Thursday, May 30, 2013

"You sound like you want to be sick," AKA, the story of how I got crippled by a shitty doctor.

In 2008, I was a healthy- if just a touch overweight- twenty-eight year old when I gave birth to my daughter, Wednesday. Labor was so easy, I actually stayed at home and did laundry until my grandparents and husband pushed me out the door, fearing I would give birth in the car. I arrived at the hospital just four hours before Wednesday came into the world, and I shoved her out with one heroic push. ONE.

With the exception of my slightly premature daughter's inability to nurse, the entire experience was easy. So easy that I was up and walking around my hospital room within thirty minutes of delivery, to the horror of my doctor.

So you can imagine that it came as a huge shock when, a mere eight weeks later, I could no longer walk, stay awake, or otherwise function.




I believe that all my current medical issues can be attributed to a near-miss car accident that occurred about six weeks after my daughter was born. I was driving my grandmother to the grocery store when the car in front of us pulled a sudden U-Turn into the path of an on-coming vehicle. That second vehicle swerved into our lane, and we went off the road. I ended up with a mild case of whiplash. Since then, I've done a lot of reading on the effects of neck injuries on the brain and nervous system, and I'm absolutely convinced that this "whiplash" I left untreated - "It's not that bad!"- is what caused the health issues I'm battling now.

Live and learn.

Two weeks later, I was walking up the stairs from doing laundry, and my knees quit working. I had never felt so tired. It was like someone had just flipped a switch and I felt awful.

The moment just prior to that incident is the last time I remember feeling "normal."

When I went to my OB/GYN for my post-natal checkup, I expressed my concern over this. I told her about how run down I was, how tired and weak I felt, and how I was in pain all the time. I likened the pain I was feeling to the day after very strenuous exercise. She suggested that I was still "bouncing back" from childbirth. She wasn't the doctor who delivered my child, so she didn't know how easy the birth really was. When she checked her colleague's notes in my chart, though, she became concerned, and referred me to a GP who took uninsured clients.

The GP I saw was a really smart, really professional lady I will call Dr. Red. There are a lot of doctors in this story, so I'll just assign them color names. Dr. Red assured me that she was going to get to the bottom of this mystery problem, since it was impacting my life so terribly. She sent me for some blood tests, including a rheumatology panel and thyroid test. When the results came back, I was shocked: it was a mere Vitamin D deficiency! I would just take some supplements and I'd be cured!

Three months later, I was back in Dr. Red's office. I was walking with a cane now, and I could barely keep my eyes open waiting in her office. Since my mobility had been affected, my activity level had dropped drastically, and I had gained a whopping eighty pounds, just over three months. I'm sure you can imagine what she blamed for my condition: "Of course you hurt, you're morbidly obese!" When I pointed out that I was not morbidly obese when I first came to her office for the same condition, she brushed me off and insisted I had a Vitamin D deficiency and I needed to go on a diet. I was probably just eating too much junk. I told her I was taking the supplements, I'd even upped the dose, and nothing seemed to be getting better.

Then I told her about a syndrome I'd read about on the internet, a syndrome I had many, many symptoms of. "Do you think it could be Fibromyalgia?" I asked, and she snapped back, "You sound like you want to be sick."

Let me pause here to explain why some people, when seeking a diagnosis, seem like they "want to be sick." It's because when you feel 100% shitty, 100% of the time, you want to know why. You want to put a name to why you feel the way you do, in part because you can then be proactive about it and work toward feeling better, in part because you secretly suspect you might be making it all up without realizing it. To hear, "You sound like you want to be sick," is devastating to people struggling with an undiagnosed chronic illness. It's dismissive, unsympathetic, and flat out rude. Plus, it doesn't make a lot of sense; if a person was so mentally ill that they truly desired sickness or attention from sickness, that's a serious psychiatric disorder known as M√ľnchausen Syndrome, and these people should be treated as mentally ill, not shamed for their attention seeking.

Side note: M√ľnchausen Syndrome is sometimes referred to as Somatoform Disorder, a psychological illness that some doctors believe is the root cause of Fibromyalgia, aka, "You want to be sick, so you are." If the doctors who truly believed Fibromyalgia patients had Somatoform Disorder treated it as a mental illness and sought treatment for their patients, this wouldn't be a problem. Unfortunately, these patients are dismissed and shamed out of hand for being "crazy," and I've found that medical doctors who don't work in mental health fields have little to no respect for people who are "crazy." It's a character flaw, not an illness.

Anyway, because I didn't know better- and possibly because I was raised Catholic in a "bootstraps!" kind of family- I decided that this doctor was right. I was just making it up. Dr. Red gave me prescriptions for heavy painkillers, lectured me about drug abuse, and I suffered in a narcotic haze for some more long months, feeling guilty all the while, until something... weird happened. You can read about it here, but the gist of it is, I had a softball sized tumor wrapping tentacles around my spine at the base of my neck. If you ever meet me in public, feel free to ask about my scar, I'll totally show it to you.

While waiting for my surgery day to arrive, I had a seizure. This delayed the surgery while I had other tests done. Dr. Red questioned me about everything I had been doing to cause the seizure; she thought it was self induced. I admitted that in addition to the medicines she had put me on, I had begun occasionally supplementing marijuana for pain. The reason, I told her, was that my husband had quit his job to go back to college, and I had reentered the work force. Remember, at the time I thought I was just lazy and crazy and seeking attention, so I assumed I could totally withstand the grueling pace of fast food work. I knew I couldn't work at McDonald's high on Vicodin or Oxy, but I knew from years of experience that I could totally work at McDonald's high on weed. She told me that my seizure was obviously caused by marijuana- a dangerous, evil drug with no medicinal benefits and yet another clue that I was just a drug seeker- but if it would make me feel better, she would send me to a rheumatologist.

I had the surgery to remove the tumor, my back was a little less Quasimodoish, and I went to see the rheumatologist. We'll call him Dr. Green. Dr. Green took great delight in pushing on my "trigger points," extremely painful spots that Fibromyalgia sufferers have all over their bodies. Sometimes, even the brush of your clothing on a trigger spot is enough to launch you into days of agony. My first rheumatology appointment was horrible, but it was also wonderful, because I finally had my diagnosis. Dr. Green was in the room with me for about ten minutes before he said, "You're textbook Fibromyalgia and hyper-mobility. You need to get a new GP." He also told me that there was "no way in hell" that marijuana had caused my seizure. He blamed Tramadol, a painkiller I was prescribed by Dr. Red, and told me to immediately stop taking it. He explained that another medication I was on, Gabapentin, was an anti-epilepsy drug, and that in my chart Dr. Red had noted that her reason for prescribing it was to offset the chance of seizure from the Tramadol (I have a mild case of Restless Leg Syndrome, which Dr. Green told me could slightly increase the risk of seizures from narcotic pain relievers... the more you know). None of this was ever discussed with me; I was told to take these medications "for pain." Frustrated with Dr. Red, Dr. Green gave me the number of a doctor who issued cards for the Michigan Medical Marihuana Program and told me that his Fibromyalgia patients were benefitting from the drug.

I should have saved the name Dr. Green for the weed doctor. Damnit.

No, I kid. I'll use that guy's name, because he helped save my life. His name is Dr. Crocker, and he's amazing. Although, my first visit to his office was less amazing, because I didn't see Dr. Crocker that time. I saw another physician, a woman who told me I was too fat and Fibromyalgia wasn't a real disease, but who reluctantly issued the card, anyway. Whatever, I didn't care. Now when I go to the office, I just make it clear that I need to see Dr. Crocker and not the other one. My cousin D-Rock enrolled in the program as a caregiver, so she could grow plants for me- in my condition at the time, the strenuous work of a grow-op would have been far out of reach for me. D-Rock had a personal stake in this operation; she'd seen family members struggle with and die from addiction to pills like Oxy, Vicodin, and Norco, and she had lobbied long and hard for me to stop taking them.

On the MMMP, my life changed drastically. I no longer used a cane. I started running. I started losing weight! It would have shocked Dr. Red, I'm sure, to find out that it was my pain making me fat, not my fat causing my pain. But she'll never know, because I'll never go to her again. After a long time of not seeing any doctors at all- I didn't need to! What a concept!- I ended up in the emergency room with a crushing headache. Long story short, a very tired resident accidentally broke the news to me that I had a brain tumor.

I did not have a brain tumor. I had a migraine.

I saw a new doctor, because no way in hell was I going back to Dr. Red- it didn't matter, she no longer practices. I do not know the reason why, but obviously, I have my suspicions.

My new doctor, Dr. Blue, looked over my chart, found that I didn't have a brain tumor after all- "He was obviously in the wrong room,"- and told me some really awesome information. Like, the fact that the only blood tests Dr. Red did when she promised me she'd done a full panel were for Vitamin D deficiency and cholesterol. She'd never done a rheumatology panel, despite telling me I'd had one and it had come back normal. And as it turns out, I have epilepsy- a condition that wasn't diagnosed because I was on Gabapentin when I was sent for my EEG. If I had known more about the drug and why it was prescribed, I might have mentioned it to the technician doing the EEG.

I'm pretty mad that lost three years of my life on crazy drugs I didn't need and suffered through being told I was making things up for attention. I really feel that one sentence, "You sound like you want to be sick," is what kept me from being proactive about my health for such a long time. Now, I'm healthier than I've ever been. I lost sixty-five pounds (I'm still fat, but I'm less fat than I was). I run (at my peak, I was running twelve miles a week, but I've backed off now to nurse a tendon injury). I did P90X. I can walk around! It's a miracle!

What I've learned from this experience is: just because someone is wearing a white coat doesn't mean they're smart. And as a patient, you have the right to a doctor who listens to you, and who is honest with you and doesn't lie about what care you're receiving. And never let your doctor prescribe any medication for you if you don't know what it does.

I still have my bad days, both due to depression and to Fibromyalgia. But now that I have a good doctor and a good plan for pain management, rather than someone who shames me for complaining about my pain, my quality of life is a lot better. Do I consider myself disabled? Yes, I do; some days, I am genuinely disabled by my conditions, and occasionally I need assistive devices. I definitely can't drive anymore, because of my seizures. But I suffer from invisible disabilities, so I have the privilege of hiding them, if I want to. I never have to tell anyone I'm sick if I don't want them to know, and I realize that for many people, this is not the case. My life and my health could be a lot worse, so I'm grateful for the good doctors- especially Dr. Crocker, who is still one of my care providers- and loved ones who cared about me enough to see me through those bad times.

88 comments:

  1. I'm sorry this happened to you! I too had a terrible experience with an awful doctor who almost gave me a dangerous surgery that, after I saw another doctor, I found out would have been entirely wrong for my condition. I was so, so angry that I almost let that incompetent asshole cut me up. You really have to find the right doctor--if the one you have isn't taking you seriously, can't or won't answer your questions, etc. find another! A good doctor will be upfront and honest, and while he or she may not always be able to give you the kind of answers you want right way, they'll never make you feel stupid or dismiss real concerns.

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  2. What an awful thing to happen, and with the worse consequences.

    In my experience with doctors, there seem to be many who have a cause they just push like crazy. I had a doctor who was obsessed with high blood pressure. My husband went to see him for a lump, and the doctor barely even looked at it, and went straight to berating him for his high blood pressure.

    When I was pregnant with my daughter, a pregnancy that happened 2 months after a late term miscarriage, I went to see him for a routine check up at about the time I had had the miscarriage in the previous pregnancy. I was super stressed out, thinking something was going to go wrong. And understandably my blood pressure was up. He put me on blood pressure medication that had the side effect of depression. Which he didn't tell me about, despite having a history of depression.

    It almost killed me. I was a different person on those pills. I didn't want anything to do with my husbands family for some reason, and I was literally wishing bad things on them. I was contemplating suicide. I am currently in tears just thinking of that time. When I went to see my OBGYN, he took me off the pills immediately, questioning why I was even on them in the first place. The change in me was almost instant.

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  3. My mom, on day opening a car door, heard a crack in her side and felt pain. She was only just turning 50. She hated doctors and, assuming it was a cracked rib, didn't go to one. After three months of the pain getting worse, she went to a doctor. The same one my dad and his mom go to, except she saw he other doctor who works there. They did blood tests. Three months later, no calls and no results. My whole family had to convince her to find another doctor. The pain was so bad. She did, only to find that the oritinsly doctor wouldn't give up her original blood tests. The new doctor had to fight for them. After scans and test and her scaring herself with webmd, we found out she had multiple myeloma.

    Her own three months of waiting was her own fault. The next months was on the first doctor. By the time she had a diag, she was at stage 3. And that's as high as it goes. We met a lot of shitty doctors over th next year and a half, and some great ones. I hated her oncologist. He was very nice, but he just liked to spew rainbows and unicorns about her condition. It was dishonest, in my opinion. She was always so hopeful after seeing him and so crushed when she wasn't feeling as good as he said, or only going in remission for a week...

    After a year and a half of fighting it, she died. Multiple myeloma is bone/blood cancer. She died withered, deformed and with her spine collapsed. She was in pain all the time with brief moments of relief. She was on pain patches and pills and she hated them all. Nothing, realistically, would've helped except finding a better doctor sooner. Maybe. But I will always hate that first doctor for fighting so hard to make sure she didn't get any results for months.

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    1. I'm so sorry about your mother. My father was suffering from severe back pain, and his doctor kept telling him "you need to lose weight, get more exercise, that will cure the back pain", but like Jenny, the exercise was excruciating and impossible.

      He also has multiple myeloma. The exercise was making the bone degeneration worse. He's improving right now, but he's been in a wheelchair mostly since the beginning of the year.

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    2. OP on this one. I am so sorry about your dad. Please don't let my personal experience get you down. Like I said, she hated doctors and never let herself rest like she should have.

      But, I need to say this. If you live in nj, like we do, robert wood johnson is a great hospital, do not joint any of their trial programs. One of the shittiest doctors ran her trial and she never saw him since he was off campaigning for funding. We were looking into another hospital before she died.

      And... I don't know how bad your dad is. Have you done the stem cell transplant yet? They did two on my mom, one after the other both with her own cells. She was great for awhile, but she was so bad the second one just caused her more pain before dying. Please research donor transplants. I'm not saying it's better, but using her own certainly didn't help.

      At stage three it was so crazy and scary. We didn't know anything about it at all. But, and maybe this might help if he has a good doctor, near the end she started getting soft cell tumors. No idea from what or why or anything. A huge purple lump on her neck, in her abdomin. Radiation was the only thing that helped. Don't wait on those. The abdomin one was so painful and blocked her up so bad she was screaming at night. Her trial doctor said she shouldn't have done it, but he never listened. One of her trialmates that she met started getting them, too.

      Just be careful what he gets signed up for. I don't know what might have made a difference,but I ccan't help but think maybe something could. Can I ask you what stage your dad is?

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    3. Thank you. My dad is in California. He was scheduled to do a transplant about a year and a half ago, but then he got a bout of pneumonia that put him in the ICU for 2 months. I honestly thought he'd never leave it again. Since then he hasn't been at a point where the doctors have felt it was safe to do.

      He's kind of the opposite of your mom - all his blood tests showed a steady deterioration, but he's consistently alert and generally happy. Earlier this year the doctors thought he wouldn't make it to spring, his blood work showed total kidney failure and the cancer was really bad. Then in March he suddenly rebounded and he's been a lot better since. I'm not sure what stage they're calling him now.

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    4. OP again.

      He had kidney failure and rebounded? That's, from what we gathered, like the end of the line in stage three. According to everything we were ever given and told once your kidneys fail, it's like everywhere and nothing else is going to help you.

      That's so amazing. Maybe he's just lucky. We met so many people who've been fighting for years and stayed in great health along the way, I wouldn't be surprised.

      It sounds bad, but my mom panicked about kidney failure. During the abdomin tumors. It was hilarious because her kidneys were fine and we knew it, but watching her on drugs just panicking about not being able to pee lol. Gotta laugh at the small stuff.

      But it's great your dad is doing so well! Hopefully he can get to the point where the wheelchair is only needed on long outings. I really hope for the best with him. It will always be hard, but he gets to have family like you, and that's crazy important and awesome.

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  4. Ugh, I am so glad I have a decent doctor. She fixates on a single solution like crazy (which irritates me), but if I raise the issue, she'll listen to me, which is great.

    This story reminded me of a doctor my best friend had years ago, though. She had gone through some very traumatic experiences, and had attempted (and nearly succeeded) to kill herself with a concoction of various pills and alcohol. She ended up being ok, but a while later, she started coughing up blood, having dizzy spells, all sorts of bad things. She went to the doctor, and they told her that the pills she had taken were effecting her body in a non-reversable way, and that it was going to kill her and there was nothing they could do. She was 16 at the time.
    That year was hell. She'd miss classes, or come in late because she had been at the hospital that morning. She would run out of class so nobody would see her coughing up blood, and I always had to walk behind her was we went up the stairs to catch her if she had a dizzy spell. We were all essentially mourning her death before it happened, because of what she had been told.
    Nine month after her diagnosis, she was in the hospital for further tests, and it just so happened that a different doctor was looking at the results. And that's when he told her that what was happening was treatable, and certainly wasn't fatal. Yeah. It was a wonderful end to the story, but those fucking doctors could have prevented a lot of pain if they had just done their jobs right in the first place.

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  5. "Let me pause here to explain why some people, when seeking a diagnosis, seem like they "want to be sick." It's because when you feel 100% shitty, 100% of the time, you want to know why. You want to put a name to why you feel the way you do, in part because you can then be proactive about it and work toward feeling better, in part because you secretly suspect you might be making it all up without realizing it."

    this, totally. i don't want to write a whole saga, just thank you for articulating something that i feel, but have not been able to explain to others.

    and let's say there's nothing wrong with me, i just developed some bad/lazy habits. uh, can i get some help with breaking those habits, or at least a little understanding that i'm dealing with something real and having difficulties? we can accept that people need help to break bad habits like substance abuse, but there is never sympathy for something that can be painted as laziness.

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  6. I'm sorry this happened to you and I'm glad you're in a much healthier place. This reminds me of the first doctor I went to for anxiety, she put me on Zoloft which made me suicidal and aggravated my Trichotillomania (Half my hair was gone after 3 weeks). When I asked to be taken off it, she told me I wasn't trying hard enough and it was my fault they weren't working. I switched doctors and am much happier now.

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  7. That's so terrible. I'm sorry that happened to you. It's terrible that doctors are allowed to be so dismissive, and I'm surprised more people don't get punished with malpractice suits honestly. I think doctors should get a psych evaluation before they become doctors, "Do they have empathy? No? You shouldn't be a GP then." I remember one time I went to the doctor for a cold like an in and out type thing. "My sinuses are infected just give me antibiotics if you can, if not I'll go home to lemon tea and soup," and he was making with the small talk which was fine until I mentioned I was in college for psychology and he poo-pooed my life choices and said I should become a doctor because 'you make more money'... suddenly I felt really reassured about my quality of care.

    Also as much as I hated the asshole of a chiro I worked for (which I should have complained about last post, haha) whiplash can indeed be serious like you said the more you know. It's amazing how much a little car accident can mess you up, and I'd recommend a chiro (as long as he isn't a douche du-jour like the one I worked for, I guess asshole doctors come in all fields of doctors) after one. Sometimes it doesn't work, but I have definitely seen that it can make a huge difference too. Notably some of the cases where it didn't work so well were when people continuously missed their appointments and rescheduled and such, but weird patients are another can of worms entirely. However, when the doctor proves himself to be an ass over and over again it only lends itself to what everyone has said even more. If your doctor is a weird grump then you don't want to go. Definitely find a doctor willing to work with you, having to put up with this dude on an employee basis was a mental health ruiner I can't imagine being a patient.

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  8. Quote from an urgent care doc about one of my (many) diagnosed conditions: Well, who told you you have that??

    I'd like to have hit her, but I was in too much pain.

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    1. Oh man. I hate hate hate seeing a new doctor, because I have several rare and unrelated medical conditions and as I go down the list I can always see the doctor looking more and more suspicious of my story.

      The congenital heart defect they buy, because the foot-long scar on my chest has clearly been there for a long time. The thyroid cancer is okay too. Then there's the didelphus uterus... and I can see the doctor start to look doubtful, and then I mention the vasovagal syncope ...

      One guy told me I should carry around a complete medical history. Which would be great if I hadn't had a good 50 doctors in my lifetime due to moving, switching insurance, and so on.

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    2. Exactly. Currently, it's: Osteoarthritis, Schatzki's ring, Gilbert's syndrome, eczema, allergies of all kinds, a septum that even after repair is in three pieces, an IUD that their computer system insists should be taken by mouth (uh...no.), congenital cataracts, optical migraines, and I'm sure I'm forgetting something because I usually do. *sigh*

      They stop listening when they hear that I'm 32 and have had the arthritis for about five years now. Then no one believes anything past that.

      The eye rolls...OH GOD THE EYE ROLLS.

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  9. My doctor is alright besides fixating on me being fat. Which, two things - one, I hate the term "overweight". Over what weight? And two, being fat does not mean you're unhealthy. It means you're fat.

    If I had the option, I'd probably switch because mine doesn't seem to actually understand much about what I actually have. I have PCOS and she fixates on my weight so badly - I actually had to stop a lecture midway when I went to her once because I had to go to work after the appointment - and that fixation is not helpful.

    Plus she put me on Alesse, which if you don't know, is a birth control which is basically really bad if your pcos causes ANY sort of androgen issues. It's honestly one of the worse birth controls to recommend for pcos. And then for the next four months, I was nauseated, dizzy, bleeding for 7 days at a time (and it only had a 6 day break), and I was having migraines which is not exactly a good thing. And my doctor basically said I had no other options because I was on the lowest dose of estrogen there was already. I was so miserable I decided just to suffer with the pcos symptoms instead.

    I'm still kind of offended on 15 year old me's behalf. Now, however, I just tell her what I want and she gives to me, but I still have to remind her I don't want to discuss my weight.

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    1. And hormonal BC and PCOS can both cause weight gain so if she's so damn concerned ...

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    2. You're my favourite :D I might have gained weight on birth control (I don't track it - I have a general idea of where I am, but I don't want or need to know the exact number) but the rest of everything feels better on the one I'm on now. My insomnia is less varied (it flares up when I get a "period" now, it's often hormone rooted), my skin is cleared up, I'm in less pain, my hair's less oily and growing faster, I just feel better all over. *I* researched and chose the bc I'm on now, by the way.

      Personally, I would rather actually treat the thing wrong with me so it doesn't cause so many problems in my future than hope and wish and cause myself actual damage. There's a history of mental illness in my family, and I know *myself* well enough to know that I would much rather be fat and mentally well.

      I know this isn't as serious as many of the other stories here (holy heck some of them are horrifying, the way doctors are allowed to behave), but I'm still kind of angry it took 5 years to treat a disorder that's thought to affect up to 10% of all women in a way that doesn't make me miserable.

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    3. I hear you re the weight issue. I was once told by a doctor that my pneumonia would be cured by weight loss not to mention laying prone and naked on a table in a womens health clinic for my first pap smear and listening to the nurse joking about finding my cervix "under all that fat". Worse when we realise I was only a size 16 at the time!

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  10. I've started to reply to this a half dozen times and ended up stopping and just crying.

    I have no visible tumor, no visible source of pain or vertigo, but experience it every day. I've been accused of making it up or just being fat so many times that just going to a doctor makes me panic and I can't bring myself to try anything new or enter into treatment because I can't face another round of doctors and meds and shame. I'm afraid to ask for meds, even mild ones. And every minute of every day I think that it might all just be in my head and hate myself for it. My latest doctor was kind and understanding when I explained, but then started asking me to justify my pain, and ended by saying I was too young to be such a burden on my family. When being a burden on my family is the thing I hate the most.

    I don't mean to complain or dump on you, but reading this meant a lot to me because it sounded so familiar. I'm so glad that you found doctors to help you, and that you feel better. And thank you for writing this.

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  11. Thank you for sharing this story. I spent ten years going to various doctors looking for a reason why my insides hurt every time I ate. I was told "it's just stress." I was tested for ulcers, had my lady parts looked at but it was never pursued. When I was 27 and in better control of my life, finances, and self, I sought out a doctor, explained carefully and in great detail all of my symptoms, duration, and when they started. She immediately referred me to a gastroenterologist. The gastro doc did a few blood panels, didn't like the way they looked, and did a colonoscopy. I finally had my diagnosis: inflammatory bowel disease, specifically Crohn's disease.

    And that's when the fun started. I was put on steroids, Asacol, Entocort all with no relief. Finally I was put on prednisone. For 4 months at a high dose. The doc warned me I was going to gain weight then at every appt when I was heavier would say "You really need to get a handle on this weight problem" and I would stare at her. The prednisone did nothing to help me. I was 30 lbs heavier, tired, in pain constantly, half sick all the time and completely miserable. She started pushing Remicade at me. Told me it was my "only option" I hesitated. I looked into the side effects. I didn't like them. I told her my concerns. One side effect was "sudden death" I expressed that I didn't want to take a medication that could kill me and she responded "Well, it was a VERY small number of people who died" and I said "Any number is too large for something like that. I don't care if it was one. I'm not doing it." She wouldn't let up about it, I fired her.

    I spent a year researching, cutting foods out of my diet, trying new foods that were supposed to help and I got my symptoms under control. I was finally functioning. The weight wouldn't come off though. After a year, I sought out a new doctor. I met with her, told her my entire history. She said to me "Remicade is a last resort drug. I don't see anything in your history that would indicate you needed that. Were you tested for Celiac? Given a CAT scan? Allergy tested?" no to everything. She scheduled more tests. I went through them all, finally ending with another colonoscopy. This time, it showed that I only had one small area of inflammation where the first one had 2 larger areas. She told me this was excellent as it proved that I could probably be drug free and control with diet for the time being.

    I see her every 6 months or so. The weight has finally started to come off (I was told that prednisone has very long lasting issues related to weight, water retention, and bone density problems) and I feel great. My new doctor flat out told me she doesn't want to put me on drugs because I'm doing well enough on my own, but that if anything in my dynamic changes, we will reassess then.

    It's comforting to know I'm not the only one who has gone through something like this, shuffled off by doctors. I spent 10 years thinking I was just "too stressed" and wondering if there really was anything wrong with me or if it was in my head. Thank you so much for sharing this story. It's become obvious to me in the past few years how messed up healthcare is.

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    1. I feel your pain and frustration completely! My Crohn's Disease developed when I was ten years old, but the first signs was the enteropathic arthritis that I got along with it. Doctor after doctor told my mother I had 'growing pains' and probably a stomach bug I had picked up at school.
      I was already a skinny child, and eventually I lost so weight that my mother just took me straight to the emergency room and refused to leave until someone came up with a real reason as to why I couldn't eat or walk. I had degenerated so quickly that they just turned around and told her that I had leukemia and would likely die very soon.

      Thankfully, a gastroenterologist who was visiting the ward suggested they do a few other tests before writing me off completely. They diagnosed the Crohn's Disease and arthritis, and then I proceeded to take every single drug that has ever been prescribed for those conditions.

      I'm 23 now and about four years ago I ended up on Humira (also called Adalimumab). It's an anti-TNF injection like Remicade(infliximab). For me personally it's been a life saver, but I always stated that I was going on it so that I could come off all the other drugs I was also taking. I don't mind the risk of serious side effects from one medication, but I do mind being on it and also ten others.

      I'm slowly but surely getting there. I've always controlled my diet, but if I have too many problems with food I've found that Modulen feed is marvelous. I had it as complete food replacement for about three months when I was younger, and it just gives your stomach a chance to rest and recuperate. Now I use it intermittently to have a little break from digesting food if I have inflammation or too many ulcers, and just tell people it's a protein shake. I don't know if you've already had it, but it doesn't taste too horrific if you make it with milkshake flavouring.
      It's a hell of a lot more preferable to being pumped full of steroids at any rate!

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  12. I had the same thing happen to me with my "doctor" during my second, third and fourth pregnancy losses. She absolutely refused to believe me when I said something was off with the pregnancies. Refused any sort of testing to sort out the cause of my miscarriages for as long as she could. After the last loss, I managed to find a doctor accepting new patients that finally got me into the fertility hospital program. Through all the testing, treatment and monitoring of my son's pregnancy that team was amazing and never ever dismissed me if I had a concern or a worry while I was in their care. I wouldn't have my child I'm sure if not for them. Turned out I had a blood clotting disorder and a progesterone deficiency and fibroids. My first doctor can rot in hell, she made me feel crazy, took me down a road of multiple miscarriages, and almost contributed to my marriage breaking up.
    My son is 5 now and I will never stay with a doctor that is too busy being right to listen to their patient.

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    1. Is it MTHFR? I have one genetic form of that, and ditto. It can cause so many other problems, too, but the many pregnancy losses were my biggest sign. No one, not my GP and not a couple of OBs had a clue. I ended up sort of self-diagnosing and self-treating with Thorne Labs 5-MTHF and upping dietary folate, eliminating gluten and dairy, and sheesh. Just a ton of stuff.

      Jenny, I'm so glad you are fighting and pushing hard for your own health, and I am glad you're surrounded by people who believe in you and are helping you fight. Keep going!

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    2. I'm honestly not sure what is the clotting disorder cause. The doctor said it was " border-line" and I ended up making it through my son's pregnancy with baby aspirin to treat it, and no plan to ever have another pregnancy again, I haven't asked for additional details. My progesterone deficiency was treated with suppositories until the placenta was able to take over production of it at about 10-11 weeks and I had many many ultrasounds to monitor growth of the fibroids and growth of my son. Thank goodness for Canadian health care or I would have been in the hole with debt to pay for all the care I had to be blessed with just one child.

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  13. Treat the symptom, not the cause. I've heard it too many times from too many people. So much wasted time and pain filled days.
    I'm happy you've found somewhat of a balance, but nothing will bring back the lost time.

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  14. Jen, I feel your pain..no really I do!!! About 7 years ago, I started heavy bleeding, like I had to use Depends undergarments instead of tampons or pads. At the time I was with Kaiser Health Care and the Ob/GYN told me, after a series of supposed blood tests, I had a hormonal imbalance and "Here, take these hormone pills and it will straighten you right out. It will also help if you lose some weight" Okay doc! You know what you are talking about because you are the professional! So I happily took these hormone pills and guess what..the bleeding kept right on coming. Soon after I started having HUMUNGOUS clots. Other than just going "Ewww" and saying it was natural, I go back to the KDoc and she did an ultrasound, "Well it looks like you have fibroids" Whoopie! Another right diagnosis! After 6 months on those pills, and a variety of other meds supposedly to help get rid of the fibroids, I was so whipped, I could hardly walk to the car from my front door! Okay, enough of this bullshit. I changed health care providers to Blue Cross Blue Shield. Within 14 days FOURTEEN DAYS I was diagnosed with fibroids again, however, the minute my blood work came back the new OB/GYN called me and said, "You are scheduled for surgery on Friday to remove the fibroids because you are one point away from needing a blood transfusion" After the surgery I was back to my normal self. Then my dad died, then my mom was murdered by my brother, I lost my job and my apartment and I went into a tail spin of depression you can only imagine. The next year of my life was spent in a haze. When the clouds finally cleared I found myself working at a cable company call center. And then the pain started. Like you I was all, well I hate my job so that's why I am in pain or I am so depressed I am imagining this pain. Went back to the docs and was diagnosed with Fibromyalgia. Then one day I tried to get up from my desk and my left leg gave out. What the holy hell....so now I have 3 herniated disc, depression, fibromyalgia, degenerative disc disease and am on 2 types of high grade narcotics (Georgia won't let me smoke weed) the Gabapentin for muscle spasms, muscle relaxers, anti depression meds and sleep medicine cause the pain is so bad I cannot sleep without it. So yeah I guess I "Want to be sick" too. Sometimes you luck up and find a doctor who actually cares about his/her patients. Now with no health insurance, I cannot continue my physical therapy, I can no longer get my epidural injections to help me walk, so I am always high on narcotics. The only bright spot is that my boss from my old job gave me a chance to work from home and that's what I do to earn enough money to go to my doctor and get more drugs. I really wish I could be able to stop taking them, but even when I try to ween myself off them, the pain is unbearable. Every day is a struggle to get out of bed, but I know if I don't manage that small task, I would give up for good.
    Taking one day at a time......

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  15. First of all I think we always feel that because the medical field has come so far since the 50's in fixing broken things, think of heart attacks, people would almost always die and now operations for the heart are done so routinely as getting your teeth pulled. Machines tell us so much about what is wrong with a person's body that doctors have forgotten how to listen to a patient.
    So sorry that you had to get one of the lousy ones first. But glad you found a good one.
    I have dealt with a chronic disease for 39 years and have waited for some really bad stuff to happen and so far I am still doing pretty good. My sister has the same thing and so does my brother. My brother on the other hand has done very badly and has had his vision, autonomic nervous system, and heart get worse and after several strokes is now on disability at age 60. He can't walk around because when he does he just faints without warning and so he doesn't do anything anymore, it's very sad. I have to say that the difference is his doctor that he had when this all started to happen. He was in an HMO because his wife thought that would save them money, money that they now have in the bank like misers. This doctor didn't do the normal blood tests or treatment a diabetic should receive. Although having diabetes means you also must watch your diet and things like that, he certainly wasn't given the correct tests and medications he should have. While my sister and I get blood tests and see a doctor every 3-4 months, my brother never received these tests until he woke up one morning and couldn't see.
    Jen you did the right thing you read about things that might have been your possible problem, and while you shouldn't have to do that, it does make you a smarter person and I always read anything and everything I can about my disease.
    One thing I want to say about fibromyalgia (sp?) is that some people find a connection with it and gluten and people who have celiac disease or IBS.
    I have also heard good things about dark chocolate and fibromyalgia it's supposed to help, but it has to be the right kind. Check this out: http://lechocolatdubouchard.com/category/blog/
    We have this shop in our town, yum, check out the channel 2 news video at the bottom.

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  16. I totally relate to this post, and it's the reason I have chosen to have a naturopath handle my care for the last 2 years. Several years ago I began having daily migraines- as in, I was literally in pain for 25 days of the month for months at a time. I went to a regular doctor who told me she was really sorry, but I was just going to have to CHOOSE which headaches to treat, because she could only prescribe one pain killer through their pharmacy (it was a low-income clinic) and even if she could prescribe something else, I'd only be given 12 pills a month due to pharmaceutical company regulations. I was furious. Apparently it made no never-mind to the doctor that I couldn't get out of bed most days due to the pain, couldn't hold a job, and couldn't think straight most of the time. Fortunately I found homeopathy and acupuncture, which not only take away any kind of pain I have, but prevents not only the headaches but my depression. I spent 3 years in excruciating pain because of asshole doctors, and I will not do it again.

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    1. Just to insert my son's experience if it would be helpful. Not a doctor here. My son dealt with abdominal migraines in 2nd/3rd grade which transitioned to traditional migraines that would sometimes last a month and lead to hospitalization. Best doc he ever had told us to give him 200mg of B2 (riboflavin) daily. This nuero had done his research on pediatric migraines and said the studies showed that the B2 worked better than pharmaceuticals - but you can't get funding for something pharma can't patent and charge big bucks for. Son has only had 3 or 4 one day migraines since.

      Daughter started migraines with visual aura this year. Started her on the same 200mg B2 and hers dropped to only 3 in the last six months.

      NOW we have a ped. neuro who doesn't know a damn thing about autism, migraines and refuses to handle my son's autism medication. Blech...

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    2. Wow, that is interesting! My migraines are almost exclusively stress/depression related, and they began when I had brain surgery to remove a tumor as a child. I've taken B vitamins for them, but I've never pinpointed exactly which one gave me any relief- I'll try this!

      Incidentally, there is a TON of evidence that autism is linked to inflammation of the intestines. A lot of people I know have almost cured autism by following the G.A.P.S. diet, a diet which slowly heals and rebuilds the gut lining. Do some research! There are a lot of natural non-pharma ways to control autism! Cause you are SO right- if you can't charge people up the ass for it, no one wants to prescribe it to you, or even tell you it's an option.

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  17. Wow Jenny that really sucks. I am so pleased that you have got yourself a decent medical team and that you are feeling better. Reading your story and the ones in the comments is quite horrifying. I am so grateful that apart from weight issues, I am healthy and haven't had to go through what you have gone through. Well done to you for having gone through all this and coming out the other side stronger. And you are right, just because they wear a white coat, doesn't make them right.

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  18. I'm so sorry you've been treated so poorly. I got my fibromyalgia diagnosis when I was 15, along with a book on fibromyalgia clearly written for people much older and more depressed than I was. It was all about how your life was essentially over now and it was up to other people to understand that and accommodate you. It made me feel really anxious and upset, and so I put it aside and basically avoided learning more about fibromyalgia until my health got so bad (in my twenties) that I couldn't function very well or at all for long stretches.

    I'm 34 now, and I just got rediagnosed a short time ago. Since you have a hypermobility component as well, I'll mention this with the caveat that I don't assume you have this as well, but it may be a useful thing to know about. I was told I have Ehlers-Danlo Hypermobility Syndrome, which is a connective tissue disorder. I'd been dislocating my hips and ribs a fair amount and was seeking help for it. I have since been told by my doctor that it's likely that my fibromyalgia is part of the Ehlers-Danlos. I saw a geneticist about it, since it's inherited, and luckily all of my kids seem to have avoided that particular legacy. It's comforting to know they are less likely to have chronic pain issues.

    Like I say, I don't assume you have this as well, but since you mentioned hypermobility, I thought I'd throw it out there in case it's useful to you. I think women in particular are often seen as making it up for attention, and it can be so frustrating trying to get someone to listen and understand. I'm glad you eventually found someone who could help.

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  19. Thank you, Jen. Thank you for sharing your experience!!

    From the time I was 11 years old, I had weird pains in my back from below my shoulder blades all the way down to my tail bone. I was a "chubby" kid. I was not obese. Heavier than "ideal weight" but NOT fat at the time. We lived in the country, we played outside all the time. We did not sit on the couch and play games or watch TV. We had outside chores. See? Not "fat and lazy."

    When I was 14, I was suddenly paralyzed. Literally fell onto my face on the floor because I tried to get up from a chair and my legs just didn't work. From that week in the hospital, when the paralysis just evaporated, until I was 28, every doctor I saw told me that I was fat and needed to lose weight, then my back wouldn't hurt anymore. I was in the marching band all through high school. We still had tons of outside chores. We always had some kind of activity going on. I was heavy, but not fat. Where did the doctors get "lose weight you'll feel better"??

    The older I got, the more frequent and intense the pain became. Needless to say, I gained more weight from decreasing activity.

    By the time I was 28, I was definitely "fat", however, I had a new problem. I suddenly lost all feeling in my left hand. Then the numbness progressed up my arm until the whole arm was numb. My arm still worked, but I dropped things all the time, could not feel heat or cold, and ended up with constant bruises on that arm because I would bump into something and not know it.

    Finally, my doctor suggested I needed an MRI, which was a relatively new technology at the time. My insurance didn't want to cover the test, so my parents (God bless them both!) paid the deductible so I could have the MRI. Fast forward 6 months and 3 neurosurgeon's appointments later, and I was having surgery on the base of my skull and the cervical vertebrae. I had an obscure birth defect that can only be detected by soft-tissue tests such as MRI. All those x-rays and bone scans I had done over the previous 14 years showed nothing. It was only the right test at the right time. I had the surgery, felt a whole lot better, went back to my full-time job, and otherwise got on with my life and raising my daughter. I had a relatively good run for over 12 years.

    Now, I have neurological problems no one can explain. Random dizzy spells. Pain shooting down my spine, into my hip, and down my leg. I have blacked out just walking through my house. I am blessed to be able to work from home, but I do punch a clock, so to speak. There are days it's everything I can do to get from the bedroom to the office down the hall. I have just recently gotten into my company's health insurance plan. There will be more doctor appointments in my future.

    I have been tested for RA, MS, lupus, epilepsy, etc., then was dignosed with fibromyalgia. Please understand, I am NOT putting down the diagnosis. I know fibromyalgia is real. I am angry that the doctor literally said, "Well, all the tests came back clean. I guess you could say you have fibromyalgia." That was my "diagnosis." It's that kind of dismissiveness that makes me detest the medical profession.

    I'm over 40. When I tell you I hurt, I mean it. Dammit, just LISTEN! That's what I hope for the next round of docs and/or tests. Listen to me. LISTEN!

    God bless you all dealing with your own problems! I pray you find doctors that listen with and open mind and some empathy!

    Thank you, again, Jen for posting your story and allowing us to share ours.

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  20. I can kinda relate to shitty doctors... for me and for my dad. My dad was in the hospital last December due to ammonia poisoning cus his liver is not really working anymore, and his primary doctor never realized this. And in general, I think he's just a shitty doctor. From what my dad tells me (I've never gone in w/ him to his appointments), the doctor just doesn't seem to care. In the beginning he seemed like a cool doctor, giving my dad authorizations to see specialists that his previous doctor had not wanted to do, but how could he have missed cirrhosis of the liver? That's a biggie. My dad was disabled for a few months, but around the 3rd month the doctor was like "That's all the disability I can give you, since I am not allowed to give you anymore since you can walk, talk and see." But my dad's feet are still swollen and his hands cramp (he's a cook, so yeah, it's kinda dangerous), but he's back to work.
    Then he also went to a psychologist and I've been going to treatment for depression/PTSD so a lot of the symptoms I had my dad has so I finally convinced him to go, and the guy tells him straight up, "I don't think you're depressed". So my dad is taking antidepressants, but I don't think that's the solution, but he needs to find a good psych (language barrier impedes him going to the one I'm seeing)....
    In my case, before I started going to the psych I'm seeing I was put on anti anxiety/depression meds by another one, so I didn't want to drop the treatment mid-way, but she was a terrible doctor. Just like how Dr. Ref told you "It sounds like you want to be sick" she told me that maybe "I was seeing things that weren't there" when I told her every time I saw a certain someone I felt like he was giving me lecherous looks (this was after I told her he was my aggressor). That of course did not make me feel good, but luckily that didn't make me give up on treatment and even though it took me like another year before I finally decided to seek treatment again, I looked for it.

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  21. Lurker here. Thank you so much for writing this. I always find your writing to be incredibly nuanced, but this really strikes home with me. It brings up such an important point about ceding power just because someone claims to know more about your health than you do. Thanks!

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  22. I'm so sorry this happened to you.
    I hate the attitude of doctors to mental health issues. I was diagnosed with OCD last summer. My 'obsession' is thinking I have an illness which would result in me researching it for hours each day. It was distressing and I would begin to feel like I had symptoms of the illness. Doctors would take tests and said time and again 'do you want to be ill?'- it does make you feel really ashamed, like a total idiot. The thing is when I went in for the results I was often in floods of tears, having convinced myself I had the illness, but they would always give advice like 'try and be more positive' and 'get some exercise'. One gp actually said to me 'you women do worry about things more'. Another time I was terrified I was pregnant and it had delayed my period for weeks. I had done three tests and was such a wreck that it destroyed the relationship I was in. I started my period the morning of my doctors appointment and she was just like 'you're not pregnant- panic over! feel better?' I said 'no not really' and she just looked at me in a confused sort of way and again I felt like I was being a total attention seeker.
    Thinking I was going mad I researched anxiety online and read about ocd. I can honestly say that the most support and comfort I have had was from people on forums. Not to discredit family and friends who are awesome but it's difficult for someone who doesn't have ocd/ is not medically trained to understand how irrational it is.
    Sorry for the long winded reply- there are some brilliant doctors out there but some who really need to learn to listen to their patients. If there was not a problem, they would not be at the doctors surgery in the first place!

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  23. I'm so sorry you had to go through that.

    My own "bad doctor" story: Six or seven years ago, I fell down the stairs (again) and hurt my ankle. My GP sent me to a "specialist" to get proper treatment. That specialist was the second worst doctor I've ever been to; I found out much later that he's infamous for his bad treatment. (The worst doctor was the dentist who pulled out two of my teeth without any anaestetic. I was ten at the time.)
    Anyway. The specialist did an x-ray and then moved the hurt foot around a little to "test the tendons". I'm not usually a loud person, but during that test, I quite literally screamed so much the neighbours heard me. When I came out of that room, I had complete strangers patting me on the back asking if I was okay.
    The specialist's verdict? "It's nothing." Yeah right. To this day I can't run, or roller blade, or even wear high heels without being in serious pain. Nothing, my shiny metal arse.

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  24. As I have mentioned before, I have 3 special needs children. I really struggle with doctors, teachers, and others dismissing their well-diagnosed issues. My sister had Down's Syndrome and at times I have envied my mother for never having people accuse her of making up her child's disability.

    But your take on this, "I suffer from invisible disabilities, so I have the privilege of hiding them, if I want to." brought tears to my eyes. I have tried to teach my children that every weakness is the flip side of a strength so their "disabilities" are just "different abilities." I plan on sharing with them your attitude about the flip side of hidden disorders. It was so timely. Thank you for sharing your struggles, for it has helped lessen ours.

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  25. :( I'm really glad that you've gotten the right treatment finally!

    As a follow up on RLS - I have it too, how much of a bitch is it? Instead of tingling, I have leg pain, someone likened it as a headache for my legs. UGH. :/

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  26. Do I ever feel your pain. I gave up on doctors four years ago. I am so tired of being told I don't have a thyroid condition. You know what, sure a bunch of my symptoms could be caused by how fat I am. Lord knows its a vicious cycle, where being fat makes you tired, and being tired prevents you from doing much to lose weight.

    You know what has nothing to do with being fat? My goiter. The enormous, hideously deforming, self esteem destroying swelling in my neck that i've had... forever. As long as I can remember. I was tormented in every grade I was ever in for it. It randomly swells and goes down because apparently I have cysts that form and then vanish periodically.

    I cannot find a single doctor willing to look at this fucking thing and do anything about it. And right now, I can't even find a doctor. After a disastrous event where they wanted to biopsy the fucking thing, only for a tech to tell me he couldn't figure out what the doctor wanted biopsied, I gave up.

    I feel like there's no point, and I am so tired of being told to stop eating chips. I hate chips. I have a mild chocolate allergy and I never eat fast food because its vile. So what the fuck.

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    1. Hey Amber,I know the feeling on the thyroid,it's a total bitch,I've had 2-3 years since being diagnosed of being told hormone levels were only slightly out and to start low levels of eltroxin for it. And the usual,get exercise,lose weight (BTW I'm around 100lbs due to no appetite from being hypo)can't get a lot of exercise as I have damage to knees and ankles and currently a dislocated shoulder,all down to falls I've gotten during stages of brain fog. It all comes down to the doctor and their pet peeve whether it's weight,bp,smoking,whatever. So few actually listen and you're made to feel crazy and wanting to be sick,when it's case of just wanting a name for what's causing the shittiness! Luckily,I found a psych a few months back who can make the connection between depression and thyroid function and is monitoring my levels to sort my thyroid out and hopefully get me off the anti depressants I now doubt I even need,as it all boils down to this tiny fucking gland,sorry if I'm rambling,just so frustrating to see how much time is wasted due to doctors superiority complexes and unwillingness to listen!!

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    2. I don't want to be all internet-diagnosy on you, but here's my story: I had a large swelling on the right side of my throat. My thyroid tests all came back square in the middle of normal. We biopsied it, and the biopsy came back with "totally benign, don't need to worry, just a cyst". Finally, it had gotten to the point where it was uncomfortable to swallow and I insisted on having it removed.

      Three days later they called me and it was totally cancerous, it just happened to be the type that biopsies often miss. I had to go back and have the rest of the thyroid taken out.

      You might consider floating the idea of getting it removed. "Because it sucks" is a good enough reason!

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    3. My mother had a thyroid problem along with a plethora of other health issues. She had lupus which caused blood clotting which they didn't get the right diagnosis for years because they assumed it was phlebitis. Lupus is still pretty new to the scene medically. She was also a preeme as a child and in the 50s things were different medically. She had a lot of health issues due to that including vision problems. Her issue was that her thyroid was completely inactive. The doctors always hounded her in her weight and I grew up in an all organic home with fresh veggies from our garden, our diet wasn't bad, in fact it probably kept us healthy. She was so embarrassed and it always made me so mad to hear about the next doc telling her to lose weight. They finally gave her thyroid meds and she dropped 80 pounds in just two months, only it started interacting with her meds and she had to go off of it and she put the weight back on in as many months, it was really hard to see her suffer through everything and I was pretty sure she suffered from bipolar disorder but we grew up in a home that shunned mental illness so she never got help for it. It is sad what some doctors do, they forget the oath they took and they seem to forget that their words do harm.

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  27. I'm sorry for the crap you've gone through. I've been in pain and chronically ill since Jr. High and I've gotten the bad doctors and the people that think you are faking it. Worse was the people in my church, who always claimed that I wasn't healed because I didn't love God enough or that I was being punished for something, and that if I had enough faith none of this would happen so it was really my fault. I actually had people praying over me asking God to forgive me for being such a terrible person that I had to be in pain all the time. That includes super religious family members, who can watch me vomit blood and say that it's not really anything that I couldn't stop if I wanted it to.

    Reading all of the stories here has gotten me teary eyed.

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  28. Grant Searles. That's the name of the quack who nearly killed me. Yes, I'm putting his name out there. That is how certain I am that, if he were to try suing me for libel, that I could prove he deviated so far from the standard of care that I would win. He was a new general doctor in the ER who was assigned to me, and when it became clear I was going to be there for a long, long time, he refused to listen to the doctors who specialized in my condition. His actions ended up being the exact opposite of what should have happened, and I landed in a coma and at one point my parents were told I would be a vegetable - if I survived at all. He tried getting the hospital to discharge me when I was still in a coma, and they didn't. He also refused to let any other doctor take over my care, which is an odd action when a patient is uninsured and others want to take over. I came out of it and started pulling some tubes out of me, which I found out later were keeping my condition from clearing up. Then I started getting better, and found out they weren't replaced because he had gone on vacation, and other doctors, better ones, started doing the right things. It came as a shock one morning to find out he had ordered my discharge, and that time the hospital wasn't fighting it since I Was considered stable, even though my odds of returning to the ER were high. Sure enough, I did end up back in the ER, but I refused to go back to that one. So they got what they wanted, and I got some mild brain damage (more apparent in person when I start talking over someone without realizing it, which is why I'm so shy in person).

    I finally got a great doctor who actually advocated for my care and did a procedure not legal in the US but it common in Europe. That guy could have lost his license, but he was putting my needs first as EVERY good doctor should.

    There are good doctors and there are ones who shouldn't be allowed to enter hospitals or doctor's offices in any capacity other than as a patient. We have to be our own advocated and not take bull. Be firm, but kind, and you'll usually get better care.

    Too bad it's so hard to have the bad doctors relieved of duty. One of them made a mistake that resulted in one of my loved ones spending the past four years disabled over a simple surgery that was done horribly wrong, and the doctor has a long history of the same mistakes and even killing people. :(

    I'm glad you got your diagnosis. It's horrible how long it can take to find a good doctor sometimes, and how much damage happens in the meantime. :(

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    1. It was a good doctor that saved my mom. She traveled 8 hours to see him. He gave her a medication that just hit the states but had huge success overseas. I've found in my experience, and I've had a lot at this point, teaching hospitals are the best because the doctors always have someone looking over their shoulders. I survived something I shouldn't have and I owe it all to the doctors who worked on me.

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  29. Can I just point out to the people who say overweight people are lazy that you do all that running and I'm 120 lbs and complained every day when I had to walk from the dining hall to my dorm? (My campus is really small, it was maybe a quarter of a mile).

    As for dumb doctors, my mom once went into surgery and specifically told the anesthesiologist that she's allergic to morphine and couldn't take it. The doctor was like yeah, yeah, whatever you say, and gave her morphine anyways. Like, it was in her charts, he was just being a dick.

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  30. I have Fibromyalgia, Lupus, and Migraines. Also Interstitial Cystitis and Trigeminal Neuralgia which are thankfully in remission. I feel ya.

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  31. What do you call the person who graduates last in medical school?

    A Doctor! :)

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  32. I'm so glad this Dr. Red is no longer practicing. She sounds awful.

    I have a large scar at the back of my neck from a car accident. We could compare, lol.

    Thank you for this post. Hopefully it will encourage others to not automatically accept the first diagnosis they are given (or lack thereof, in this case) and seek a second opinion.

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  33. I am very lucky to have a good doctor. Whenever she wants to prescribe medication she goes over the options with me - actually talks me though them one by one, and helps me choose what's best for me. She keeps up to date on medical news and is pleasant to interact with. I've always appreciated her, but reading this post and the following comments make me appreciate her even more. So, thank you Dr. Marx. You really are a diamond in the rough.

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  34. My mother's GP misdiagnosed her two golf-ball sized brain tumours for many years, until they almost killed her. The ER doctor was the one to notice her dilated pupils and dehydration (collapsing veins after days of vomiting) and saved her life with emergency surgery.

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  35. I always feel terrible when I hear stories like these. I think it's a combination of both of a general lack of information in the general public regarding medical matters, and the fact that paternalism is still clinging to the medical community. People should always question their doctors, always. It's your health that's in the line, and you have every right to be treated like an adult, not like an attention-seeking child.

    I'm sorry this happened to you, Jen. We're supposed to be better than that.

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    1. Totally agree on the questioning doctors part.Kudos for putting that out there. So many patients feel intimidated by their doctors and so many doctors go out of their way to intimidate their patients. It's ridiculous! ~Cindy

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  36. I'm one of the anons above I don't know why it posted anon.

    Anyway a bit of advice: Go to university hospitals when at all possible. I know some people are afraid of teaching university hospitals (they aren't the same as residents at a local hospital). But don't be. Those are the hospitals staffed by doctors who, because they are also the professors, are the most up-to-date on everything. A nice bonus is they WANT to find out what's wrong with you AND you're likely to have multiple doctors overlooking your case. I spent Monday night in the ER, and one doctor thought the abscess I have looked very large and that it should be lanced, but the other doctor who was accompanying a student didn't agree, and so they called in another doctor. I have four doctors there (including the student), and came up with a non-invasive plan of action that is working fine. I'm not saying the first doc is a bad docs. They're not perfect. How they handle things is what matters. He was very kind about everything. But in a regular hospital where people are burned out, I probably would have been cut open instead of having the benefit of a second and third opinion.

    Generally I don't talk about my medical history, but it's extremely extensive, and I've dealt with major issues my entire life and will deal with issues for the rest of it. I'm medically unstable, but have learned to just suck it up and still do a lot of normal things. I've been in everything from small-town hospitals to county hospitals, well-known hospitals (like Stanford) to university teaching hospitals (well, Stanford is one too, but others), and I can tell you university hospitals tend to be the best.

    Some people really shouldn't be doctors though, or have anything to do with patient care.

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    1. I already replied to someone above with the same thing. I think I survived because I ended up in a teaching hospital.

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    2. No, please, there can be idiot doctors at teaching hospitals just like everywhere else. I was misdiagnosed (in one case rather seriously) at TWO different teaching hospitals. I found that the doctors there were just more convinced that they knew what they were talking about and I was wrong.

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  37. I hate hearing about situations like this. I have one sort of similar. I was diagnosed with fibromyalgia after years of all sorts of tests and doctor visits and general miserable-ness from 1) being in pain and, 2) having people just think I was lazy or that it was "all in my head". I recently started seeing a rheumatologist and he put me on gabapentin. I started to get some weird heart palpitations with it. I went to the ER last week because my husband begged me to. When the doctor came in to see me, I told her I was on gabapentin and that my husband and I were concerned that it was a serious side effect of the medication. She asked why I was taking it and when I told her it was for my FM, she laughed and said that I didn't have fibromyalgia. That I was too young. And she demanded to know who had told me I had it. I informed her of all the testing and doctors and shit I'd been through and then I told her to get out and send a new doctor because I didn't want her near me. I was already in a bad place at this point. I was so overstimulated from all the stuff attached to me, the bright hospital lights, the crying children, the phones ringing... my body felt like it was on fire and then she says that to me?! It's amazing how in three sentences she could knock me back five years. I started to feel all those same feelings that maybe I was overreacting and there wasn't anything wrong with me and that I was just lazy or fat or attention seeking. They sent in another doctor and in the end I didn't get any help because they didn't want to risk telling me to stop taking the gabapentin without my rheumatologist there. When are doctors going to start being educated on how to give adequate and compassionate care to patients with these sort of illnesses? :( Anyway, sorry for the long comment. Thank you for sharing your story. It makes me feel good to read about other people finding that light at the end of the tunnel. It makes me feel hopeful.

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    1. *I hate that there are still situations like this

      was supposed to be the first sentence... why i decided to type a comment when I'm feeling foggy and loopy is beyond me. I hope this comment even makes sense, haha.

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    2. I have that overstimulation thing too. Do you ever feel like somehow your senses are getting mixed up somewhere? Like you can here lights and see sounds. Taste smells. And it seems like you can feel everything, just EVERYTHING against your skin. It is absolutely horrible. It makes me wish I had a sensory depravation tank like Dare Devil did in his movie. I watched that movie again recently and thought to myself "lucky bastard... I bet I could sleep if I had one of those too". As it is, most nights I feel more like the princess and the pea. Fibro Sucks!!! ~Cindy

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  38. I have Fibro, CFS/ME, DDD, and a long nasty list of mental issues. Unfortunately MM isn't legal in N.C unless you have cancer. I've been on opiates for four years now and I'm bedbound most of the time. What you said about clothing and trigger points, people think I'm crazy when I tell them that. And showers.... if the water pressure is too strong it feels like needles attacking my skin. This illness sucks. And being hit with the triple whammy of Chronic Fatigue and Degenerative Disc disease triple sucks. We're told FM patients can benefit from lite exercise right. Well CFS patients don't. It saps your energy and leaves you in more pain than you started with. Most days I feel like I'm in a fucking catch 22, damned if I do and damned if I don't. So I feel ya girl. May was FM and CFS/ME awareness month. And we REALLY need awareness. From doctors and R&D to caretakers to patients and so on. This illness is bad enough without us having to fight tooth and nail just to get someone to believe its even real! My hubby keeps telling me he'd gladly go find a dealer and get me some weed if I wasn't terrified of A) him being caught and B) there being something other than weed in that dimebag lol! We're trying to get medical marijauna legalized down here but its a long, hard fight. I'm just about ready to say the hell with it and move to the first MM legal state I get to. You are an inspiration my friend. You give me hope that maybe one day my life won't be an extremely painful crapfest. Thank you for sharing your story. Much love and fluffy fibro hugs (the fibro equivalent od air kisses lol) ~Cindy Boswell. Holden Beach N.C

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  39. I'm glad Dr Red is not your doctor anymore and you are feeling better.
    My dad died recently of a disease that he had shown symptoms of for years. His doctor would just brush off the symptoms and say that it was down to the fact he was diabetic. When we found out it was too advanced for anything to be done. Losing my dad is by far the worst thing that has ever happened to me- don't think I'll ever feel better. But to everyone who reads this, please never doubt your instinct- if you or a loved one think there's something wrong, get a second opinion. Hell, get a third opinion; don't take the word of a doctor (or anyone for that matter) as gospel.

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  41. I'm really sorry to hear you have had such horrible experiences, and there are certainly doctors who should not practise, but doctors have to deal with a lot of difficult patients as well.

    Patients lying, not taking their medication, just wanting easy fixes without having to change anything about their lifestyle, patients who just want some certain kind of medication to get high or to lose weight...

    And it's good to be informed about your own condition, and certainly if you have been sick for a long time you become an expert on it, but there are a lot of people who read something up on the Internet and decide they know better.

    I'm not going to share any particular stories, but I know several cases where a parent has ended up endagering their child's life becayse they 'knew better' than a pediatrician.

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  42. Ugh, stories like this make me crazy crazy mad. I am not a doctor, but I'm in a medical field and I am training in acute care/rehab.
    In any case, I'd just like to toss out there that even I, a grad student in a tangental profession, have been taught that YOU DON'T ASSUME THINGS ARE NONORGANIC/FUNCTIONAL UNTIL YOU ARE ABSOLUTELY SURE. Even if symptoms ARE nonorganic, they can often co-exist with organic symptoms (aka, symptoms caused by a bodily deficit) and it's a nuanced and sometimes impossible process to figure out what's what.
    Finally, even if a person has a legitimately psychogenic disorder, a key point is that they're not doing on purpose or to fuck up your day as a caregiver, it's a true mental illness. They think they are sick. The symptoms they are having cause them real suffering. The pain they are feeling hurts them. And if the news that they are suffering from a nonorganic illness is shared with them in a sensitive way, it can be truly helpful to them. Psychogenic illness is NOT NOT NOT the same thing as malingering and too often they get lumped together. You should never, ever blame a patient for "wanting to be sick".
    The sad fact is that mental health and obesity are still misunderstood and stigmatized in society, which of course bleeds over into the medical profession (medical professionals are products of society too, unfortunately). It's one of my missions to combat this nonsense as much as I can in my field and other fields when possible.
    I think the reason I get so mad is because a) I have family members who are mentally ill and b) part of me really wants to go to medical school, but my parents live under the poverty line so it's not happening in this life. When I hear about doctors who treat their patients like they're out to get them or like they're a chore, I basically think, "Wanna trade, jackass?" Never become a doctor because you "like science," become a doctor because you love people!

    This is a general PSA for anyone who's as much as a medical nerd as I am. It's taken from Duffy, 2013.
    Somatoform disorders: symptoms unexplained by general or specific medical conditions
    Conversion disorder: physical symptoms without demonstrable organic cause where there is a link between symptoms and psychological conflicts. ie, your grandfather who had Parkinson's died suddenly and you find yourself shaking uncontrollably for days.
    Somatization disorders: Chronic illness characterized by multiple complaints and a belief that one is ill
    Factitious disorders: deliberately feigning symptoms because of an uncontrolled, unconscious need to fill the role of "the sick person"
    Malingering: deliberate, voluntrary feigning of symptoms for financial/personal gain

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  43. "Let me pause here to explain why some people, when seeking a diagnosis, seem like they "want to be sick." It's because when you feel 100% shitty, 100% of the time, you want to know why. You want to put a name to why you feel the way you do, in part because you can then be proactive about it and work toward feeling better, in part because you secretly suspect you might be making it all up without realizing it. To hear, "You sound like you want to be sick," is devastating to people struggling with an undiagnosed chronic illness."

    Thank you. Thank you. I have fibromyalgia, PCOS and an anxiety disorder, and I had to fight tooth and nail to even get a diagnosis for any of them (except the PCOS thank fuck, not even my parents would argue with an ultrasound). Hell, it took me 3-4 years to go from "I can't see shit" to "today I will see a ophthalmologist", just because my family was so resistant to getting me a diagnosis.

    And you know...yes, I want to be sick. Because "sick" is a better (self)label than "pathological liar", which was the one people shoved on me all my life because I was in constant pain and never really getting better, and that "just didn't happen". So thank you, seriously, for articulating it this perfectly. I teared up, reading.

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  44. How about the funtime "You don't want to be on pills for the rest of your life"? That's what I got my first year of college when I had three seizures in as many months. And they weren't my first--I had two in high school. I figured out that they were stress-induced, and I REALLY wanted medication, but all the doctors and nurses told me that I should just manage my stress--my first year of college??--and that I was too young for medication. Um, no. Hand over the lamotrigine, please.

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  45. I find it rather frightening that having the "right" doctor is what can make one healthier or not. At the end of 2006 I had a breakdown, or hitting the wall or whatever you want to call it. I was burnt out from lots of things going on in my life, living in a foreign country for 7 years and working too much.

    Moving back to my home country (Sweden), I tried to start over, because you're not sick if people can't look at you and see that you are (apparently). But I quickly burnt out again. One of the first doctors I saw after a few months of being sick again basically told me that he didn't think I wanted to go back to work. Something which is foreign to me. Who would ever want to be at home sick, feeling awful and tired, and having no money to live on?

    Eventually they figured out that I have fibromyalgia and chronic fatigue syndrome. So I definitely know what it's like to feel like you can't keep your eyes open, and I too gained weight after getting sick. When you have no energy, it is sadly very difficult to go out and exercise. I'm usually glad still when I make it out the front door.

    I'm finally getting better though, because I now have a doctor that pays attention to me and is pushing for me in the right ways. It took about 6 years to get one that actually cared.. but at least I have one now. It makes me worried for the people that don't. A lot of people still get to hear that they're not sick, because they have a disease that's not obvious when you look at them. Which is just sad.

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  46. Thank you for sharing this. It's appalling just how much doctors lie and how much information they keep from their patients. I was hospitalized with a DVT back when I was 18, and the whole time I was there I never had any discussions about which meds I wanted to be on or had any control over what choices I had to get better. Now I know there might have been the slightest chance I could have had an injection in my leg to break up the clot directly, instead of waiting months for it to dissolve on its own, which then caused me to have vein and valve damage in my leg because it took so long to break up. Or I at least could have been prescribed compression stockings to help, but no, I was only told to wear those after about a year of recovery. Not to mention I told my doctor at the time that I suspected a mini stroke prior to my DVT, and she blew it off as "highly unlikely" due to my age. Not like that stopped the DVT.

    I've been looking into legal action for another matter concerning the medication I was put on that led to the DVT in the first place, but I had to request all of my paperwork first. Found out my kidneys were possibly starting to fail because of the pain meds I was on while hospitalized. It's stuff like that that I never heard a single word about that really tick me off.

    It's really hard to be pro-active when you aren't told the whole truth, or you're information is brushed off as non-relevant. I'm glad you were able to get a second opinion and that you're on the mend.

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  47. I wanted to add my story into the mix. I've spent years trying to get help for the pain that I have in my neck and have been suffering from migraines so bad they make me throw up and I know it is related to my neck.

    Each and every doctor I saw I knew they were judging me before I even tried to explain why I was there. It took me awhile to realize that they automatically assumed that I was a drug seeker. Even though I never asked for pain relief, I always simply said I wanted to be fixed. It wasn't until three years ago when I had a a work related back injury and the doctor at the free clinic was feeling my spine and noticed some severe swelling in my neck and asked about it. I explained to him that I got the brush off from every other doctor so I just gave up. He said he couldn't do anything about it given that the visit was limited to a workman's comp claim but he gave me a number of a local doctor accepting new patients and I was diagnosed with degenerative disk disease. Granted I wasn't fixed but I had the answers I was looking for and knew how to deal with the pain.

    I know that a lot of doctors will write off younger people as drug seekers. I also learned while I was out recovering from a serious car wreck, while watching one of Dr. Neil deGrasse Tyson's presentations that the majority of doctors aren't much smarter than average, although he didn't say it that way, he only pointed out that we put too much faith in the practice when we don't question their results because most med students fail out of his classes and he asked another professor in the audience how many med students made it through his class, that professor said, not many at all. I've learned to do my research despite possibly offending the doctor's ego for knowing so much about my subject.

    I've also been diagnosed with fibromyalgia but my doctor warned me about the side effects of the drugs I was on. I do wish that we had a medicinal marijuana law out here because I do hate taking painkillers due to my car wreck and would love to be off them but until that day comes I still need them on my bad days. That day will come.

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  48. just because someone is wearing a white coat doesn't mean they're smart. And as a patient, you have the right to a doctor who listens to you, and who is honest with you and doesn't lie about what care you're receiving. And never let your doctor prescribe any medication for you if you don't know what it does.This.

    Almost 25 yrs ago a psychiatrist told me that I was making my then husband ill and that my emotional and physical exhaustion was laziness. 20 years later I finally gave in and saw another psychologist, who diagnosed my clinical depression, probably triggered by postpartum hormonal change.

    Lazy, indeed.

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  49. I'm so glad you found the right doctor. I have weight issues and I hate how overweight/obese people are treated. Like we're only that way because we're lazy. I work out at least 3 times a week (6 times when I have the time and no injuries) and all that does is help me keep from gaining more weight. I'm far from lazy. Also I've been reading books about how dieting just makes people fatter and how we should be in better touch with when we are actually hungry and full. Anyway, this is not about me. Second and third opinions are super-important; doctors are definitely not all geniuses.

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  50. Yup, I've had a lot of issues with doctors as well, it is dumbfounding how utterly careless some are and how they don't listen. The worst times though was when my newborn baby was sick, because the drs would ask us 'is this your first child?', and once we said yes, they'd immediately dismiss us as overly concerned first time parents. She nearly died simply because we were first time parents. I had to really push to get taken seriously, even after she started showing serious symptoms. The trick we found was to have my husband do most of the talking, it seems if the father is concerned, they take it seriously. If the mother is concerned it gets written off as hormones.

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  51. I'm fascinated by how different countries approach fibromyalgia, which I have. Here in Holland we still lean heavily towards the 'it's in your mind, somehow'. It's very rare to be prescribed heavy painkillers or other medication. I only 'self medicate' with magnesium citrate and melatonin (to get to sleep). Luckily, I'm one of the people who deal more with fatigued muscles than serious pain (although I am in a bit of pain, constantly...but I guess that becomes normal after a while). I also do think that the USA seems to be an over-medicated country. But maybe that's just because of all the TV ads we saw when we were there:).

    The issue of 'making it up' also fascinates me. Even though part of me believes I have a legit disease, another part of me also thinks that I could manage myself and my life better so I'd 'get over it'. This is further complicated by the fact that it turns out I do have some mental issues - an anxiety disorder - and when I have a really 'good' time where I can really relax and let go of stress...I DO feel a lot less sick. So in my case, I do think that those two might be related. Which of course still doesn't mean that I CHOSE to manifest mental symptoms in a physical way, or that I'm making up my very real physical fatigue and pain. I dunno. It's still complicated and I've had it for four years...

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  52. I've always gotten ragged on for being fat. Was fat since 4th grade (about the same time puberty kicked in)... was put on diets, never worked. Undiagnosed PCOS. I have hyperpigmentation in my arm pits/inner thighs and it's like a barometer of how my insulin resistance is doing. When it fades, my glucose levels are stable. I lost a lot of weight when I went paleo and exercised (walking every day and bike riding)... gained it all back when I started caregiving for my gramma and couldn't get out to exercise)

    About a year and a half ago, I had a breakdown. Had my mom cover for me with my kids and grandmother (she has Alzhiemer's, should have been hospitalized before I moved to be with her.) so I could walk down to mental health (which is pretty much down the street from me) ... walked there bawling my eyes out, managed to fake composure for when I talked to the front desk. I asked to be seen, front desk asked if I had a primary. At the time, no. My kids had their pediatrician but I hadn't gotten a primary, although I had made a call to a clinic in town, but that appointment was like 2 weeks away at the time.

    I told front desk as much; no primary but I had an appointment later in the month. Front desk at mental health told me I needed to go to THAT appointment first because the psychiatrist will work with my primary... what?

    Maybe I shouldn't have tried to compose myself. Maybe I should have looked the total wreck I felt. So I got turned away mid-crisis and told to go to my appointment at the clinic.

    Again, it was one of those very emotionally charged days for me. I knew I wanted help, I knew I was depressed, and I knew I can't fix me alone.

    I was fine until I was sitting in the exam room. Nurse came in, took vitals and asked why I was here. Told her I wanted anti-depressants or something to help me cope with my home situation. I'm in tears again, and trying not to make much sound because I fucking hate crying, most especially in front of others. Nurse asked about what was going on, and I filled her in.

    Out in the hall, I hear the doctor I talking really loud, about how she didn't care I was crying, if I were in crisis, I should be at mental health, not here. Oh, and did I know my insurance lapsed? She's not going to see me! She needs to get paid.

    Nurse came in again, told me that my insurance expired like 3 days before (end of the month) and I'd have to pay out of pocket. Okay, fine, whatever. I want help, end of story.

    Doctor comes in, asks me what's going on. I fill her in. She tells me she can't prescribe anything, I need a drug test first. What? For Lexapro? So I had to do a pee test (and charged $500) to be told I'm shit out of luck and need to hit the mental health clinic again, because if I wanted to address my weight, then I'm in the right place-- she can help me with that. Being a wreck of humanity, well that's just not her department.

    Fair enough, but still. I never went back to that doctor because I felt so worthless and helpless and it almost felt I was being mocked (which I probably wasn't, but in a hyper-emotional state, inflection and tone counts for a lot when dealing with people and that doctor SUCKED when it came to dealing with me) and the only compassion I found was from the two nurses who came in and spoke with me, one of which gave me a huge hug when I started crying more when I heard the doctor say she wasn't going to see me because I had no insurance.

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    1. Like I fucking wanted to be making a scene and draw attention to myself. Sorry, my pity parties are usually for one. I don't like sharing my Ben and Jerry's.

      The doctor did write me a "prescription"-- she used her prescription pad to write the mental health a little letter instructing them to give me the care I need.

      By the way, when one hands such a note to the front desk at mental health, the first thing out of the receptionist's mouth is, "We don't take these..."

      I had to get on county assistance to see a therapist. My very awesome therapist wrote a referral for me to see the psychiatrist.

      A couple of visits later, I was given some materials and books to read about my newly diagnosed condition, and for the most part I understand myself and my triggers better.


      My brother lost his life due to medical not-thinking-things-through (Note: aortic root transplant, when put in at age 12 will NOT work when subject is 18, and sure as hell won't last until subject is 25, as quoted by the cardiologist)

      Had an ex boyfriend who had constant abdominal pain. His doctor did blood work (for 5 years) and prescribed heavy pain meds for management. Pain got so bad, I took him to the ER. They found a huge gallstone about to rupture his gallbladder.

      Doctors are human, and some are great while others shouldn't be in the medical field to begin with.

      When my son was 2 days old, I asked the nurse if he was looking yellowish to her, because he seemed yellow to me. She asked me, "Why, are you LOOKING for him to have jaundice?"

      No, but I educated myself on what it looks like, so I wouldn't be ignorant but proactive should it happen. And guess what? He had jaundice. I specifically requested not to have that nurse again. I may not have gone to school for medical stuff, that doesn't mean I'm ignorant.

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    2. I have a friend who is a surgeon and GP, he says he's just about the only doctor that will actually touch his patients to see what is wrong with them instead of just doing blood work. He's caught so many simple little things that got worse solely because the other doctors wouldn't actually touch the patient's abdomen to feel if anything was swollen the first time.

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  53. I'm so glad this story has a happy ending. Here in the UK, I have a named GP at my surgery, but half the time I never actually manage to get an appointment to see her (it's pot luck; you call and frankly you're so lucky to GET an appointment, you just take whichever doctor they give you!). Only this week, I went to see a doctor (again, not my usual GP) and told him I had such a painful throat that I could barely eat. I also told him it's the sixth or seventh (if not eighth) sore throat I've had so far this year and that I'm concerned by the high frequency. I'm asthmatic and have long wondered if the inhalers I use are damaging my throat, since I'm on quite a high dose of steroids. He took the slightest look in my mouth and said: "You don't look infectious enough for me to give you anything" and just shrugged when I asked about the asthma connection.

    The thing is, I know doctors are stressed, overworked and all of those things, but if your job is to care for someone's health... I kind of expect you to do it well. Mistakes are human, we all make them, but when you're taking someone's life into your hands, that terrifies me.

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  54. I have to say how sorry I am that everything went so wrong in your search for care, and that you weren't believed. Or that you were just a fatty mcfatterson making excuses. I was treated that way too in the years leading up to my pcos diagnosis. Luckily I have a great doctor now who always believes what I am experiencing is real and deserves to be to be treated.

    I do have a story that looking back is both incredibly offensive, and really stupidly funny. I was going in to my fairly new to me gyno to be put on the pill. I was in a serious relationship, no marriage plans, and didn't want a kid. So, off I go to my appointment, exam is fine, bp slightly high, (due to nerves-my current doc always checks me at the beginning and end of an appointment) and the doctor sits down with me to say she can't put me on the pill because of the high blood pressure. I asked her to retest it, because I had never had it before, but she refused. I didn't fight her on it because I was young and felt intimidated, but I did ask what alternative bc methods she could recommend. Her recommendation was, I shit you not, to stop having sex. Even young me knew that was a quack thing to say! Later that month I got my pills at planned parenthood, and god bless em for it! Just don't have sex. What a stupid, stupid bit of medical "advice" that was! Luckily I knew enough to know that was some advanced level slut shaming, and never went back. And. 15 years later and I still don't have high blood pressure. ~fin~

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  55. I have hated going to doctors my whole life. I grew up in a military family, and military doctors, on the whole, are absolutely terrible (they almost ensured my mother being paralyzed. They were super focused on her blood pressure, and they didn't want to do anything about her crippling pain or her fucking breast cancer that had spread to and compromised her spine. They went to a civilian emergency clinic, despite being told by the military docs that they would do nothing; she was in emergency surgery that night. She now has an awesome team of civilian doctors taking care of her, and it looks like she will beat her stage four cancer.), and way focus on weight. And try to shame you into losing it. I have been fat my whole life (and guess what? I'm healthy. My blood pressure, sugar, ect is normal. My crippling depression is not caused by my weight.)

    I have a really great GP now, and have absolutely no problems going to see him. He really takes his job seriously, and seems to really care about his patients.

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  56. Seriously wow! Thank you for sharing this part of your life. I'm sure it will inspire many to actually participate and ask questions especially when it concerns their health. I certainly wi keep you in kind when I go to my check up.

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  57. I have mostly been very lucky with doctors, but I have had a few bad experiences. I started having really bad back pain when I was 7, my mum and dad were taking me to the GP at least once a month and kept being told (by the same doctor) that I was attention seeking. When I was 14, my dad's girlfriend noticed that my back muscles were massively overdeveloped on the left side of my spine, and barely existent on the right side. We go to the GP and show him that, he finally coincides that I have Scoliosis. When we see the spinal specialist he says that I have a big curvature which has been there for at least four years. Two years later he finds that I have a spinal defect at Lumbar vertebrae 4&5 which I was born with, which most likely was the reason for the pain

    Other bad experiences have been related to the pain meds I've needed for the last 5 years, until January last year I was like Jenny in that my disability was invisible, I was young and healthy looking and asking for opiate based drugs. So I got a lot of attitude from doctors I hadn't seen before, but once I went through my medical history they shut up and gave me my meds. Other than that I have been blessed with two excellent spinal surgeons who have done everything they could to fix my chronic back pain, several excellent GPs and a great Pain Specialist.

    To be honest the medical professionals I've had the most trouble with has been Physiotherapists and that's because mostly they have no clue how to deal with people who aren't going to get better. My chronic pain is likely to be lifelong, there is no known cure for the type of pain I have. Which means that what I need for physiotherapy is something that helps with the pain, but the physiotherapists are all focused on a long term solution to fix the pain which doesn't exist. Plus I make their numbers look bad because I can't be discharged. Last year I lucked out and had three excellent physios in a row, then I got the worse two ever. This year I have had one who was ok and two who were utterly crap. The bad ones have all got really focused on my legs because I'm in a wheelchair, except the reason I'm in a wheelchair is because the pain in my spine and pelvis makes weight-bearing excruciating it's not because I can't walk. Alas I can explain this until I am blue in the face, but they still focus on my legs and imply that I am lying about how much pain I am in. Never mind that if you have been in constant pain for five years that you learn coping mechanisms and are unlikely to sit there screaming and screwing your face up, although sometimes the pain is so bad that I do feel like doing that. I also hate having to rate my pain on a scale of one to ten because everyone is going to mean a different level of pain for each number plus what I thought was a ten five years ago is not the same as what I would rate a ten as now because my pain has got worse.

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  58. I have seizures as well. I was diagnosed when I was 8. At 22 I have finally gotten my license and have been driving alone for 2 weeks now. I haven't had a seizure in 3 years now. Hopefully this happens with you as well.

    This does cause my pregnancies to be high risk though and i'll have to switch meds if I want to have another, and probably can't breastfeed due to the medicine. But that's okay, i'm coming to terms with this.

    ReplyDelete
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  61. So...I'll leave this anon bc I'm a doctor.
    But damn...this shit sucks.

    I, like so many of you, have been through something similiar--misdiagnosed with a tumor on my brainstem. Nice. So I really do appreacite what all of you have been through. I do.

    But...I have to at least give some insight into the other side. I'm a family doctor, so --general practice, primary care. Where do I even start?

    While I applaud the Affordable Care Act, because everyone should have access to healthcare, it added about 50 MILLION patients to the US medical system, without adding ANY doctors. As in, I have more patients to see and manage every day, than I can possibly manage. Never mind that as a family doctor, I make the 3rd lowest salary out of medical specialties, but I most assuredly, paid the same tuition and have the same shitload of loans to repay.


    So, because there are more patients, and reimbursement for primary care is so shitty that I cannot afford to have the kind of office staff that would help me support the patient panel that I have, I am constantly playing catch up. Constantly.

    It is a neverending pile of paperwork, phone calls, emails, and then I get to actually see patients in the office and hospital.

    So when am I supposed to see my family?

    Or...read journals and attend conferences to stay up-to-date?

    Now...let me take a moment here to say--I am lucky to work in a University setting, so there are tons of educational opportunities for me, all the time. And I catch them. And my employer pays my dues to several professional organizations, which send me journals and emails with mecial updates--so I can squeeze in articles here and there. And I do.

    But when I am in the room with a patient, I try to be 100% present, try to hear them--really hear them and connect with them. I will admit when I don't know what is going on...because I have minimal ego (I think anyway).

    Because, in general, doctors are dicks. I mean--egotistical, condescending, paternalistic dickheads. I actually can't stand some of my partners because of how they treat patients. It is just gross.

    So, I have been oncall and awake for the last 24 hours and I get to go home soon. I saved someone's life tonight. That's pretty fucking awesome.

    There is a lot about my job that sucks asscheeks, but...there's a pretty great pay-off.
    So on behalf of dickhead doctors everywhere--I apologize to all of you who have had bad experiences. I encourage all of you to keep asking your questions and pushing your concerns, keep looking for a new doctor, until you get someone who listens and answers and makes sense. Patient self-advocacy is key. And it is often the difference in finding the right diagnosis.

    KCCO
    oh and PS--I ramble and misspell things when I'm post-call and tired, so don't hate.

    ReplyDelete
  62. Dr Red is an asshole on many different levels.I am a pharmacist and it kills me to see how bad some doctors are. Giving you tramadol with gabapentin was idiotic, if good doctor was so concerned about side effects, why not try, oh I don't know, one of many safer options available? Also, after starting you on gabapentin, which makes ppl gain weight like crazy, she told you obesity is your problem? WTF?!

    ReplyDelete
  63. There's a blog a fathealth.wordpress.com full of stories like this, of doctors treating fat people differently and the consequences. It's appalling!

    ReplyDelete

Say some stuff! If you can't think of anything to say, leave a link to a cute dog picture. I'm easy.