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

Posts tagged ‘#bloggingwithdisabilities #mentalhealth #disabilityactivism #disabilityawareness #activism’

“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….

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What NOT to say to those of us who are “differently abled”…………..

    May is Mental Health Awareness Month…. I decided to throw in a blog of what I loathe hearing on a regular ( I mean CONSTANTLY, as I  can’t personally be hypersensitive or let things constantly set me off being said in passing, I’d never be able to survive being on social media or in our current society) basis or things I have to hear on a regular basis that is a major pet peeve,  as someone who has a combination of medically, mentally and cognitively disabilities or to people who have loved ones with similar disabilities as mine.

   Because I’m a little more aware of my barriers, I also know that while this will be helpful to a lot of people,we all vary in our perception of things.  Meaning what is helpful to one could be harmful to another, so make sure you are sensitive to the actual circumstances, abilities and skill sets (or lack of them) of the person you are trying to communicate with. Because I’m considered “higher functioning” than most with similar diagnoses, is at very best a mixed blessing. Sometimes ignorance as it applies to myself and my life circumstances, would be actual bliss….. 


#1. ” I AM SO busy,busy, BUSY!!!”…. It happens to be that most of my social media peers, as well as my “in real life” peers and people are actually BUSY. They are highly educated, have jobs, families, are going to school for career purposes, etc. It’s a fact of life we communicate with people to tell them we are up to and feel a connection and in fact a lot of us are busy. In my case though, I’m not “busy” with the same things that my peers and/or friends online and offline are. It doesn’t bother me to hear everything my friends are up to and or what they are busy with. 

   It does however quite OFFEND me, if you use “busy”, as an excuse to avoid communicating with me or seeing me. Because I’m aware that I have less responsibilities due to my current life circumstances, I usually keep things open ended and let others make the first move when it comes to making plans or initiating contact. If you make plans with me constantly and then break them because you are “SO BUSY!!!”, I’m just going to stop paying attention to you. I have a good sense of right and wrong. I am not going to engage in psychological warfare or get revenge. You are just going to not be relevant in my teeny tiny world, any longer. ESPECIALLY,  if you knew me in my “other’  life as a “busy” single mom of 2, who worked full time for many years and managed a household and/or you’ve actually met my children when they lived with me and saw how happy we were at one time and I still managed to make time for you and YOUR issues. Or did nothing when my life and my children’s life was falling apart. I managed to forgive some of you. You could extend me the same courtesy.

    I wouldn’t complain to someone who can’t have children or who’ve buried them, of how painful my circumstances are. I wouldn’t complain to someone who’s in a wheelchair or needs a mobility scooter of how painful walking, is. When people CONSTANTLY use busy and their life circumstances that I can’t do anymore, in a kind of “fling it in my face” way, such as the fact that their car insurance is so high, their kids clothing budget is “CRAZY” (not a good choice of a word to me, btw) and all they seem to do is “live in their freaking car, driving to_______”…..  Those are problems I NO LONGER have and I miss them. I don’t compare life circumstances or think mine are any more relevant, I know better. Some people will not. Again this is about being sensitive to the person who you are trying to relate to. 

#2 I AM NOT CONTAGIOUS….. You aren’t going to lose your abilities, all of a sudden develop Bipolar 2 Disorder, gain an enormous amount of weight, develop aphasia  or constantly be in severe chronic pain, or any of my other health issues, if you communicate with me or spend time with me. Given the fact that my “disabilities” are circumstantial not congenital (well other then I probably was born with some of the seeds of my mental health issues, they just didn’t blow up until my late thirties, which is rare) and I was born to be prone to being eating disordered ( I started as a toddler using food as a coping mechanism) it’s not contagious.

    While my current diagnoses have greatly effected my life, I am more than my diagnoses. I have the ability to say that as a medical and mental health activist. But I’m also not a clinically trained professional. Some people with different skill sets do not have that ability and because of their barriers, as long as they aren’t hurtful emotionally or physically, you cannot use that against them. For self preservation if someone who has mental health issues in your life is abusive or is greatly negatively effecting your quality of life and/or peace of mind and  is not aware of it, get appropriate professional help for yourself or them, IMMEDIATELY. 

#3 MY LIFE IS NOT EASY…. Most of people’s lives are NOT easy. Whether they have life altering circumstances like I did, that made me lose many abilities, that I used to have, but I don’t have any longer. Or they have their own personal life circumstances that they would NEVER tell you. I don’t begrudge the good things that my friends/peers have from hard work or even if they are lucky. Because I realize that not everyone is as open as I am about things. And I wasn’t always this way and I wasn’t raised to be this way. 

    Hearing constantly that “must be rough to have so much free time”. I didn’t gain my free time either by hard work and retiring early. I did NOT just wake up one day and thought, this “parenting thing”  and “working thing” is just way too time and energy consuming and throw my children out and decide not to work any longer. I try to make the best out of my current life circumstances because NOTHING has ever come easy to me and I realize that could apply to people who have disabilities and who do NOT. Most of anything I did accomplish and I could’ve been proud of, happened before Facebook but I’m only 44. 

    The best expression I’ve heard to help articulate mental health issues but could be used for more than that. “People ask me why I always take the hardest path, they assume I see more than one path to take”. Again, I know  most of my disabilities and barriers. But not everyone does. Whether they have diagnoses attached or not. Sadly, this could be said about anyone and anything, hindsight isn’t foresight. Some people can’t see the hurtful things they do or say because of their own barriers. I have major remorse for things I did or didn’t do or said and wish I wouldn’t have said but I can’t take back. Everyone does, to different degrees, though. 

#4 MY BLOG IS MY WORK AND…..  Even though it’s poorly written compared to most bloggers and professional writers and I don’t get paid for it, doesn’t make it any less important to me. And I’ve been told by a lot of people it’s helped others. I used to get in my car, drop my kids off of to daycare and go to a place of employment. It’s not a hobby just because I have so much free time (reread #1 & #3) . If you wouldn’t (and you shouldn’t) tell a friend who’s an artist  that you could drop a can of paint and produce a finer work of art, please don’t minimize what I can do or what is important to me, given my current life circumstances or anyone’s. 

    This is both disability and non disability related. Be sensitive and respectful of people’s limitations and barriers. But keep an open non judgmental mind.  Some will get what, when, who and why things are of importance to you. Some people won’t because they can’t. Some won’t because they don’t care. Choose carefully in what and who you invest time, money and energy in. At the same time, we all are full of surprises. I’ve had medical professionals describe me as someone who could be taught (but only temporarily retain) how to fly a 747 and perform a thoracic surgery, simutaneously. There are other times that if I can get out of bed (which I always do because even sleeping causes me enormous pain)  and within the first 8 hours have a sip of water, it’s a good day. And it’s about as productive as I’m capable of. 

#5 NOT EVERYONE WITH MENTAL HEALTH DIAGNOSES IS VIOLENT 
     I will write another blog about personal and public safety. However I get in my private email on occasion that people actually fear me or make assumptions of what I’m capable of. What I’m capable of and what I actually do or not do is a different story. If anyone pisses me off, I am pretty good at articulating that I think someone is a piece of crap and I’ll tell them that, if provoked. That’s it. I’m not going to wish them well however it’s not my right or desire to inflict any kind of harm on anyone. Especially in my case with being a hoarder at times and having a serious suicide attempt, I very unintentionally hurt my children, by neglect. I can make my peace with the time I did in the mental health system, ONLY , because of that. And this why I do the advocacy and activism I do. 

    I however have been accused of wanting to do things I’d never think about or do. I pretty much have owned in this blog, the more serious aspects of my own mental health issues. I’m NOT hiding anything else. What I’ve admitted is HUGE and HUMILIATING.  I’ve  received anonymous hate e-mail for example, accusing me of being a stalker. I can’t even fucking figure out how to edit my blog. I can’t believe that anyone would think that I’d have the capacity to figure out how to utilize web address identifying technology or even if I could that I’d actually use it. What am I going to do, stalk anyone via public transportation??? That’s their own issues talking. I’ve gotten over being offended. 

   While people who are violent have a form of serious mental illness, not everyone with serious mental health issues is capable of violent crime or irrational acts that pose a physical safety risk. Some pose no risk either physically or psychologically to others, they just have dysfunctional thought processes that impede them from fully being able to live their lives. Some people have awareness that they have their diagnoses, some do not. 

    So this is some of my biggest pet peeves of what people say or think about me. I wouldn’t mind hearing of what some of the biases you face whether you have diagnoses and/or disabilities or not.

                  Because when it comes down to it, we all are “differently abled”………..

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