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

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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