I do activism and advocacy for Fat Acceptance because I’ve been stigmatized by doctors or not treated right. Just because I’m fat. It gets worse if you add that I do have severe chronic pain and mental illness. I’ve NEVER had any co-morbidities due to “obesity”. Almost every health issue I have medically and some mentally is everything I’ve done in my life to get thin and stay there.

There’s a look that I get when people find out, especially if they have an “M.D.” after their name, when they find out I’m a gastric bypass reversal patient but that I’m  fat. I’ve already gone into details of why I gained so much weight before my reversal because of psych meds.

When I try to explain to my friends online and off of the look I get from doctors when they find out I’m a fat reversed gastric bypass patient, I tell them to imagine if they saw a unicorn on crack. Because that’s the look I get from most people not just doctors. It’s the “how does someone have so many FUCKING gastric bypass problems that they get reversed but still are so FUCKING fat again????” (note: if you are curious of where I’ve been pic of me in different periods of time both before and after gastric bypass and reversal is on my all time favorite blog of mine, “Ugly Hurts” . However I look like crap when I’m either walking around Minneapolis or in an acute care facility)

So again, to go back to last night. I end up at the Urgent Care at HCMC, because my cough is causing me problems and I want to rule out issues with my rash (which I realize today when it’s gone, it must have been one of the side effects from Macrobid and I had quite a few) and to rule out pneumonia. I live in the Downtown Minneapolis and we are getting snow, and I didn’t want my cough to get worse and then for me to have to out in the snow, was my reasoning for going to the Urgent Care, last night.

So I get there around 5:40 p.m. last night and am pleasantly surprised that they aren’t busy. I get roomed right away and the nurse is starting to give me trouble because I’m complaining about a lot of stuff, some of it which is my normal. She makes a biting comment that if I mention too many more symptoms, I’m going to have to to their E.R. So I back down. She goes out and this really super nice physician’s assistant comes in.

Other than my adored primary care physician of 16 years, I don’t think I’ve been talked to or treated by any other medical professional with such kindness and compassion without it being inappropriate, in my life.

The problem is that with my cough that brought an occasional left side chest pain, she doesn’t comfortable treating me at all and wants me to go to the E.R. to rule out a possible or potential heart attack. Once she said that, I couldn’t pay much attention to anything else she said. She says that I won’t have to go through the waiting room and that a nurse will be back shortly to take me to a room in the E.R.

By the time the nurse comes back (it was the same one who assessed me), I took one look at the wheelchair and thought there’s NO WAY IN HELL, I am going to back to that E.R.  I try to tell her that politely and she was really rude. I just said that I just left that E.R. less than 72 hours ago in terrible pain. While they did something they didn’t do in my book, enough. And she got defensive about that, I walked out and I could hear as I was walking out, say to that physicians assistant, snidely “she’s leaving”.

Who in their FUCKING right mind would stay? Seriously? Keep in mind, I used to get sent home from Fairview University Medical Center with ulcer perfs and projectile vomiting blood and they wouldn’t even do a test on me. This was long before I ever took any ibuprofen. I’ve drug abuse tested a trillion times. For many years now.

I guess I at first chalked up my experiences at Hennepin County Medical Center in that 72 hour period as not stellar but could’ve been worse. Like Fairview University Medical Center worse, although I’ll give my bariatric surgeon credit. He did go way out of his way at times and he’s an amazing surgeon.

Then I realized something this morning. They do treat pneumonia in their urgent care. As nice as that physician’s assistant was yesterday,I left that hospital almost in worse shape last night because I didn’t receive ANY care last night and I have to wonder if her resistance to treat me was due to weight bias. Meaning if I would’ve been thin would’ve I been treated the same way?

I understand that acute care facilities don’t get into lifestyles. They don’t have the time, especially at a Level 1 trauma center.  At both though my urgent care visit and my E.R. visit they knew I was having trouble eating and had both new onset of symptoms as well as certain things were my normal that are not everyone else’s.

The “MD-PTSD” what I mean when I refer to that, is the fact that I have a lot of horrible anxiety about seeing doctors now. And it’s justified. I’ve been unfairly labeled as an attention and drug seeking hypochondriac with a weight loss surgery failure for so long now, that it’s just going to be almost impossible for me to see any other doctor than my PCP and I find that really sad for me. As well as many of my friends, who experience weight, chronic pain and mental health bias.

Not every patient who’s seeing a doctor is looking for drugs or attention. I understand my circumstances are different because I can be in unbearable pain and get myself to an acute facility, especially one that I only live 2 blocks away. But given the diversity of our neighborhood out here, in Downtown East Minneapolis, I don’t know what it’s going to take for me to see another doctor again.

Just like I don’t know what it’s going to take for all doctors not to label patients. Not every patient who walks in the E.R. and is fat is a walking time bomb. That prejudice fails both thin and fat patience because thin patients have heart attacks, too. Not every patient who lives a more singular existence with mental health and severe chronic pain issues is looking for attention or drugs,just like not every weight loss surgery patient develops a “transfer addiction” after weight loss surgery.

But until doctors who do carry bias that end up harming their patients more than helping them, realize that HARM they are causing to patients, I’m going to be an activist and advocate for people who don’t have a voice.

It’s just terribly sad that as we become more technically evolved, we are getting worse in our judgments of people. Especially at the time when they need compassion the most. When they are medical or mentally sick and/or in crisis. And compassion won’t matter if bias effects a providers ability to provide adequate care.

Note: Again I own my barriers. It bears repeating that I’m not a dream patient. I’m just not a provider’s worst nightmare other than I’m kind of a medical anomaly of sorts. Things like pregnancy, gastric bypass and Mirena, while most women don’t have problems, all 3 three nearly killed me (and no disrespect meant to my children, as they were so worth it) And I really respect with the diversity of people that providers at HCMC have to treat, with some patients who are hostile, if not violent, the threat they are up against everyday. And that can happen to any hospital but it’s more likely to happen at a county hospital.

Robin Williams’s death/ Almost 3 months later……

********Trigger Warning: I talk about suicide, severe depression and chemical dependency in this blog.Which can be a trigger for some, so if it does, please don’t read this, as I go in great detail in some matters. With great honesty and empathy but I’m NOT a clinically trained medical OR mental health professional. NOTHING I say or ANYONE says should replace in person, professional clinical evaluation and treatment. If in acute medical or mental health crisis, PLEASE call 911, immediately or go to your local Emergency Room, immediately…….*****

I did something unusual for me before writing this blog. I actually checked what’s “trending” after the coroner’s report came out, that yes, Robin Williams’s death was a suicide and NO, there was NO drugs or alcohol involved.And what people’s reactions were to it, on social media.

I’m not surprised in the slightest, that he wasn’t under the influence. He subtly made it clear that this while something he struggled with, was a very conscious choice, he was making, to end his life.

Now I discussed a couple of days ago, the need for compassion, with almost every death including suicide. The only type of suicide or death I can’t handle, at least appropriately,  is the deaths of people who kill someone else (or a lot of people) and then kills themselves.

But people are still drawing an unkind and UNFAIR differentiation between Brittany Maynard’s death and Robin Williams’s death and they shouldn’t be. While they had different diseases both had the same outcome. As their diseases progressed it caused them more pain. And both had diagnoses that can and will be terminal for some people.

BEFORE I get a bunch of HATE, let me explain something. People do NOT choose to have mental illness issues anymore than they choose cancer. We as a society, UNTIL we accept that, only can we be the compassionately supportive for those who suffer Mental Illnesses and/or lose someone they LOVE. Or the loved ones who have family members with severe persistent mental illness.

If you wouldn’t tell someone who lost a loved one to cancer, that it is too bad that they didn’t fight harder, why couldn’t they snap out of it and be happy for everything they had, WE HAVE TO STOP SENDING MESSAGES TO SURVIVORS AND SUFFERERS, that the person they lost, that their death was in the realm of anyone’s control. Some of these are NOT preventable deaths.

I’m all about Suicide Prevention, which is a part of why I do the Mental Health activism that I do. But anyone dealing with either their own mental illness, loved one’s mental illness or work in a clinical capacity ALREADY knows that NOT everyone can win their battle with depression. That doesn’t mean we aren’t gonna fight for anyone who’s drowning in depression and is acutely suicidal, we just know that while some lives can be saved, some cannot be saved.

I’ve discussed ad nauseaum about suicidality, other mental health issues and chemical dependency. If you read my last blog which was REALLY wordy and ranty, I discussed an E.R. visit recently, where I’ve been labeled as a drug seeking hypochondriac. Part of that I do get, because I did abuse narcotics for a couple of days prior to my suicide attempt. And I used narcotics as means to try and die. I took almost a month’s worth each of Vicodin, Xanax and Miltown/Equanil.

Let me explain something that might help others have empathy towards those who have CD/MH issues and/or die from them. Those 5 days proceeding my suicide attempt in 2008, when I was abusing meds were FUCKING AWESOME (my kids were already with my parents) . Severe manic depression will never make sense to someone who’s NEVER had it. You could have everything in the world, as far as people (the best family and friends), money and possessions and do so much for others, but one has a feeling of EXTREME worthlessness, despondency and isolation. Those of us who have it, feel grief stricken (sometimes for NO reason, but it’s worse in those who have reason, i.e. loss of loved one, relationships end, etc) for NO viable reason. While I’ve never experienced a sense of euphoria, in my life, those meds allowed me to feel comfortably numb about all my physical and emotional pain.And I was grateful for the respite from my agonizing emotional pain.The agonizing physical pain and loss in ability was hard enough.

I’m not saying that I advocate for abuse of prescription and street drugs and alcohol. I AM saying I understand why people use them, if not abuse them and get addicted. I’m really lucky that I haven’t gotten addicted. But certain circumstances did help me. I got violently ill off of IV morphine when I first had my gastric bypass. I’ve also experienced both opiate and benzo withdrawal when being PERFECTLY compliant, about 3 years post suicide attempt, in  2 different occasions . It WAS awful and at the time, I made a conscious effort not to have either a physical dependence or psychological one (which I do have a slight emotional dependence to my meds) but I don’t take them everyday, even with daily severe chronic pain. Going through withdrawal even though I wasn’t abusing, probably helped me realize or just reinforced something that I’ve always known.

I DO have an addictive personality. I’ve been using food as a coping mechanism (and for many other reasons as stated in other blogs) since I was a toddler. I started smoking when I was 15. I was raised in anti-prescription family doesn’t have a history of alcoholism and/or drug abuse. That there is only so many vices one can rationalize and that’s probably the reason why I am rare person with persistent mental health issues that doesn’t have a CD component. It also helps if I drink too much, I get violently ill (projectile vomiting ) and I do get unpleasant side effects from a lot of prescription medications. So I’m not trying to say I’m a better person then someone who’s struggled with Chemical Dependency issues, just saying, how I’ve managed to escape having substance abuse issues.

But to get back to the point I’m trying to make. It’s that we shouldn’t be questioning on who we have compassion for when people battle diseases and when they lose their lives from them. And we need more therapies available both in medical and mental health realms. Most of the treatments out there to fight serious disease and symptoms have side effects that are bad as the diseases and symptoms they are having.

Don’t be surprised if you utter words verbally or on social media that’s the equivalent of “Being Happy is a conscious choice” or some other ridiculous crap, like that or you talk about a suicide to the equivalent of “what a waste”, why people who suffer from Mental Illness will NOT confide in you. You are NOT safe person to come out to, no matter how nice you are in EVERY other aspect of your life. In NO WAY shape or form am I saying if someone dies from mental illness that it’s one’s fault for them dying. If one wouldn’t rationally blame themselves of a loved one dying from cancer, you CANNOT blame the person who dies from suicidality. Or their loved ones.

The point I’m trying to make is you blame NO ONE and have COMPASSION for EVERYONE …….

Addenum: I want to add the following….Celebrities or “privileged” people are NOT immune to mental illness/cd issues.       They are people not superheroes. I had a special place in my heart for Robin Williams. So I get people’s sadness. Out of the top 2 people I would’ve loved to meet, he was only #2, because I’d love to meet Oprah to both thank her and yell at her for how messed up women are about their bodies, given how she and stupid Dr Oz and Dr. Phil have profited on other people’s pain. Mental Illness issues though is a great equalizer.  It effects anyone regardless of gender, race, religion, socioeconomic and education level. But we owe it to their families to be able to grieve in privacy. And without stigma or judgement.

*Crisis Resources*
http://www.nami.org
http://www.suicidepreventionlifeline.org/http://www.nasponline.org/resources/crisis_safety/
http://www.211.org
http://www.211us.org
http://www.samhsa.gov/
http://www.save.org
http://bornthiswayfoundation.org/helphttp://www.iasp.info/resources/Crisis_Centres

http://www.metanoia.org/suicide/

“MD-PTSD”/The “Hypocratic” Oath….

sorry
I’m using my blog to speak up on what I go through when I have to seek “acute” medical care. Sadly, given how mistreated and labeled, that I’ve been, that “acute” care is the only thing I seek other than bi-annual visits with an amazing primary care physician, who’s been treating me for over 16 years, now, but sadly she’s 50 miles away from me.

I had a 5 hour emergency room visit at Hennepin County Medical Center, yesterday morning , after having issues with severe widespread abdominal pain (which is unusual for me, given my medical hospitalizations for my ulcers, meaning severe ab pain is localized and the same place). It hasn’t helped that my other pain issues are getting worse. So below will be an open letter to the Emergency Room departments that have continually not taken me seriously, and while I see their side (I’m obviously NOT dead yet, but that’s nothing short of a miracle. I’ve been wanting as not only as a Medical/Mental Health activist, but as a patient, who doesn’t have a prayer, usually in an ER and how that’s adversely effected my life. I’ve also had problems with Methodist (which I’ve only been once, over 3 years ago and obviously at the ER where I had my gastric bypass and my gastric bypass reversal. And given what happened post suicide attempt at North Memorial Medical Center (being nearly committed after 1 suicide attempt and being on a psych ward for 35 days), those are the ONLY 4 hospitals that I’ve been to, in the last 20 years. I can’t travel anymore due to my disabilities and I haven’t left the state of Minnesota for almost 10 years.

I’m haunted actually that as an activist that I’ve put this off. I have some great sources of support, but I try not to bother people because those who really help me out, have other responsibilities.So when I’m in a medical crisis, I’m kinda on my own. It makes me super sad to think about those who have barriers though and feel sort of like me, like I don’t matter or that because I have medical and mental health disabilities that I’m screwed when seeking medical attention, other than as I said, I have the BEST Primary Care Physician, on the planet. The problem is that I’m too medically complex to have thrown so much on her. But at least I have her. I think about those who are vulnerable and alone (like I am ) when in medical crisis and they don’t have anybody. And I don’t really either.

So here’s my “open letter”  to Hennepin County Medical Center and Fairview University Medical Center, but I’m sure this happens in EVERY emergency room, nationally, sadly to ANY  patient who has BOTH mental health and medical diagnoses. I will address what I call the “war/whore of prescription drugs” in an upcoming blog. I’ve enough to say about the topic on hand.

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Dear Hennepin County Medical Center and Fairview University Medical Center,

I was in the ER, early Friday morning on November 7th, 2014 around 5:30 a.m. I understand that HCMC IS level 1 trauma center. I live 2 blocks away from it. I hear and can see the ambulances, all the time. I have an idea, as I am medical and mental health activist and blogger of what your patient population consists of, being very diverse in it’s makeup of it’s patients. But most of HCMC’s patients are the indigent. I’m sure that for non-acute care, it’s a little more diverse and not as many indigent patients. But if someone has the means to go to an ER that doesn’t have as much as a safety risk (I mean no disrespect to the Minneapolis police presence that is there, and necessarily so) that I’m sure they will go somewhere other than HCMC.

I always have severe chronic pain. IF I went to an E.R.  every time I was in severe pain, I’d be going to an E.R. every day. I did go to HCMC’s E.R. a couple of months ago, when I had on a late Saturday night, this summer, severe abdominal pain and vomiting, but knew better not to go on a Saturday night, which unless I’m 99.5% sure that I’m actually dying, the risk I put myself to walk 2 blocks away from my apartment building is NOT worth it.

However, yesterday my abdominal pain was UNBEARABLE. I figured my best chance of getting a diagnostic and treatment would be on a weekday and I couldn’t bear it any longer.

So I get seen by an E.R. resident or intern not too long after I get there. He starts proceeding, while politely a conversation that leads me to believe in this instance, with his line of questioning that I’m a PREGNANT drug seeking hypochondriac, prescription and street drug abuser, after I have to hear a bunch of “are you sure” types of responses. It’s hard enough for me to take the Green Line (public transit train that goes from DT Minneapolis to Downtown St. Paul), I haven’t left the state in almost 10 years. No, I haven’t been to Africa lately and I don’t know anyone who has been. So hopefully ruling out Ebola and reinforcing the fact you think I’m a total idiot, was abundantly clear. And given the fact I had my FALLOPIAN TUBES removed, LAST YEAR at your hospital, I don’t know why it was freaking hard to stop the pregnancy line of questioning…

Just breathing was extraordinarily painful. I was also polite. I was pretty direct in asking for diagnostics and drugs and if your E.R. doc would’ve asked me the last time I had an IV shot of any narcotic, I would’ve been able to tell you it was over 3 years ago at FUMC of Dilaudid in 9/2011 (and my PCP had to intervene when I ended up with an impinged nerve as well as abdominal pain, that month and it took me going to 2 different ERs other than the one at FUMC which I went to, and it took her calling and speaking to 3 different doctors in 3 days in 3 different hospitals for something to be done, both tests and medication. I had such a bad experience with another E.R. doctor at FUMC in 2/2013 of treating me like a drug seeking hypochondriac and my doctor calling her and she didn’t do anything other than give me a bag of compazene and Protonix when I was projectile vomiting blood and had atypical migraine after migraine. While I realized 3 weeks later, I was able to correlate my problems with Mirena, I shouldn’t have had to be put through the HELL I was in that 6 hour visit, where the E.R. doc from the start was defensive with me. I did file a grievance Fall of 2013, because I knew I was going to raise money for Fairview Amplatz in honor of Zach Sobiech, which I’m also doing in 2 weeks, again).

I could tell I had already been labled, I asked for at least IV Protonix and Compazene for my nausea and the tests. The only thing I got was an IV shot of Compazene and a bag of fluids, until it was shift change about 90 minutes into my visit.

At least with the 2nd team, brought a diagnostic (CT scan with contrast) . But I did get funny looks from some of the doctors. They acknowledged that if I had a gastric bypass and a gastric bypass reversal  that I had to have had some pretty bad residual complications. However, saying my pain levels couldn’t be too bad when I didn’t react to the hard prodding of my abdominal area, was kind of of unnecessary. I was too tired for theatrics and unless any of those doctors would poke my eye out with a pen, you would’ve just been met with quiet resignation and sadness that was starting to build.

As I got into the later part of my encounter yesterday, I started getting slightly agitated. Which in me, means I started getting up and walking around. Part of that, is that other patients were starting to scare me, as the E.R. got busier and also I knew there was a very good chance, I was going home, in the same amount of pain, that I came in with. And that happened to me so many times in 2010, that was one of the major reasons why my bariatric surgeon chose to reverse me. Because he knew I was getting to the point that I was going to let myself die versus actively seeking medical attention.

I understand that my using a lot of ibuprofen and that I am a smoker,  makes no sense to MOST doctors given my G.I. history. It’s been recent of the last 2 years and the reason why I use ibuprofen in large strengths because it’s sometimes the only thing that works. That causes me to be non compliant with PPIs, to prevent having ulcers. While doctors can say, don’t take the ibuprofen. IF I’m in horrible pain, can’t do anything because of it, my current prescription meds aren’t working, what am I supposed to do, then????

I have pain meds. I have a monthly prescription for a C2. I used to bring all my drugs to FUMC and it ABSOLUTELY did not change the way that I’ve been treated. I’ve had some amazing providers at both HCMC and FUMC. And the thing I have going for me, is that when I’m treated with respect, it’s so unusual to me, that I’m almost obnoxious with expressing gratitude when I’m just acknowledged as a patient who’s in an enormous amount of physical pain and emotional pain. Both to providers and on social media, I acknowledge my gratitude.

However, I’m not using any doctor or emergency room, or am I making myself sick on purpose or even subconsciously. I’ve never had any visitors, for many medical hospitalizations, other than when delivering children for ANY medical hospitalization I’ve ever had, other than the 3 surgeries I’ve had and they were “one time only” visits. If I was purposely making myself sick to get attention by ANYONE, I would’ve learned a long time ago, that it won’t get me any attention and there is no agenda I have for taking ibuprofen other than it works when my pain meds don’t, and when the ibuprofen doesn’t work and I have unbearable pain that could be a symptom of a need for acute care attention, that’s the ONLY time I go to an emergency room.

I hope I get an apology from HCMC. FUMC already wrote me off, when they didn’t take my grievance seriously, which was also fueled by a friend who had an accidental overdose with street drugs and not one person knew or would think she’d have a street drug problem. With Heroin.  Nor did she ever get labeled. Or treated with the blatant disrespect that I’ve had to endure and she was a weight loss surgery complication patient, too. But I’m labeled all over the place because I have mental health history.

I understand, because a lot of my “in real life” friends as well as social media peers are medical and mental health clinical professionals. I understand this was very wordy. But this is the point I’m trying to make. I at least know of my barriers. I also know what’s my normal for my physical health in the realm of pain and what’s not. Because I’ve put on my family, one suicide attempt, I’m not going to kill myself, just because a few busy E.R. doctors, politely at least this time, treated me like a drug seeking hypochondriac.

HOWEVER, your next polite, quiet in an enormous amount of pain, physically and emotionally patient, may end up committing suicide. The uncontrollable physical and emotional pain that some of us have and we aren’t capable of being outraged (which is a good thing) there has to be people who’ve already committed suicide and will do so.People can only take so much stigma and rejection. Especially if they are in an enormous amount of physical pain and are not being taken seriously.  That’s what my intention is with this blog so that this doesn’t keep continuing on to others.

Until, EVERY physician realizes that they have just as much responsibility to not harm patients’s psyches (even if their psyches are ALREADY broken) as well as the rest of our bodies. And if that’s not taught in medical school, well, IT SHOULD…..

Thank you to every clinical provider who actually takes the time to read and digest what I’m saying. And it’s hard for me to be concise, given my disability levels. And an amazing thanks to my PCP who’s always treated me with the utmost respect, even when disagreeing with me.

Respectfully, Alissa “Lisa” Kasen

Note: Given the advocacy I do for people with some major barriers, and I own my barriers. Patients are not necessarily right all the time. I’ve said and done things to providers (angry words not actions, although my behavior is kind of strange, you’re gonna havta read my 1st blog that talks about the HELL I went through post suicide attempt. Maybe it might make it easier to understand it’s definitely hard for me to be inpatient who remains in bed in a hospital, after everything I went through in 2008, even I’ve been deathly ill) that I’ve had to apologize for. And I have….

Does PAIN have a positive PURPOSE????

And if it does, what exactly is it? Other than a signal for illness or disease. I am talking about both severe medical and mental health/emotional pain…And I’m NOT talking about pain, such as in childbirth. And I talk about all of that as well as what’s been in the news lately that ties that together, neatly (at last I’m going to try to believe I did a good job or made some good points)

I have a QOTD/Question/s of the Day, and it’s quite offensive and potentially triggering… I am going to ask that you realize there is a purpose for me asking it and maybe it can lead to an interesting if not possibly empathetic debate…….

I understand I whine a lot about my pain levels and the reason why I do is, that it allows me to acknowledge it and move on. In some cases where it’s this bad for the last 3 days, it makes almost doing the most basic (and I live a pretty basic existence as it is) things like doing basic needs stuff like showering, walking, sitting, sleeping and throwing a frozen dinner (although I usually am food apathetic when I’m in this much pain) in the microwave, a herculean feat….

I don’t put on social media, every time I move around. I did end up getting over 5 miles in in walking, yesterday and I literally was gasping in pain with every step. But I also noticed when I was out and about, of just how many people can’t walk at all and were in wheelchairs and in scooters. I’ve been averaging  walking 15 to 35 miles a week, (despite having severe chronic pain, daily for over almost 2 decades) being literally allergic to the sun and daily migraines for the last 6 months. And my exercising is a big deal, given my medical, mental health and cognitive disabilities. And the bullying I’ve had to put up with.

I’m about to make my point. And I don’t know if it makes the difference for those who’ve had severe chronic pain issues or battle serious diangoses or not. Whether they are medical or mental health or combination of. And a lot of my buds have battled catastrophic illnesses and they never complain about it.
Here’s your QOTD/Question/s of the Day …. Would you rather have severe pain and ability or no pain and VERY little ability? I am not saying anyone who can’t walk, or has limited ability doesn’t have pain. And obviously we really can’t choose this. And for some of us who have this, it does severely limit our ability to have enjoyment in our lives. Or is it a matter of just being grateful for what you can do and do the best you can?  Is it a matter of attitude towards pain and illness and where do you fall in when it comes to interacting with people who have medical and mental health disabilities that you haven’t experienced? Or how does living with severe chronic pain and illnesses, adversely effect your life?

I was kind of thrown by the reactions to Brittany Maynard’s death. Not just the negative reaction from religious groups. But from Brittany herself where she was quick to differentiate the fact that her death wasn’t technically a suicide because she had terminal brain cancer. I was also thrown by my thoughts of right to die and it it hopefully will explain why I do the activism I do, but I have to choose my words VERY carefully.

I’ve likened serious mental illness that results in a person committing suicide as an “emotional cancer”. While I do the best I can for suicide prevention and awareness, while a lot of people can recover beautifully and live full lives with medical and mental health disabilities, some of us CANNOT. I am not saying I’m suicidal by any means. Because I’m not. But if you’ve read my earlier blogs, I wouldn’t be so quick to go public with that, either, given the fact that I did almost 16 months in the system, with a  major loss of freedom because of that one suicide attempt.

Nor do I look at Brittany Maynard’s death as a suicide. I look at it as a compassionate form of ending someone’s pain that was only going to lead to more pain and death, eventually.And I appreciate her being a perfect example why people deserve in tragic circumstances such as terminal cancer, a compassionate end. And I thought the support for her was amazing, for the most part, as well as how she chose to live her life to the end.

But AS a Mental Health activist while I look to reduce suicide, I definitely understand why people try or commit suicide and it’s still being stigmatized.

This is why I am asking and why I’m making the statements I am. I feel horrible when anyone has to suffer from anything. I’m not as smart as I used to be, but I have a lot of empathy, for even for bad experiences I’ve never had. I see that will live in a world that’s HORRIBLY judgmental. I’m glad that Brittany’s story was told the way it is, because it did bring more compassion than judgment for people who have medical terminal illnesses.

The problem is, that it also is unfortunately stigmatizing those of us who do have an enormous amount of physical pain and/or emotional and/or  mental health pain. And it’s not a kind differentiation.

So I guess I’m also asking is what is it going to take to have more of a dialogue for that? More treatments available for medical and mental health issues. While I think it’s lovely that I could Skype with a  complete stranger,  halfway around the world, I can’t understand what lengths I have to go to, to get rid of daily severe headaches and migraines (which is NOT the only medical and or severe pain I experience, I have a lot of medical diagnoses).

And lastly, instead of people like Brittany Maynard getting judged by some others and/or religious groups condemning her, I hate to break it to you, but she already like lots of people, experienced “Hell on Earth”. No one has the right to think she deserves to burn, if you believe in an afterlife. Not that we have any say so in the matter, it just makes me both really sad and angry that people can be so judgmental and lack empathy.

Instead of stigmatizing those of us who battle physical and mental health pain, we should worry about those who have pain and mental health issues, and not only do they take their lives. But they take others. This is happening every day now and while I can understand people’s pain and mental health issues, I can’t understand why, unless someone is clinically insane, why this happens and WHY no one wants to talk about it.  How about we talk about why bullying both online and off is so prevalent and why even with all the initiatives we have now to antibully, people have no problem bullying others for entertainment and recreation.

Note: I will post all comments if they are respectful. Given the activism I do both in the weight loss surgery community AND Size Acceptance and Fat Acceptance, I will not post comments that are judgmental regarding weight to others. I have no problem publishing comments that come from a personal perspective.

Also, please, I understand people do have severe chronic medical/mental health pain and don’t talk about it. I really rather not see the equivalent of “at least you are still alive”.

If you’ve never been in medical or mental health crisis and or live with a life long painful disability, you have NO idea how judgmental that i is. I have nearly died, several times due to medical reasons in the last couple of years. I’m not going to let ignorant and unkind, if not triggering comments, trigger my readers.

For my friends, peers or strangers who believe that any death other than not being compassionate to those who murder or physically and/or emotional batter people, someone is not worthy of acknowledgement and respect. Meaning I don’t have compassion when it comes to those who or try to commit homicide and then commit suicide. But I’m asking NO religious rhetoric when it comes to “right to die”

Well we will just have to agree to disagree. And I ain’t publishing those kinda comments, either.

The DISILLUSIONED Body Diversity activist and advocate…..

I haven’t blogged for awhile. While I have had things to say. I haven’t really had the right words to say them. I figured whether the right words came to me or not, I’d give it a try.

Most of my Facebook buds know that I do not go online on Fridays. I normally don’t, because I need a break from social media. I need a break from the activism that I do that’s so serious and mentally draining at times, for self preservation.

I like to Netflix binge on my “Fridays”. Right now I’ve just started with “Grey’s Anatomy”. A show that I have never seen since it premiered on network television.

It happened to be, that in the middle of the 1st season of Grey’s Anatomy that I was watching yesterday, there was an episode about a young lady who had a mother who was a perfectionist and would harp on her about weight. So as a THIN young 17 year old , she went to Mexico and had a gastric bypass and that’s how she ended up in the Emergency Room at the fictional Seattle Grace Hospital, needing a gastric bypass reversal and a small bowel resection to save her life.

That episode REALLY messed up the enjoyment, I usually get from taking internet free days and putting me back into activism mode. But it also messed me up personally, because in the last 4 years, since my gastric bypass has been reversed, I’ve had to put up with a lot of hate and/or confusion of why my gastric bypass was reversed, given the fact I was heavy again, but I definitely didn’t look like I was starving to death (my labs of essential nutrients and vitamins proved otherwise, even though I didn’t have absorption issues with calories anymore). And those pesky g.i. bleeds were going to kill me. Which they would’ve and I would’ve died in 2010 had I not had my gastric bypass reversal.

But somehow, for someone who’s been fat since they were young, I understood better than anyone would think, that I’m sure that thin people have gone to Mexico, to have weight loss surgery because of fear of being fat. I understand better than anyone why a lot of fat people have weight loss surgery and why for multiple reasons that it’s life changing, in a good way for them. That has NOTHING to do with their physical health. And I can’t blame them.

And while I understand and am committed to being a size acceptance and fat acceptance advocate, it seems like as more time goes by, our society gets even more fat phobic. That we are conditioning people at such a young age to find fat AND fat people, repugnant. It’s not getting any better, as far as acceptance of body diversity issues. It’s getting worse. OR we are pegging women of different body types against each other. It’s not any more acceptable to me to thin bash, than it is to fat bash, and I was thin bashed at my thinnest or my weight loss was denigrated in some manner because I had that “RISKY EASY WAY OUT GASTRIC BYPASS ” (my weight loss surgery peeps will get my sarcasm, even though most of the world won’t, ESPECIALLY if they’ve never been fat).

I, unlike my Fat Acceptance peers, can’t accept the word “fat” as easily as I claim. I am not being a fraud when saying because life long bullying being called fat and ugly, while I DEFINITELY  don’t think everyone who’s fat, is ugly (but I don’t have a great love for the term “BBW”) , I definitely feel that way most of the time. I’ve had WAY too many years of horrible bullying both as a child and an adult, to current times, being bullied for being fat (and ugly) , to ever accept the word as a descriptor and not take it as judgment that I have coming to me.

And if I guess my being honest about how hard it is to be a Fat Acceptance activist who takes personal issue with the word and how it makes me feel and it subjects me to more hate and/or criticism, so be it. I am not trying to take away the acceptance of what other people have for themselves as it applies to Fat Acceptance, and I definitely see a need and I think I can understand better than anyone why there’s a need for that as well as be a good body diversity activist. The best I can be…

BUT… I have to be an HONEST one.

And I’m realizing that for as much as I’ve tried to do good in all areas that I do activism for, that I have a ways to go. In certain things, especially as I’m almost 45, I get things more than I don’t get them.

But, I just don’t get the war we have on our own bodies and psyches and other people’s bodies and psyches.Actually I DO. I think that’s what’s most disheartening.

Sadly, the personal issues I have with my weight and looks, EVEN THOUGH I’VE DONE EVERYTHING TO TRY AND LOSE WEIGHT,AND AM STILL TOO FAT AND NOT ATTRACTIVE ENOUGH have NOTHING to do with my mental health issues.

They have everything to do with a society, that’s getting worse in telling me, that NO matter what I’ll do, it will NEVER be good enough. And that is sad, given everything I’ve gone through, that having 101 problems, that my weight, looks and age, is a problem. For me…..

That has no resolution except for me to ACCEPT it. And EMBRACE  it. Even though I’m constantly told mixed messages not only from myself but EVERYONE else that anything I’ll ever do or look like, will NEVER be ENOUGH.

And what is actually NEEDED, so that myself and SO MANY OTHERS, stop feeling this way????……

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