“If only I had a little bit more time”…./It’s NOT enough….

http://www.childrenscancer.org/zach

Again, I’m on my final day of my 2nd campaign on social media to raise money and awareness for The Zach Sobiech Osteosarcoma Fund, with mixed feelings of relief, anger and gratitude.

I had to really think about whether or not I wanted to be associated with this at all, let alone to the degree that I’ve associated myself with. I’m better suited for the activism I do regarding medical, mental health, anti-bullying, body diversity, homelessness, etc.

It’s not that I had much to lose, I live kind of a small life. I did think though for someone with my barriers, even though I’ve now said ad nauseum in EIGHT different blogs, of why raising money for children’s cancers and Zach Sobiech means so much to me.

Here comes the anger part. I knew when I decided last month to do this again, as a token for a multitude of reasons, to raise money for The Zach Sobiech Osteosarcoma Fund, that people, may not want to hear about it anymore. While my social media buds were great both 6 months ago when I did this, and again, the last half of November of 2014, society at this time of year, really isn’t receptive, at least from ME, hearing about why it’s still important to raise money for research for Osteosarcoma. In honor of Zach Sobiech and ALL children who have fought Osteosarcoma and “really didn’t lose”.

Whether or not they lost their lives from it.

But it still didn’t get the attention that I thought it would. My 2nd campaign. And for that I’m super disappointed.

I had to think real hard of attaching myself so strongly to this. I’m this strange, wordy, Jewish, smoking, disabled activist who lives about 40 miles away from the Sobiech family.  There are other people doing this, locally. Not many people, though. There will be another concert next week at Mall of America, though. Why me, then?

Because his fund isn’t getting the attention, I believe it should. So why not me? I just wish others would join me in trying to raise money and awareness.

All these kids and families who have to battle children’s cancers want is another day. Another birthday. Another holiday season, with life and hope.

To achieve that, takes money and research for causes and for treatment and a possible a cure for all.

So I’m doing one last STRONG push to raise money and awareness for The Zach Sobiech Osteosarcoma Fund. Do something in gratitude that your kids don’t have cancer. Do something in honor for those who you know have had a child who battled cancer. Just do something, ok?

Because ignoring the fact that children have to battle and die from cancer, doesn’t make it any less of a threat. And to support the kids and families who have to battle this, needs more than empathy. It requires a lit bit of money and time from all of us, to help fund the research necessary, to have any chance in curing cancer in all kids. So if you don’t want to donate money to The Zach Sobiech Osteosarcoma Fund, do it with another children’s cancer initiative.

I can live with my almost 45 year old self ,that I tried, but failed at raising the money and awareness for The Zach Sobiech Osteosarcoma Fund. I can’t not do anything though, from now on, as an activist (and a mother of 2 healthy children) that I will going forward, in the future to do this when I can. Again, as I said, from my very first Zach Sobiech blog, he and kids like him at Fairview, changed my life.

That’s why it’s NOT enough to do the activism, I’m better suited for. It’s NEVER going to be ok,  that kids have to battle Osteosarcoma whether they live or die. Please donate or share the many Zach Sobiech links that I’ve shared.

Thank You!!!!  Happy Holidays…………..

My Holiday Season-2009

In my more personal blogs vs. activism, I think I’ve kind of made it clear, I’m kind of way stuck in the past. Specifically, of where I was, EXACTLY 5 years ago.

With my memory issues, I was hoping initially that I’d forget the time I spent in the system. But I’m realizing whether I like it or not, it’s serving a very important purpose as I move slowly forward in my life.

What was I doing Thanksgiving 2009? Not much. I spent midday Thanksgiving of 2009 at a drop in center for the mentally ill (Vail Place in Minneapolis). That evening there was another Thanksgiving dinner at the group home,later that evening .  I had already received finally, in the beginning of November of 2009, my 1st SSDI check. It was quite painful to sign over $900 of the $1,001, that I had received,to pay for my crappy room (and board)  that I shared with 2 other people at the group home I was living with. (note: It cost me $900, however it cost the county an additional $600 or $1500 a month, as prior to getting SSDI, I had been on General Assistance since I left the hospital, post suicide attempt). However time was moving by, oh so slow, as I impatiently awaited my backpay.

So, imagine living on a $101 a month, knowing that sometime,  you were going to receive several thousands of dollars in back pay. It really wasn’t the money I was waiting for, it was my FREEDOM. Because of missing some medication passes, I had been restricted for months, on not being able to leave the group home for an extended period of time (more than 4 hours).

Holiday Season of 2009 was my SECOND holiday season spent in the mental health system, though. The year before though,I had been in a 90 day inpatient intensive behavior treatment group home, that was slightly less scary, than my current residency in a group home that was for people who long term needed assisted care because of severe and persistent mental illness being a barrier,of them being able to live independently.

Thanksgiving came and passed. Then 6 days later, it was my 40th birthday. Which I celebrated by  having a delicious (dripping copious amounts of sarcasm) dinner consisting of having mushroom swiss Angus burger from McDonald’s, that I’d end up puking my guts out (the psych meds while I was being weaned off of most by early December of 2009, caused a wicked binge and purge cycle, even though I was almost 8 years status post gastric bypass, this was 9 months BEFORE what would end up, of my getting reversed, which I had NO IDEA that would be an issue in the future) by myself.

I found it kind of funny that in both group homes they celebrated St. Nick’s Day. While I understand the sentiment, it was kind of funny to see a bunch of people who where their medications and a lot of sugar was an interesting combination. It was less funny in me, given the fact I was in that binge/purge cycle and still dumped from sugar, caused quite an ugly reaction (projectile vomiting).

Christmas of 2009 came and went quietly. That also was spent at the group home and later that night, at a local church with friends from the group home, that offered Christmas Dinner to the indigent . A couple of days later, knocked me for a loop. In a VERY good way. When checking my balance, of my checking account, to see if I had enough money for a pack of cigarettes, I had about almost $10K that I should’ve known was coming, but kind of gave up.  Two days later,  New Year’s Eve of 2009 was spent  at a dentist appointment,checking out a condo in Plymouth for rent, which I saw, wrote a check for and then promptly moved out of that group home, next day on January 1st, 2010.

Now, all of this is in my very 1st (ranty, wordy, not capable of any logical sequence in order of thought)  blog on here, on WordPress. It bears repeating, for multiple reasons, though. Especially THIS holiday season, for ME. For someone who nearly lost their life, multiple times in the last couple of years (only once was due to mental illness, the other near death issues were medical) I know how lucky I am, to still be alive.

This blog was not written to do any type of activism. It probably explains more of why I’m passionate about the activism that I do. It also reinforces why I take nothing and no one for granted. But I NEVER did. Maybe the one thing I did take for granted was my freedom. But I had no mental health or legal history before the age of 38 1/2.

So, what will be I doing this Thanksgiving in 2014? Due to having a bad cold, I will be celebrating it quietly by myself. As I don’t want to make anyone else sick.  While most of the holidays (including my birthday) in 2010, I was by myself as I was still quite sick, after my gastric bypass reversal, the last several years the holidays have been spent with my boyfriend and his family and then stopping by my parents house and seeing my children .

I started a tradition that came from when I first moved out on my own, New Years Day 2010, after almost 16 months in the mental health system. It’s a “gratitude” tradition. Kind of quirky, but I actually thank everything that I have, and everyone I have, often. Not just on the holidays. While I’m sure, I’d look strange if I was thanking my bedding and my television (among many other things), in front of anyone else, I couldn’t care less.

There was a time when I had absolutely NOTHING, in 2008 to the end of 2009. I had to start at ground zero in 2010 and rebuild a life with a lot of medical and mental health barriers. Not only did I lose almost all my material possessions, but what I lost in abilities and in freedom. And I did rebuild a life, one I never imagined, while it’s not of my dreams that I had in 2004, it’s not of my nightmares of what my life was like in 2008 and 2009. SO,I know how lucky I am, to have what I have in my life, not to mention, WHO, I have in my life. My children. My family. My friends. My boyfriend.

And the freedom of choice. I couldn’t be anymore grateful this Thanksgiving of 2014 for that and everything else.

Happy Thanksgiving!!!!!

#BlurredLines

***I ask if you choose to read this blog, that you read the whole thing. And if you are a new reader not familiar with me, that you do not penalize me for my cognitive disabilities that prevent me from writing well, as a disabled blogger and making an inaccurate assumption, that I’m not capable of intelligent thought, as a result.

That says more about YOUR bias, then it says about MY abilities, lack of them and barriers, which I’m fully aware of them.***

*** And NO, this blog is not in reference to the Robin Thicke “ditty” that’s been viewed on You Tube about 350 million times, well not directly***

I, unlike most people on social media have not commented on Ferguson. AT ALL. Not that I haven’t had an opinion, it’s just not a popular one. That’s about to change with this blog, though. I’m finally chiming in, but I’m sure that what I have to say will offend many. Hopefully people will understand that it’s my intention to help, not hurt anyone.

While I have a tendency on my blog to stick to medical, mental health, body diversity and anti-bullying activism, I find on social media and within myself, transitioning into being more into overall human rights. Meaning, I don’t believe in prejudicial words and/or hateful words and action being thrown on anyone due to race, religion, gender, sexual orientation, size, or physical and mental health disability. And as a disabled activist, try to use WORDS for greater good, for people.

In my case, the single person I spend the most time with in my life and offline, is NOT on social media. AT ALL. Doesn’t like Facebook, Twitter or any other forms of social media. It happens to be that would be my boyfriend of 3 years. I don’t talk about him very much on Facebook (which is the preferred social media venue of my choice) too much and I’m not Twitter, a whole heck of a lot.  And this is the first time I’ve mentioned him on my blog, because while  I’m not a famous activist, I’m quite a public one of what I’ve chosen to divulge of my life and leave it to me, to find the most private person on the planet and be in a relationship with them. I’m digressing but I’ll make my point, sooner or later. As this very tidbit has relevance in a point I’m trying to make and one that I have both subtly and not so subtly since I’ve started blogging, and way before as just an activist on social media.

BUT… Because I am disabled and spend most of the time alone, when I actually see my boyfriend, it will take me 90 million words and updates about current events and what I feel about how everything on social media is newsworthy, usually for about 2 seconds. And things that should NOT be not so newsworthy (i.e. Robin Williams’s death and all the personal and media speculation in the last 3 1/2 months since then) that’s a huge invasion of privacy, people can’t shut up about. I can’t shut up about that people are getting “tried on social media” and it’s definitely, a trial by fire, while metaphorically, it probably mentally isn’t much less painful.

This is what I have to say about Ferguson. It could have happened ANYWHERE. That fact most people get. What most people don’t get that it’s not a race issue. It’s a RAGE issue. And this is what’s REALLY pissing me off about the whole matter. (I can’t and won’t comment or even hold an opinion about either Officer Darren Wilson or Michael Brown. Was not there. Anything else would be speculation)

Before anyone even thinks to say back to me, “well you’re not black”. No, I’m not. HOWEVER…I am an unattractive, poor, white, fat, JEWISH, medically and mentally disabled female who lives in an area of Downtown Minneapolis where I’m in the minority, in multiple ways. I have an idea of what it’s like to be profiled and be subjected to constant prejudice. My whole entire life.Just not by the local police. But pretty much by EVERYONE else.

This needs to be said as an activist and I’m choosing my words VERY carefully. I do get that black people are profiled and experience a ton of bigotry and I find it revolting.  There’s NO “but” in that last statement. However the biggest threat to someone’s who’s black, their lives,livelihoods  and their safety is NOT the police, it’s unfortunately another black person. Black lives DO matter. So do white,native american, mentally ill,  gay, Muslim, fat people’s and thin peoeples lives. ALL OUR LIVES MATTER. Let’s not go into whether or not people have a choice in being who they are. And hating on them or subjecting them to so much hate. That’s most of the world’s problem, right now in the digital age. We are failing to see people as human beings. Instead we see stories that we either relate to or we don’t. And then we judge harshly. People are losing the ability to differentiate that people are human beings in the digital age.

Until most of the world understands that people are people, that RAGE, INDIFFERENCE and a lack of EMPATHY, is what’s killing lot’s of people, nowadays and finding ways to reach people who are capable of violent harm, and intervene, evaluate and treat those people, not much is going to change. We STILL  are going to keep getting in our newsfeeds stories about parents killing kids,kids killing their parents, kids still getting shot and killed at schools, people getting shot and killed at their workplaces and shopping malls or in front of or in their homes, getting in a fatal car accident on their way home from work and people running over a pedestrian because they are busy multitasking while operating an automobile and another kid is going to commit suicide from being bullied for being too fat and or will die of anorexia and another child dies from cancer. THIS HAPPENS EVERYDAY!!! Where is everyone’s self righteous indignation for all of that??? Where’s the peaceful protesting for all of that??? Seriously, what the FUCK is wrong with everyone???? Where are the initiatives we so badly need now in our society so this finally stops becoming so commonplace in our daily lives, so most choose to ignore it???

We unfortunately, BADLY  need initiatives in this day and age, that people’s actions and words when hateful have consequence on people’s lives, to prevent this from happening over and over again. Whether it’s impulsive or planned. No loved one or stranger has the right to harm another physically or mentally. Unless it’s in self defense, which some of this is about. But if you’ve never experienced rage from a stranger, and I can’t say that’s what or what DID NOT happen here, you would realize that rage in itself is deadly. No OTHER weapon is needed, but others who are capable of rage, anything other than their bare hands can and will be used as a weapon, ONLY to insure loss of life.

So what is this  reclusive and disabled blogger, is asking of everyone, this Thanksgiving Eve in 2014??? Start seeing people as people. Not playthings or something for you to judge harshly for you to make yourself feel better. Realize all the outrage you show for Ferguson won’t matter on social media, if you are texting and driving pissed off to get your 8 year old a new I6 phone and if it requires shoving and pushing others or just giving them a dirty look, you aren’t the saint you think you are on this “Black Friday”. If you carry bias and hate about one classification of people, but not another, that isn’t your “Get Out Hell” free card. Stuff that is American specific is why third world countries laugh at Americans, justifiably so. We live in the world’s greatest nation, for the most part and we are the most ungrateful hypocritical people on the planet.

So if you want to change the world in a positive way, that’s great. Start with Ferguson, just don’t END there. Positively and peacefully advocate for a more peaceful non hateful world and  life for EVERYONE…..

Because either you believe ALL LIVES MATTER or you don’t…. Period…  (and note, I don’t have empathy for people who are violent)

Day #4 ….. Zach Sobiech,18 months later…..

I knew I’d hit a wall when trying to raise money and awareness for The Zach Sobiech Osteosarcoma Fund. Although I am grateful for friends who have donated and/or shared links.

We live in a society, that has a fairly short memory. People are busy, I get it. It’s the holidays now and children with cancer is kinda depressing… The thing is though, there is so many things about Zach Sobiech and how he lived his life, so wise beyond his years, that’s inspiring. As well as the kids who may have won or lost their battle with cancer the last time I saw them in 2010 at Fairview or since. On and off any hospital campus around the world.

There’s not many things that  I actually get to be proud of, given my life circumstances. I am proud of the blog I wrote EXACTLY 6 months ago, on the 1st anniversary of his death of nailing why this not only was important to do for me, but where Zach’s story could help inspire anyone, to want to do better. And be better. And if part of wanting to do better is finding a cure or less invasive life extending forms of treatment, for kids who have children’s cancer, I don’t know why anyone wouldn’t want to be a part of that.

Here’s the link for my blog that I wrote 6 months ago regarding Zach:

Reflections of a “temporary” Children’s Cancers Activist…

While there’s a “recommended” amount on the website at http://www.childrenscancer.org/zach , you can donate what you afford. What you’d spend for a cup of coffee at Caribou. I donated what I’d spend on a lunch. Or share a link regarding children’s cancers in honor of Zach Sobiech. And his family and friends who shared so much of themselves. Where as I’ve said before, on my blog, social media and I got to say to Laura Sobiech at her book signing, 6 month ago, that while children’s cancers are an example of something that’s one of the most wrong things in this world, Zach Sobiech, his family and friends are an AMAZING example of what’s actually right in this world.

The best way to honor them all and thank them is by honoring Zach’s wish that they find a cure.

Please donate or share Zach Sobiech links, this Thanksgiving season.

Thank You!!!!!

A “KANTEKEROUS” KASEN VS. The KARDASHIANS….

People who read my blog and/or follow me on social media, know that while I am a serious activist, that I can’t be in serious activist mode all the time. And that I have a pretty good sense of humor, if I am not complaining about something.

I do blog about celebrities, on occasion. Whether it’s my contempt for the unscrupulous trio of Dr.Oz, Dr. Phil and Dr. Drew. Who make a lot of money exploiting people, which I find despicable. Sometimes even Ms. Winfrey (cause it’s her FUCKING fault about 2 of the 3 have the careers they do, but I still respect Oprah, A LOT) but I still have enormous amount of respect for Oprah Winfrey …. Okay, but I get asked, why do I even care about the Kardashians/Jenners/Kanye West, anyways? If I don’t like them, why don’t I just fucking  ignore them?

To ignore the Kardashians is FUCKING IMPOSSIBLE. That’s the FUCKING problem. Going off social media, FUCKING isn’t enough. Shutting off my smartphone isn’t FUCKING enough. I have to not watch television. Not even FUCKING Netflix. Because I can be isolated from ALMOST everything and then lo and behold there’s FUCKING “Armenian Barbie” (Kim) RUINING  what would’ve been a GREAT Netflix binge of Drop Dead Diva. As someone who ONLY makes FUCKING less than $12,000 a year, and can’t FUCKING leave my cute but humble 280 square foot studio, that easily, I really FUCKING RESENT, everything that I have to do, to FUCKING avoid them.

How does everything that they DO, become news and noteworthy, anyways? Some people compare them to “American Royalty”. And then people wonder why FUCKING society has gone TOTALLY straight to HELL. While I’ll probably chime in a more serious blog about some of my insights into people NOT being able to discern digital and offline reality.

But make no mistake about it. This IS a FUCKING serious blog.

While I don’t get the actual HATE that they get, where their lives are threatened, they’ve got people though. If you FUCKING love them or loathe them, they are laughing at all of us, all the way to the FUCKING bank.

I’d be FUCKING lying, if I ran into a network studio executive (and it would have to be HBO, cause I’m not FUCKING suitable, AT ALL, for network television and I’m also NOT THAT FUCKING DELUSIONAL) who wanted to offer me a $2 million dollar, 20 episode deal to do a reality show called FUCKING “Breaking Bipolar”, I’d be there. In a FUCKING heartbeat. I’d fucking hate myself, but I’d rather fucking any day, FUCKING hate myself RICH, than FUCKING HATE myself, POOR. So I get it, to a certain extent the escapism, these people provide.

But it’s NOT FUCKING ENOUGH for them. Who FUCKING aspires to “break the internet”, anyways? I’ve got FUCKING news for you. The internet is ALREADY really FUCKING BROKEN!!! But literally? Just because someone has an amazing ass and a great rack? That’s what we are teaching girls and boys, men and women of what’s really FUCKING important. And it’s FUCKING sticking as a lesson for all of us and it’s a REALLY bad FUCKING lesson!!!! It’s like we have FUCKING national narcisstic/voyeuristic thing going on with them and it’s FUCKING frightening. Or at least YOU fucking do.

Where’s Rob, FUCKING anyways? Oh he doesn’t exist and has been FUCKING exiled, because he’s not pretty and/or perfect enough to keep his “Kardashian Kredentialing”. Bruce, I have no idea of what to make of. And Kanye’s music is just FUCKING HORRIBLE. If you don’t believe me, you can watch the FUCKING auditory and visual nightmare that is “Bound 2”. Uh Huh, Honey?!?!? Yeah just don’t come FUCKING whining to me, as you can’t FUCKING unsee this and unhear it, if you choose to check it out. My FUCKING “koncious” is “klear”. Just remember Kanye is rolling in the dough and he’s gotta be one of the most BIGGEST FUCKING misogynist assholes ALIVE. (Updated 2/10/2015) And how about we just ban him from EVER attending the Grammy’s, again??? Yo’ Kanye, Beyonce can speak for herself, OK???

I don’t have a great love for Jay-Z and Queen Bey, but at least they have some, if not quite a bit of talent, to back up their egos that fucking ate the universe. Not to mention discretion. The Kardashian/Jenner/West clan, has NONE of that.

So what’s a person do about something like this, anyways? Don’t actively HATE or LOVE them. There’s is where FUCKING apathy would work wonders, in seeing a lot less of them……

You’re FUCKING welcome!!!!!

The Children’s Cancers Activist Returns….

In honor of showing gratitude for the month of November, and it being Thanksgiving, I had a made a decision last month that the last half of November I’d try raising money again for the The Zach Sobiech Osteosarcoma Fund.

Given the nature of the activism, I normally do with Mental Health, even though I’ve written now, FIVE blogs of why I’ve decided to raise money for Osteoscarcoma in memory of Zach Sobiech.

I still get asked WHY. Both by social media peers and my “in real life” peeps. This is my reply. It’s as easy and as complicated as that, I turn 45, two weeks from tomorrow and I was able to leave after an enormous amount of time spent at Fairview University Medical Center, four years ago and can still live my life. But as I’ve said in past Zach Sobiech related blogs that I saw so many sick kids at FUMC before Amplatz opened. And talked to their parents. That it makes no sense for kids who lose their lives children’s cancers, why they still do, when we can Skype with astronauts on the Moon. But there’s no cure yet.

For whatever reason, when I found out about Zach Sobiech the day he died via People.com’s website,on 5-20-2013, his music and his life changed me for the better. It didn’t cure me, that’s why I will always will be better suited to the activism I normally do. But I’ve never been inspired to try and be a better person from someone I’ve never met, like I’ve been by Zach Sobiech and while I was able to thank his mother, May of 2014 at Mall of America, it will NEVER be ok, that I can’t thank Zach.

If we could’ve raised though a dollar, every time, someone’s watched one of his videos on You Tube, we could’ve raised millions of dollars now towards a cure or less invasive life extending treatments for Osteosarcoma and other childhood cancers.

So I am AGAIN asking my social media peers, actually, ANYONE to donate money to The Zach Sobiech Osteosarcoma Fund, like I did this past May. I will be doing this until the end of November. So expect more blogs and video links. And me asking for you to share links and donate money, if you can.

While I hate asking for money, I HATE children’s cancers even more…. That’s why I donated again and you should too…

Thanks!!!!

Zach Sobiech Osteosarcoma Fund

A Reminder of why I do Size Acceptance……..

Okay…. I just received HATE in the form of fat shaming for the first time on my blog.

I don’t know why I am so shocked, but I kinda am. I mean a troll is a troll is a troll…

But still? REALLY? Okay…..

Let me clarify something, my health is for NO ONE to judge. I’ve made it people’s business because I am an activist of sorts. I do not though have any health issues that are erroneously attributed to fat.

I’m not trying to start a war with my adored weight loss surgery peers for what they do for Obesity awareness. We kind of have enough mutual respect to agree to disagree.

When there’s one medical condition that only people who are considered overweight, obese, morbidly obese or super morbidly obese get that thin people DO NOT, I’d still have trouble buying it.

So I ask of my wls peeps or people with fat bigotry issues, to “check them at the door” in my digital spaces. If seeing a fat person eating a Big Mac (which I’ve NEVER ate) fills you with revulsion, you don’t know that the thin person eating a Big Mac, right next to them, could be the person with diabetes, high blood pressure and high cholesterol. You’re justifying your hate of fat, based upon aesthetics. Not based upon health, which you cannot tell, just by how much space that another human being takes up.

If you are that concerned about weight issues, as it applies to health, then be a human being, with empathy, to have concern for all weight issues. People die every day from Anorexia. Let’s not shame body types or pit them against one another. Thin bashing ain’t ok, in my spaces, either. I’ve had “justfiable” body dysmorphia since I was 4 years old. Enough already!!!!

Most of the time I can ignore the hate. So really taking the time to hate on me on my blog, Facebook, Twitter or my personal email address, isn’t going to result in very much.

If I’m bored though, and/or you REALLY looking for a fight, BRING.IT.ON. I’m kind and empathetic, usually, because it’s a conscious choice I choose to make. Really wanna provoke me and well, you’ll find out the hard way, that isn’t really isn’t the best way to utilize your time or mine. And I don’t take kindly to cowardly and cruel internet trolls, if I can’t ignore them.

Ten………

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.

Running Around the Internet NAKED/ FIVE

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.