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“MD-PTSD”….When doctors do more harm than help…

May is Mental Health Awareness Month, and I hoped that the next blog that I would write, would be in the realm of activism regarding mental health,  not talking about another devastating encounter with a new physician.

I admit that I  not an easy patient to treat. As I’ve said in previous blogs that my disabilities make it hard to express myself in logical sequence of order and in complete thought processes, which can make me difficult to understand.

It’s compounded a bazillion times, between anxiety, due to the fact I do have mental health issues, I have temporarily abused drugs, twice, in my life, that I’m quite forthcoming in this blog about that and the labeling I’ve experienced.

I had seen my long term PCP 2 weeks ago. Because we were at an impasse with my medication management, I had agreed to see a pain management specialist to give insight to the both of us, of what would be the best course of action.

As my physician didn’t feel comfortable increasing my dosages and I metabolize meds or have bad side effects to so many medications.

Or they just don’t work at all.

I was able to get into pain management today. I had anxiety of course, which I explained and it was hard for me to be concise.

While the pain management specialist was forthcoming about that she didn’t necessarily agree with my medication regimen, she didn’t agree or understand that after all the doctor visits I’ve had in my life, in the last 10 years between mental health and my gastric bypass complications, that I at this point didn’t want to see a bunch of doctors again and because of the severity of side effects from so many drugs, I didn’t want to try any new medications.

Nor did I want to be taken off the medications that I was currently on.

It was a long intake appointment with the understanding that while she didn’t agree with my being on opiates, that she’d leave that up to my long term PCP and she said, very clearly, that  she wouldn’t interfere with that.

So I did shoot off my prescribing physician, a few hours after I got home, a message of what transpired in my visit with her, while it was fresh in my mind, as I knew that it wasn’t a stellar visit for either one of us.  I detailed what she agreed with my physician, and of her urging me to be under the care of clinical mental health professionals and follow pain management modalities .

Unfortunately for me, I took her at her word that she said she would NOT interfere with my doctor continuing on my current medication regimen. That she appreciated as a pain management specialist, that I am concerned between having mental health issues, that I don’t want to have addiction issues and I would rather not be medicated at all for pain then risk addiction and becoming either a prescription drug addict or trying street drugs, something I’ve never done.

I try to treat myself, from a patient perspective, because I have an addictive personality and mental illness, of knowing that could be the case and it’s a mixed blessing that opiates don’t work as well as they should, because if they did, my circumstances could be a whole different story, and I’d have full blown addiction issues, which I don’t, but it’s nothing short of a miracle that I don’t.

Things that I’m completely honest about. Among other humiliating things in my life.

So imagine my surprise, after shooting my long term physician,  a recap of my visit, tonight, then deciding to check out my after visit summary from my appointment this afternoon, that not only did she think I was somewhat a mentally unstable non compliant  hypochondriac but that she was recommending I get taken off my medications.

Which is a complete contradiction and LIE, from with her at the end of my appointment clearly telling me that she would not interfere with my medication management being done by my long term provider.

Unfortunately for me, it’s my word against hers, a physician.

I’ve had doctors tell me, straight out,that they think I’m a drug addict. I’ve had ER docs when I’d be in the ER for my gastric bypass complications, at Fairview University Medical Center,  even bringing my meds and being compliant with controlled substances, having a ton of them, in their bottles, of them thinking I was drug seeking, when I wasn’t looking for drugs, but diagnostics such as with the pesky intractable projecile vomiting blood due to my ulcers both prior to gastric bypass reversal and after it.

Just based upon the fact I was a bariatric patient with my one and only suicide attempt, trying to use controlled substances to intentionally overdose, that’s explained on my 1st blog on here, in greater detail .

As well as being honest about an inability to be compliant on non controlled substances like ibuprofen (which I didn’t take much of prior to my gastric bypass reversal or of meds like Imitrex, PPIs, and meds in other therapy classes, other than controlled subtances, because I metabolize medications so bizarrely).

Which I’ve been quite forthcoming with providers as well on this blog. There are shades of grey, with patients’s prescription drug use. I’m obviously not compliant with most meds, it’s impossible to be, because my tolerance to so many meds, in so many therapy classes, not just with narcotics, is so high. But I by no means habitually abuse controlled substances, something that she said herself and somewhat congratulated me for, towards the end of my appointment.

Both unfortunately for me and HER, the pain management specialist I saw today,  I did do a Google search before my appointment, to get an idea of her medication philosophies (usually pro Butrans, something she thought I should consider, but apprently not, given her recommendation to my long term provider).

I also found that she nearly had her OWN license suspended due to drugs. Almost 2 years ago and the conditions of her “stay of suspension”, so that she could keep practicing medicine. Her conditions of being able to retain her license, which she is now under, is the fact she can’t be in possession or write a script for controlled substances for 5 years, in addition to other requirements for her to retain her  license and/or be eligible to apply for losing those conditions.

I don’t take any satisfaction in that. Both as a patient and as an advocate who’s trying to de-stigmatize and create dialogue about drug addiction amongst both providers and patients.

As well as in doing all the research I had to do past blogs, as a medical activist, as well as make an informed decision about my medication management I’ve thought about discussing physicians who struggle with drug addiction and trying to de-stigmatize that, too.

Because I fully am aware and sensitive to the fact, that physicians are patients, too.

It’s absolutely  NOT  okay, what I was put through today by her. It’s now going into a weekend.  I can’t talk about this to my own provider, until early next week. I did write a scathing message to the pain management specialist about her lie, and I am now  going to  be filing a grievance against her with the hospital system. And also against the hospital system, themselves.

Which I’ve talked about “md-ptsd” and I have filed one grievance before, with that hospital, which is in another blog.

I’m just beyond stunned, of  the hypocrisy that the hospital has, as well as that provider. They have a a more stringent standard of expectations on their patients, that they don’t even have for their OWN physicians. As it’s a travesty that my suicide attempt and being mentally ill, that history is held against me, apparently for the rest of my life by any provider, but her own isn’t?

How is that ethically fair? To not only as me, as a patient but any other patient who is seeing this physician, have any chance to be treated ethically and honestly, as she has bias, in addition to her own mental health issues and addiction issues  that create an inability for her to be effective of in providing fair  care to her patients.

Especially, especially, ESPECIALLY given the specialty she’s treating patients….

Lisa definition of “md-ptsd” (a “Lisaism” you won’t find in DSM V) – extreme psychological and physical distress of seeing clinically trained medical and mental health physicians, due to my being labeled as drug seeking hypochondriac, post epic mental health breakdown and suicide attempt in 2008. But I have also mentioned that I was drug tested prior to being put on opiates, during ER visits, since I had my gastric bypass.

So now, it’s made my “md-ptsd” expotentially  worse. I don’t love when doctors treat me like crap. That’s why I rarely seek medical attention, any longer. What I usually did in the past with unpleasant encounters when I’m being treated clearly with bias, due to having mental health issues, is I leave. I’ve left ER visits, including ones that I needed further attention. I’ve left appointments in the middle of a visit. I can be mean and not mince words, when doctors treat me like an unstable drug seeking hypochondriac, but I only use words and leave, if I’m going to be reactive (which most of the time, I’m NOT) . That’s it.

You want an example of that? Certainly. I’ll say to a doctor when they come off condescencingly and judgemental that I’m a mentally unstable and drug seeking hypochondriac with maybe other bias towards me (such as weight and being a cigarette smoker) that I’ll say “Wow, I didn’t know Walmart had a school of medicine!!!”.

I’m appalled and devastated, though that a pain management specialist with her own drug problems would do that to a patient who admitted everything I’ve said in this and in past blogs, would lack empathy and lie to me.

I’m devastated that I can’t trust most  doctors not to label me for the rest of my life, given my complicated issues with compliance of non controlled substances due to how bizarrely I metabolize most medication or have severe side effects.

I’m incensed as an activist that other patients might have gone through this and they don’t have a voice. I know almost 9 years ago, when I was acutely suicidal and in so much physical pain and had mentally disintergrated, that  I didn’t have a voice and no support. I write this blog, so that other patients don’t nearly lose their lives from being treated this way or have themselves AND their care compromised due to bias.

I’m hoping that if anyone has gone through this, they will message me privately, if they don’t feel comfortable commenting on my blog.

But I am going to fight back, an ethical fight. By filing a grievance and while I said in my very concise message to her that I hope she loses her license, I hope really she learns from this and at least gets reprimanded.

Although if she doesn’t learn from what she did to me today and has done that to other patients, maybe she should NOT be practicing medicine, any longer.

Because no mentally ill and medically disabled patient who’s been as forthcoming with providers, should have to go through what I keep going through with most physicians.

Actually, it’s been my hope as an activist and blogger, for years,  to encourage honest dialogue between patients and providers, whether mental illness is a factor or NOT, that patients aren’t necessarily penalized with non compliance of ANY medication.

Not only does that increase the risk of patients LYING to their doctors, if they are abusing drugs, it puts them at risk of getting involved with street drugs and the risk of safety and or accidental overdose and addiction to them.

And I didn’t fight so hard to stay alive and try to retain what’s left of my sanity, to let a doctor do something so unconscionable like what was done to me, today (It’s still  5-12-2017 in MN), but I’m going to try that some greater good comes out of it.

For both patients AND providers.

Not just for myself, but for many patients who experience bias and compromised medical and mental health care because of bias that physicians carry due to mental illness and other still stigmatized patient disorders.

Wish me luck…

Note: I have no problem publishing differences of opinions, if stated respectfully. And unfortunately my normal disclaimer of “seeking professional clinical trained professional guidance when in medical or mental health crisis”  doesn’t apply, because I’m not at that point but I’m seriously distressed that my anxiety is in overdrive and my medical care has been compromised by a doctor that knew fully my history and lied to me that way.

Especially given how vulnerable I was due to my medical health issues at that appointment and my mental health issues, as it was difficult for me to get to that appointment with my barriers, as I was exhausted physically and mentally frazzled due to some scary encounters on 2 crappy local buses and walking part of the way in the sun, which I have photophobia.

Again, I own what’s multiply frustrating by me, for ANY provider, including the most non biased clinical professional, of what it’s like to treat me. I’m not a fun patient to treat and I can get defensive. I’m wordy and all over the place. But I tell new providers that those are my barriers, from the start.

And the truth is, most patients are vulnerable, in some way, when seeing a provider, especially given all the factors that played in my visit.

Also,  I don’t believe all doctors are bad. Largely due to my long term physician, where we have a stance to agree to respectfully disagree, given what I’ve been through with mental health and having weight issues even with my needing a gastric bypass reversal.

And I realize other Fairview medical professionals who I know are excellent and ethical physicians, as well as other physicians from different hospital systems both locally and globally.

But regardless of a terrible experience with a doctor, I’m going to ALWAYS recommend that if a patient-provider relationship is not working for a patient, that they try to get help from another provider, whether in acute crisis or not.

Just please forgive me for being kind of a hypocrite about not being too terribly excited about seeing new doctors, in the short term, given my circumstances.

Also note: Unfortunately, I had to do some major editing, 10 hours after I first published  this, because I was so frazzled between being in a lot of physical pain and heightened anxiety, which was was made so much worse, after her saying one thing to me and a few hours later, she completely saying another, as far as her final recommendation would be, made this not as clear as I would’ve liked.

This still isn’t clear, due to the fact I am a disabled blogger who writes about disability and bias. But I feel like I’ve honestly and better presented a fair description of what I go through as patient, but at the same time, being fair with providers who have to treat me.

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9-7-2010 – MY Gastric Bypass Reversal Story….

What I was doing exactly FIVE years ago…..

It’s 5:30 a.m and I’m getting in medicab as I have to be in surgery by 8 a.m. and it’s my kids first day of school, so I’m on my own.

6a.m ish, registering for my surgery and I get brought back to preop and get asked a zillion questions.Unlike my preop questions to me, by medical staff when I had my gastric bypass, which was in December of 2001, I didn’t have any problems with getting all of the bowel prep in, like I did then.

It also probably helped that I spent most of 2010, “NPO” (nothing by mouth), I certainly wasn’t going to screw up my reversal by messing up my bowel prep.

I’m feeling a lot of things, while I’m waiting for my surgeon to answer some ( OK, A LOT) of questions, before I go into surgery.  The problem is, while I got a packet, from the hospital,  it doesn’t say very much. And the month before, when I had an appointment to discuss my reversal, with him, I actually was directly admitted, 2 minutes after he looked at me, cause of the pesky intractable projectile vomiting I had.

The thing I was feeling more than anything, was impatience. I was NOT nervous at all. I had my 1st gastric bypass complication hospitalization, 6 1/2 years earlier. I had my mental health crisis which was done and over and while I didn’t get my wish that things would go back to normal, early in 2010, I was anxious to get this over with.

Not that I had much choice. It was literally do the reversal or DIE.

Smily,  sweet and brilliant surgeon comes in and lets me ask my million questions. Can’t eat for 2 weeks afterwards, similar diet to first year post gastric bypass. Ulcers, it will be debated on whether or not, they will be cut out, when they get in there. I should have an naso-gastric tube for about 3-5 days. Can have clear liquids after it comes out, but NPO while it’s in. Literally in this case, nothing by mouth, as it was my 1st time having an ng tube, and even meds that were only made to take orally, would be crushed up and put in tube, if they didn’t have i.v. equivalent.

Great, lets get this done.

Anesthesiologist comes in, a little bit after that, and gives me a shot, like I had with my rny. What’s different, is that I’m still lucid but can’t talk. I’m now being wheeled into the operating room and I can see it and it’s the one and only time, I not only am nervous, but REALLY nervous, because I always had a fear with surgery that I’d be the one to wake up in the middle of it.

My eyes dart around the operating room, which looks like an oversized sterilized bathroom. There’s a ton of people prepping. One of them is another anesthesiologist who sees my eyes darting around, terrified and gives me another shot.

Fade to black.

I am starting to wake up as they wheel me out of the o.r. into recovery, it’s almost 3 p.m. I notice the pneumo boots on my legs and I start kicking trying to get them off. I’m in and out of it, but at least I know it’s over. Or at least I have a shot at being alive, not having horrible abdominal pain and vomiting and blacking out everyday, like I had for the last 7 years.

I get wheeled up into my room. Surprise!!! I have company. It’s my Mother and Father, who I didn’t expect to see, as it was my kids first day of school. It was Zach’s first day as a senior in high school and it was Zoe’s 1st day of 2nd grade. I know they weren’t home from school, at the time it is, so I don’t know how their first day of school is.

I see my parents who for once, don’t have much to say. I tried to spare them with how sick I got physically, even before I gave them my kids, and they are looking at me, terrified. I am still kind of out of it,  I tell them not to worry, to let Zach and Zoe know that I LOVE them, that I hope they had a great First Day of School and I’ll see them soon.

I thank them for everything and I fall back asleep again.

I wake up around 10 p.m. I’m completely wide awake. I notice my roommate and I say hi. I call for a nurse because I want to go to the bathroom and have a cigarette, after I check in on Facebook.

Nurse comes in. Says that smoking is probably not a good idea. And I don’t need help going to the bathroom as I have a catheter.  I am nice, but insistent,   with all this extra tubing, I make it clear that I’m going to have a cigarette, once I get dressed. Being a frequent flyer in that hospital, for the last 4 years,  I had already packed a t-shirts, sweats and bras and underwear with NO metal  and  usually it would be my cute “Sesame Street” t-shirts, as I’d see kids in previous admissions and it would make them smile. Ironically the orange brownish color in my green Oscar the Grouch shirt, matches my NG tube. Score…

An aide helps me dress and takes me outside for the first time to smoke. I make conversation with her, and learn that I’m hardly alone, being a gastric bypass patient who needed a reversal.

I get back to my room, once we are done. I end up talking to my roommate and I find out that she, like me, had weight loss surgery problems but she had a lap band that needed removal. If she didn’t have cardiac history, it would’ve been an outpatient procedure. And so she is now eating sugar free gelatin and I’m salivating.

I ask her more about her being unbanded. She had her unbanding, earlier in the afternoon. Around Noon. I ask her who her surgeon was and I’m surprised, more like in disbelief, when she says she had the same surgeon for her band that she did for her unbanding (the lap band was not an option when I had my gastric bypass in 2001) and that it was the same surgeon as ME.

I knew I was tenatively to be in the operating room for 5 hours. They were thinking 8am to 2ish. I was my surgeon’s first surgery of the day. I didn’t know and I was blindsided, not in a very good way, when I found out that he scheduled another surgery, in the middle of my reversal. I also was angry.  At him. Not my roommate.

Now I knew in 2001, that a few local surgeons did do more than one weight loss surgery at a time. I NEVER thought my surgeon would do that, certainly not in the middle of an openly performed gastric bypass reversal. While I was fully aware that the Fairview University of Minnesota Hospitals, especially my hospital, was a teaching one, being on campus at the university, I didn’t think they’d double dip when it came to complications.

I also didn’t think the hospital would be STUPID enough to put 2 patients who had the same surgeon, at the same time, in the same room, afterwards.

My roommate and I, both not tired, continue to gab most of the night. I get the hang of how to undo my NG tube so I can smoke without having to bother anyone.

Morning comes. It’s 9-8-2010. I’m very uncomfortable from the NG tube (I had lost the pneumo boots about 11 p.m the night before, when it’s obvious, that I’m not going to throw a clot, due to not being able to get walking in. Most of the nurses already knew me and my penchant for not staying in bed, during my many admissions prior to my reversal).

I decide to go the floor with waiting room on a quest for magazines. I run into my Aunt M  and Uncle S  and 2 of my cousins (my Mom’s older brother, wife and 2 out of 3 of their kids)  when walking by the hospital pharmacy to get to the main waiting room on my magazine hunt. I had knew my Aunt, who had never smoked, just sadly had been diagnosed with lung cancer. I also hadn’t seen any of them, for almost 3 years, even before my kids went to live with my parents. While it was kind of awkward, I was glad I was able to tell her personally how sorry I was and they had NO idea how sick I’d been physically, as my parents are VERY private people. It wasn’t appropriate to talk about my issues, and all the IVs hanging from my IV pole, as well as that pesky NG tube. While I had argued with my parents in the past, as I thought it was unfair for people in my extended family just to think, that I had given up my kids for without some good reason, it’s just not something they would budge on. I talk them for awhile and I get my magazines and go to call my Mom to inform her that I ran into them. She makes a biting comment that I must be feeling A LOT better, as when she called in the middle of the night, to get an update on me,  the nurse had told her I was outside smoking. I’m already not thrilled with my surgeon double dipping, them telling my Mom, that was NOT necessary.

I get a new roommate that 2nd night. It’s a new gastric bypass patient who had been in surgery way longer than they thought. And she was really out of it, only half lucid and while her parents were there, she’d only awake to cry. I end up walking around later, and catch her Mother, crying and she was beside herself. I start talking, well more listening, to my roommate’s Mom, and she feels horrible because she wanted her daughter, to have a gastric bypass to lose weight. But she had one herself, and had some problems. I tried to reassure her, without telling her much about my own story, that I’d look after her daughter as it was getting late, she was distraught. I did tell her that I did have some problems but that NO ONE  else in my family who had a gastric bypass had any problems and that if this was her first surgery, she could very well be reacting to the anesthesia, like I did when I had my gastric bypass, as well as I had problems with the morphine they gave me then. But that we had a brilliant surgeon and that she’d be ok. That I’d keep an eye on her and/or keep her company, so the Mom could go home and try to get some rest, as she was older and it was quite late by then.

Next morning I get moved to my own room, which I had wanted from the beginning. I start breaking out from all the IV Dilaudid and between the NG tube, I’m very uncomfortable. While I knew I didn’t tolerate Dilaudid very well, it did help with pain. I had problems in the past with it. But because I’m on so much more Dilaudid post reversal, then usual, I actually have HUGE hives, all over my face and body.

A physical and occupational therapist comes in, later that morning, to let me know that I’d be working with them, during the duration of my admission to make sure I know how to do things, once I’m discharged, but it was expected that I’d go home, the first several days, with family to observe me, which I knew wasn’t going to be the case. I tell them though that I don’t need therapy, I had a history of being a Certified Personal Trainer who wanted to concentrate on adaptive and rehabilitative personal training. They still take me for my 1st intake and session. When about 5 minutes into that session, it’s obvious that I know how to move, without effecting my core area, where all the major work was done, internally, they agree that I don’t need any PT or OT and tell my surgical team when we walk by them, that.

Days keep going by. It’s finally Friday and I’ve spent the last 3 days since my surgery, NOT in bed. My NG tube comes out, my parents had told me, that my kids could come and visit me, once it came out. My kids also had never seen me in the hospital, due to any of my complications. And because my daughter was so young but knew that I had been sick, I decide that it’s better that they don’t come into the hospital to see me, so my nurses unhook me from my IVs and I take my kids out to lunch at a nearby Perkins, which the smell of food made me extremely nauseous. After we are done, my Dad picks us up from the restaurant, takes me back to the hospital, I assure my children that I’m fine and that I’ll see them soon.

The weekend goes by while inpatient, fairly uneventfully. Other than that I keep blowing IVs all the time, and I’m having horrible migraines, in addition to the hives and itching (that was lessened by the Vistaril they gave me) however the are having a hard time controlling my bounceback migraines from the Dilaudid, I get put on some Fioricet which helps. I’m also allowed later that weekend, to try drinking clear liquids.

Monday (9-13-2010)  comes and I’m told I’m being discharged due to how great I’m doing. Well, not really. But I’m not going to fight it. I want to get home. I’ve blown so many IVs that they have to get labs by doing a finger prick. That’s not the most efficient way to get 10 vials of blood, but I just want to get out of there. I get my discharge stuff, pick up the bottle of liquid Vicodin at the pharmacy and call for a medicab to take me home.

I’m a lot less adventurous at home, when by myself. The liquid Vicodin hurts to take, so I don’t take it. I rest a lot.

Ten days later, I go in for my first post reversal check up. I’m doing great, as far as healing, and my surgeon agrees that while unorthodox for a patient to be walking around so much, during admissions, especially to smoke, ain’t the best idea, that it probably helped me heal, a little faster. Even though there was a lot of work done internally that would take much longer.

I’m still feeling though, quite horrible when I get back home. And when the vomiting and intractable abdominal pain, I’m really miserable. By then it’s October. I end up going to the ER, about 2 days before my son’s 18th birthday. Because I found my son’s father on Facebook, before my reversal (as I, and others, thought I was going to die) he and his father finally connected and he was coming in to see him. I was going to take my daughter, for a couple of  to make it less confusing for her, as I’ll just say, her father isn’t in her life. I however go through another ER visit where the ER staff doesn’t do ONE test on me. And sends me home.

While Fall of 2010, continues to be quite hellish for me, once my daughter goes back to my parents, I make an urgent appointment with surgeon’s NP (nurse practioner, who I’ve known for years, since I made my appointment to have my gastric bypass). She directly admits me on the spot.  They didn’t cut out the ulcers when doing my reversal and I think they finally realize, maybe they should have. My labs aren’t looking that great, either.

Another 4-5 day admission, mid October 2010, and I’m discharged again.

The day before Thanksgiving of 2010. I’m still having problems with intractable abdominal pain and vomiting. I go back to the ER. I get the same ER doctor, who I’d seen that Summer who needed a huge push to take me seriously. While I didn’t think he’d give me the same problems, as I obviously had to be reversed to save my life, he wants to send me home, without doing another test. I call my surgeon’s office and beg them to order something. They do. They ER doctor who went from wanting to discharge me, about 5 minutes after seeing me, about 6 hours later, can’t tell me when I can go home, after I had my upper G.I. So I unhook myself from my IV and I leave.

Day after Thanksgiving of 2010. I get a call from the hospital, saying I need further tests. I get scheduled for an EGD, on 12-1-2010. Day before my birthday.

12-1-2010. I get a call from the hospital, telling me that they need to put off my EGD for one more day. So I’m now scheduled for an EGD on late afternoon of my birthday. Lovely (NOT!!!)

12-2-2010. My 41st birthday no one though I’d live to see. I’m just as miserable as I was before my reversal. I don’t regret it, at that point, but didn’t think it would take so long to heal internally. I get to the hospital, go to their diagnostic department, which I’m completely well acquainted with. My surgeon actually comes in, on time, waiting for me. They can’t get an IV in me. 3 people and 6 attempts later, I am so upset, I just want to go home. So I leave.

I’m walking out of the diagnostic area and my surgeon catches me and asks me where I’m going. We get in a heated debate. He says that I’m not rational due to my mental health issues, but that I should take that as a compliment, as he has other patients who have mental health issues, but that he would never feel comfortable due to the extent of them, of telling them that. I tell him, in not mincing words, it’s not my mental health issues that are the problem. It’s that I’m going on EIGHT years of still blacking out, still having severe abdominal pain and vomiting and it’s been almost THREE months since my reversal. He tells me because my labs are still really bad, that he’ll order a PICC line and then I’ll have my EGD and infusions. And finally admits that while I wasn’t a perfectly compliant gastric bypass patient, that my problems were NOT my fault, even though it wasn’t his, either. Which he has told me, before. Then I go home, again, via medicab.

Next day I’m back at the hospital, to get PICC line.

The day after, I have my EGD scheduled and my infusions of banana bags and ferritin. My surgeon’s assistant tells me that my infusions after that scheduled infusion are going to have to be managed by my Primary Care Physician, who’s 50 miles away. By the time EGD is over, I have a few hours to kill before infusions.

And I start to become VERY angry over the whole thing. My surgeon calling for a pain consult, earlier that summer, the admission he decided to reverse me, late in June of 2010. My being taken off IV pain meds, by the pain management specialist, who said that IV opiates were NOT protocol for Fibromyalgia. I’m angry enough with the pain management doctor to not mince words in saying that  my admitting diagnosis was multiple ulcer perfs, with intractable abdominal pain and vomiting. That lidocaine patches were not proper pain management for managing ulcer perfs, migraines (I have had a migraine history since the age of 15, but the migraines during hospitalizations were caused by the IV opiates but they were needed given the amount of pain that I was in, as I would throw up any oral meds). He doesn’t back down and 4 days out of that admission, going into a weekend, I am not given anything for pain and anxiety. All those ER visits that Summer of 2010 where it would be hit or miss if I’d get any treatment without being labeled as a drug seeking hypochondriac, but didn’t think they’d treat me that way, once post reversal.

I run into my surgeon, after my EGD, but while waiting for infusions. I’m so angry that I threaten to sue. I tell him I want the PICC line out, it’s not worth the risk of having one in, if they aren’t going to maintain the infusion orders. He tells me to have the infusions and that they can take out the PICC line after my infusions. I agree. And I sadly walk away from him.

Spring of 2011. I’m put on Topamax, again, by my PCP for migraines. Not only am I getting every adverse side effect from Topamax, I’m still vomiting and have really bad abdominal pain. I see my surgeon, who does an EGD, agrees that Topamax is NOT the medicine for me, as I have moderate ulcerations.

Late Summer of 2011, one night in particular, I start projectile vomiting and I can’t stop. Dozens of times.  My best friend who’s 1 bedroom apartment in her basement that I was renting, and  who’s also a nurse, calls for an ambulance. While there is a closer hospital, they take me back to the University of MN. I’m given Protonix, IV fluids, in the middle of the night, in the ER. As well as IV pain meds. The next morning, they want to discharge me. With NO testing. I beg them to call the Bariatric surgeon on call, they refuse.

While waiting for my medicab, after being discharged, I see a car come to me. It’s my bariatric surgeon. I take off my sunglasses, and he sees once again, I’ve vomited so much, that I’ve broken blood vessels in my eyes and look like a Gargoyle. He asks me “What the HELL happened to you??” I briefly tell him, as he is a busy surgeon with privileges at many of the local hospitals in the Twin Cities and he was on his way to one. He calls his assistant, tells her to order me an Upper G.I. and wishes me well.

The Friday before Labor Day of 2011. Which is almost exactly a year since my reversal and I’m scheduled for an Upper G.I.. They find a problem with that, but it’s going into a holiday weekend and they are having trouble finding a doctor to do an EGD. I call the medicab company to pick me up, when I’m told that my surgeon will come in, on his day off, no less to do it.

That would be the last time I saw my bariatric surgeon. I got a letter from his office, but not until 3 months  later saying I was of normal anatomy and no longer needed  to be under the care of them.

While I didn’t agree, I knew that our medical relationship was NO longer working. I did appreciate from the start, before I had my gastric bypass, which he went out of his way to make happen, as well as with my complications, that it wouldn’t work. Other than seeing an ob/gyn in November of 2011, to have Mirena put in, that was the last time I was in that hospital system for almost 18 months.

I had NO emergency room visits, in 2012. In fact I only saw a doctor TWICE that year. Once was when I had a syncope episode (because while I’m of “normal” anatomy, I’m still having problems both gastric bypass and reversal side effects, but at least I’m still alive) and fell and sprained my arm. So I went to a local urgent care. Then I saw my PCP. I still was having a lot of problems. but I just didn’t have it in me. But it wasn’t as bad as life was from 2004 to 2011. While my migraines were getting worse, I didn’t know yet, that Mirena would be an issue.

I was really sick though late 2012 and early in 2013. I ended up deciding to go to the ER, the day before Valentine’s Day of 2013, at the hospital where I had my gastric bypass and reversal and many admissions, when the intractable vomiting (sometimes blood) and was having many atypical migraines, that were getting worse.

That admission, I was treated like a volatile unstable drug seeking hypochondriac. Because I was used of being labeled, I had learned for the last 2 1/2 years, not to go to the ER when my PCP wasn’t working, because she had to intervene for me so much and explain to acute doctors, of the danger they were putting me in, not taking me seriously, which she had learned, almost the very hardest way, almost 11 years before when she delivered my daughter, and it nearly killed Zoe and I.

The ER doctor on 2-13-2013, at University of MN Health, didn’t appreciate my calling my PCP. After giving me a cocktail of Protonix (at my PCPs insistence ,as by then I was taking a lot of Ibuprofen, something I didn’t do before my reversal as I already had ulcer bleeds but anything I was trying to get rid of these unbearable migraines wasn’t working) and some IV fluids and Compazene, discharged me without a test and her abysmal treatment of me, was devastating. I couldn’t get a medicab to go home because they were overbooked. By then it was around 8pm, it was dark out, snowing, super cold  and the hospital campus, because they were building the light rail, was unrecognizable to me, even though I’d been there so much in the last 7 years,  not to mention I was kind of disoriented not being able to keep foods or fluids down and meds weren’t working.

I got lost many times when trying to find a bus, to get home. At least by then I lived in Downtown Minneapolis, where I just moved, a month before, which was only 2 miles away. I had already been super depressed, as discussed in a previous blog. I also didn’t know at the time, that Mirena was definitely an issue, that was going to kill me,  until a month later. While I don’t hold that ER doctor, responsible,  for not knowing Mirena was an issue, she could have treated me, better. I have NOT been at University of MN Health, as a patient, since then. Only this year, going there, to visit my best friend’s son during one neurological  appointment, that was in the same office as my bariatric surgeon and when his Nurse Practioner saw me, she didn’t even respond back to my saying “Hi” and my best friend caught that, and looked at me like a very scary ghost.

This was MUCH more than a Gastric Bypass Reversal story.It’s a medical and mental health activism story, as well. It also explains why I do the body diversity activism that I do, as well as why I definitely understand why some  people don’t want a surgical intervention or any weight loss suggestions, thrown on them on an hourly basis, and every time they see a doctor.

I hope it makes sense though, of why I went into so much detail. It made things so much harder on me, to get medical treatment, sometimes in life or death situations, then it had to be, because I had a mental health history, starting in mid 2008. I also when I had my gastric bypass reversal, didn’t know anyone else who had one. And I made a vow, that no one with major complications and a reversal, would ever go through that, unsupported. I did have great weight loss surgery peeps who did try to support me, but I’ve helped an enormous amount of people, by going through so much medical and mental health stuff, by going public with my story.

This was much longer than I could’ve anticipated. I will say that, while I don’t have any regrets about having my reversal, I’m still having a lot of problems, FIVE years later. That I haven’t wanted to address and hopefully, my going into detail of the problems I had, makes sense, why I’m so hypocritical in not proactively seeking medical care, when it comes to my own circumstances, due to the HELL I was put through. I’m not saying I was a perfect patient, because I wasn’t. And I’ve learned in the 5 years, I’ve been talking about my reversal, and helping a lot of people, that my bariatric surgeon made it easier than others, that I know now , who’ve needed a reversal. I also though at this point have hit a wall, and I do have to seek both a bariatric surgeon for side effects of my reversal that greatly interfere with my life.

Even though I’m no longer endanger of dying due to multiple ulcer perfs and my labs have gotten a lot better.

The specifics of how I’m doing, currently, will be in an another  blog, soon.

I apologize though, not only for the length of this, but that I haven’t done a gastric bypass reversal specific blog, on this site, I do have one at Obesity Help, that I started in Summer of 2010.

But today, I am celebrating that I’m ALIVE on my 5th anniversary of my reversal . Something I honestly, didn’t think between my complications, my reversal and my Mirena issues (another blog will be about that, too), that I’d still be alive, today.

Note: This is NOT a anti-wls surgery blog. This is a blog that hopefully explained in great detail, of why I do the activism I do. I am very supportive of choice. Meaning I’ll defend a surgical intervention to lose weight.

But I’ll most definitely defend anyone’s choice NOT to have weight loss surgery and not be subjected to constant fat bigotry not only by society, but medical professionals as well. But this shows that even in my case, where while my weight fluctuates, while I don’t have fat bias issue by doctors as a problem, in their treatment of me, the labeling that I’ve gone through, with mental health issues, has definitely effected not only not getting any care, when seeking it, but the horrible amount of bias that I have endured, not knowing until a few years later, not just because of my mental health issues, but before they were diagnosed, because I’d been labeled and drug abuse tested, way before I was put on narcotics, because of the fact I had weight loss surgery.

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