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    Community Voices

    Just Want To Vent

    Just need to vent because every thing makes me so freaking angry!! Even the littlest things! I know it's my anxiety, but I literally can not take it!! It makes me furious and I want to break things and scream!!!

    Example: I called my phsychiatrist this morning to reschedule an appt because it's a video visit and I don't like video visits. I like to go in person. They were rude as hell and are charging me $55 for rescheduling. Now I can't get in until October 31st! Hope I have enough meds until then!
    I mean, really???!!!!! $55 f'ing dollars?!!!

    I swear I'm so close to just saying F it and stop taking all these damn pills and be done with it all!!!

    Just pisses me off to no end!! I can't take it!

    Ok I'm done.....I guess. 🤬🤬🤬
    #Anxiety #Depression #Rage #meds #PTSD #Doctors #anger #SuicideSurvivor #Overit

    17 people are talking about this
    Eliott Hu

    What Makes a Great Doctor for a Patient With Cerebral Palsy

    Growing up, one of my favorite picture books was called “We’re All different, We’re All the Same.” It used popular Sesame Street characters to illustrate how our body parts differ even though we all have the same ones. This heavily boiled-down concept should be standard practice for doctors of cerebral palsy patients to understand. Essentially, because CP is such a spectrum disability, with no case like the next, I know my body better than any doctor ever will. It’s easy for a doctor who has spent years in their field to feel like they know best, lean too far into their expertise, and get lost in the technicalities. So many highly knowledgeable doctors walk into the room assuming they need to educate the patient from the ground up, and tell them how they’re feeling. Thank you, but I already know that I will have major leg spasms if I walk around all day. So often, doctors forget that their patients have lifelong and first-hand experience with cerebral palsy. A doctor’s appointment should be more of a conversation and less of a lecture, similar to the way the best teachers teach. They should work with the family as a team, not to cure CP but to help us enjoy our lives with it. They should treat patients like a canvas already with a base coat and work with them to find colors that complement the existing progress. The “solutions” are never cookie-cutter. Doctors need to find the most effective solutions given a patient’s existing circumstances. I’ve been told that I will always need to wear leg orthotics to correct my alignment and improve my gait (that’s unless new technologies are developed but that’s another story…). But now that I am in high school, and playing a lot of sports, the orthotics have become even more cumbersome to put on and take off. When the topic came up with my doctor, she was quick to understand my situation and prescribed foot inserts and plenty of stretching along with my sports. Having cerebral palsy, therapy will always be a part of my life. I have been in therapy since I was 9 months old. Now I’m phasing out some therapy in exchange for sports that I can enjoy alone or with others. But I will always love my therapists. There is one physical therapist from when I was much younger that I still hold near and dear to my heart. The 8-year-old me would go to her appointments every day over the summer, ever impatient, uncooperative, and very much annoying. Not a day went by without me becoming mischievous and distracted. She could easily have just shouted and demanded that I do the exercises, yet, she was always calm, fun, and devised new methods to get me engaged even when I kicked away her stretching positions. She was constantly positive and happy to see me, despite deep-down knowing that my focus would eventually give way to pesky antics. While holding my leg in a mild hamstring stretch, she would entertain my conversation about how Lionel Messi was the best player in the world. Eventually, I found out that she was fighting a battle with breast cancer, but you couldn’t tell because she remained perpetually enthusiastic and patient. She wasn’t stone-faced and ready to check me off her daily obligations. She saw me as a person more than patient, never failing to have me leave her appointment with a smile wider than I had entered with. I respect her deeply as a person and a professional, and with that foundation set, the older me is now much more cooperative. My point really is you could be the most experienced doctor out there, explaining the science behind pronation and its correlation to why my trunk is weak, but if I am functional without the aid of an array of technology, the conversation should halt there. Instead, it should shift to how I keep active, functional, and productive. Find out what the macro goal is and work your way down to develop individual goals. Don’t do it the other way around. Growing up, the perceived end goal was how well I could walk but actually, the best lesson I’ll ever learn from treatment is to walk with my head held high, to walk confidently. My gait will never become typical, but I’m not going to let that upset my participation in sports, interaction with friends, or alter what opportunities can interest me. I meet my physiatrist every year for a check-up, and every appointment starts with some sort of “What’s going on with your life? Tell me about soccer, tell me about school.” As I share my updates, together we draw out a plan. My doctor doesn’t need to explain that my body tires out quickly, rather she asks what sports I play, and what I do when I hang out with friends. There’s an equal amount of medical terminology as there is everyday banter (although as a teen who’s spent hundreds of hours with medical professionals, my knowledge of medical jargon is fairly astute). My mum’s already done the background research on what interventions we might try and then we ask for my doctor’s professional opinion. She’s also quick to ask my opinion. We discuss together. Really, it’s very fruitful. No one with CP needs to be taught about our CP because that is impossible. Physically, I might be atypical, but at its core, I’m a run-of-the-mill teen and that should be the starting point for every doctor out there. No doctor can make me any more normal than I already am. Having CP doesn’t make me any less normal than any other teenager. What they need to do is guide me to reach my full potential. As Sesame Street reminds us, “We’re all different, we’re all the same.”

    Community Voices

    Trying to get PCOS treated

    So after assuming my PCOS was better after significant weight loss I quit my birth control pills… and finding I was wrong I tried to go back on them. But my body wouldn’t let me get on them. I kept getting a period every other week. So I never got through a pack. So I called my doctor for a new birth control prescription. She took forever and kept asking, “why don’t you see your gyno?”
    Ummm… yea about that…

    My gyno diagnosed me with hypothyroidism when it turns out I had thyroiditis from COVID. It went away. But when she diagnosed me she refused to let me see an endocrinologist claiming falsely that the endo would only see me if I had an autoimmune disease and the she was not going to check for me. Yea it was bull. The endo saw me. But after prescribing hormone treatment my thyroid fixed itself (before taking the meds) and has not malfunctioned since.

    So FINALLY after 2 weeks of talking this out my doctor prescribed me a different birth control. I also start EMDR therapy for my CPTSD 2 sessions from now. And have finally scheduled surgery for my ripped stretched ear. Yep I had 1 inch stretched ears. But one of my earlobes was always oddly shaped. The fat was on the sides and not so much the bottom. The 1 inch truly was glass and too heavy for the misshapen ear to hold so it spontaneously just tore. Not in half mind you but the scar make it appear torn in half. It was close. My other ear had no problems but what you do to one you must do to the other. So I’m having them both fixed. I’ve excepted my dream of big stretched is over and I’ve accepted that. It is what it is. I gave it my best shot. If I could have “normal” sized pierced ears at this point I’d be happy. Which I can do after healing from surgery.

    #earloberepair #CPTSD #PTSD #Trauma #Abuse #PolycysticOvarySyndrome #Doctors #emdr

    1 person is talking about this
    Community Voices

    Gotta catch ‘em all

    The last few weeks have been particularly hard on me.

    Mentally, I’m mostly okay. Physically, I’m not. And that’s caused me to question a lot of things, wonder how it got to this point, increasing the severity of incidents where I won’t take painkillers.

    I’m being referred to cardiology for a tilt table test.

    In April, I was told I had low blood pressure but they didn’t seem too worried. At the end of May after worsening lightheadedness, I was told the same, and I was basically just told just to eat more and take iron supplements. And then last week, I went back again.

    I initially made the appointment for something else a month before (I had to wait for a month), but then the lightheadedness got worse, so I told them about it again. I told them I had taken iron supplements, I was eating healthier than ever, I was staying hydrated, I was staying active, I was just really doing all the right things. And again it was low.

    They’ve diagnosed me with postural hypotension in the meantime and told me to try compression socks for a week, and then if that didn’t work to call them and they’d refer me. So here we are. I get to have a blood test in September while I wait to be seen.

    My sinus issues had a major flare up. I was so miserable with it that I sent a email basically begging them to give me an appointment (I was referred back in February but waiting list is apparently a year) because it was beginning to affect my mental health, and I get to see them in October.

    It’s affected my hearing, so I had to chase up my ENT appointment. I hope it is just the sinus issues causing it, and not a third relapse of my ear problem, especially as everything seemed perfect last time I saw them. It would be nice to celebrate the first winter in 11 years without an ear infection.

    And then of course, my referral for heartburn/ acid reflux. I see the doctors for a one-month review, which will end in the referral they wanted to do (because I had suffered for at least 5 years w/out diagnostics) but held off on. The medication they put me on has somewhat helped, but I’m still having to take gaviscon most days.

    Finally, the chronic pain. It’s been difficult these past two days, and after (stupidly) lifting a sofa up because the cat pushed her toy under it (and then she herself went under it so I had to call my sister because I physically couldn’t lift it for much longer), it’s been worse. I still forget that I’m not really supposed to do things like that, and I always pay the price (pun not intended, but yeah cause volatarol is expensive).

    I’m just really very tired. I remind myself it could be worse, which is probably what has helped me stay positive and mentally mostly okay, but sometimes it gets to me. Particularly when it’s yet another tablet added to my daily medication. It makes me tired, and I think “it only gets worse as I get older”. I want to stop them, but I know I can’t. I ended up in hospital the last two times I did.

    Or another time it bothers me is when everything is getting worse/ is bad/ is happening all at the same time. This post doesn’t even cover all of it, but at this point I’m too tired to write anymore. Speaking of tired, I’ve only had 5 hours sleep each day for the last 3 days. I wake up early and then typically can’t get back to sleep because of pain and insomnia :))

    #ChronicPain #Depression #GastroesophagealRefluxDisease #Heartburn #AcidReflux #BloodPressure #Lowbloodpressure #PosturalHypotension #Hospital #DoctorsAppointments #Doctors #Sinus #HearingLoss #ent #cardiology #Hearing #Medication #MentalHealth #Pain #BackPain #Insomnia #Painsomnia

    2 people are talking about this
    Jill Alexandra

    In Defense of Just Ordering the Damn Tests

    Horses, not zebras. It’s an expression hammered into medical students that when you hear hoof beats (a patient’s symptoms) you should think horses (common conditions) not zebras (less common, more difficult to discover conditions). But how are they ever going to spot the zebras if they don’t even bother to look? Have you ever wished that your doctor would just order tests, if for no other reason than to rule out something? If so, you need to know these two words: differential diagnosis. It means making a diagnosis by ruling out the other things that could be causing the patient’s issues. Many conditions don’t have a specific test that “proves” they are the problem – but other conditions with similar symptoms can be ruled out with testing and evaluation, leaving the most likely culprit as the diagnosis. It’s a critical part of healthcare and diagnosis, but many doctors don’t put in the time and effort it takes to truly get to an answer – or at least as close as possible. When I was 20, I saw a doctor because I was increasingly having strong palpitations and the feeling that my heart was racing for no reason. He did a 30-second EKG, took one look at it, and said: “You’re fine. It’s just anxiety – go home and breathe in a paper bag like they do in the movies.” Yes, he actually said that. But I was young and I believed him – I was mortified that I had wasted this doctor’s time with my “mental problem.” I swore never to go to a doctor for a physical complaint ever again. Fast forward 10 years, and I had two grand-mal (tonic-clonic) seizures out of nowhere, with no history of them. I was on an antidepressant that had a small risk of seizures and, though I had been on it for years with no problem, I assumed that was the cause (because my mental illness is the sole cause of all my problems of course) – so my psychiatrist and I took me off that medication. But the seizures continued, and after two more I had to see a neurologist. She did an EEG, which will often show normal brain wave patterns unless someone is actively having a seizure, thus unsurprisingly came out normal, and she ordered an MRI which showed no tumors as a cause. She sent me on my way, feeling like they probably were just “spells” (passing out) – despite the fact I hit the ground so hard I broke teeth, got concussions, and had witnesses who said they were seizures. Again, I trusted the “professional” that they “probably won’t happen anymore.” When they happened two or three more times I returned to her, and she did the exact same tests, which of course were fine, and nothing more. At this point you would think my neurologist – not having found anything neurological – would at least recommend I see a cardiologist, as heart problems can cause loss of consciousness for various reasons. That’s not what she did. Instead, she chose to say the following: “Yeah, I think really it’s just your anxiety – if you learn to calm down, you’ll be fine.” She really said that, in all seriousness, to my face. Now, the rational part of me knew that was absurd, and when I later told it to my psychiatrist, he said, “Well, that’s clearly not right,” but the emotional part of me that wanted to trust and respect this trained professional just smiled and said “OK.” That was it – just “calm down.” Again, I was embarrassed I had “wasted a doctor’s time” with my histrionics. Luckily I have a great psychiatrist I can confide in, so I called him up and asked him “Am I being hypochondriacal to see a cardiologist just to be sure?” to which he replied, “Absolutely not, that’s the right move, I fully support that,” and he gave me a referral to the cardiologist who would radically change my life. I was going there to rule out any cardiac cause for my seizures – I wasn’t even going to mention the heart issues that had continued to plague me for the last 10 years, causing me to give up a lifetime of dancing, and interfering in my ability to function day to day. Come on — after I was told to breathe in a bag because it was just my anxiety, no way in hell I was going to endure that humiliation again. The cardiologist walked in, I told him about the seizures, and was fully prepared for the “all in your head” speech. But something funny happened – he kept talking to me. He kept getting to know me and asking me questions. Eventually, I had to confess I did have a little “cardiac encounter” 10 years before, but assured him it was just my anxiety… apparently. I told him I understood that anxiety can cause you to have palpitations and all that, but he wasn’t focused on my anxiety – he was focused on getting to the truth. And the truth was more than I ever expected. We talked about me, my life, and my medical history for half an hour. He never rushed me, never cut me off, and genuinely seemed engaged in getting to know and understand me. After he felt he had enough background, he listened to my heart, and immediately asked me, “Has anyone ever diagnosed you with mitral valve prolapse (MVP)?” – which I had never heard of, so of course, I said “no.” He seemed shocked, and rightfully so, as all it took was a simple “test” (listening to the patient’s heart with a stethoscope for 5 seconds) to discover that I had it. In 5 seconds he had already found something physically wrong with me – using the most basic medical training – that no one else had bothered to check. But finding I had MVP was just the beginning. He ordered multiple sets of lab work, an echocardiogram, and a follow-up appointment in two weeks when all the results would be back. The echo confirmed the MVP, but that wasn’t enough. It didn’t explain the things I had told him I felt regarding my heart — things I was brainwashed to believe were anxiety, and in fact tried to convince him were not worth bothering to worry about because it was “just my anxiety, I’m sure.” I assumed we were done – but he was just getting started. He wanted to see what my heart was up to day to day over time, so he put me on an event monitor. Like a tiny portable EKG, there were three wires stuck to my chest that I changed each night, connected to a small battery pack. I had a button I could push if something happened, including strong palpitation and racing heart, not just if I had a seizure, which triggered a marker, and the data wirelessly synced to his office. I wore the device for a month before returning for the follow-up. Again, I was fully prepared to hear that everything was fine. I was already embarrassed that he had me go through all this fancy extensive testing for nothing. So when he walked I took a deep breath… and then everything changed. Every time I thought I was having what are called PVCs (the sense of a ‘skipped beat’), it wasn’t in my head – it was truly happening on a constant basis, and he had the chart to show me. I couldn’t believe it, I wasn’t just being dramatic. Well, my disbelief was about to skyrocket. Offhand I said, “I wish that explained why it always feels like it’s going fast,” and without hesitation, he said, “That’s actually called inappropriate sinus tachycardia (IST), but there are medications we can give you to help treat it, and help you feel better.” I stared like a deer in headlights, completely in shock – and then I cried. The only thing I could think to say was, “So you mean I’m not ‘crazy?” And to his credit, he kept a straight face and said, “No, you’re not crazy at all,” and gave me a hug. It was real, it was all real the whole time – but no one had bothered to do enough testing and investigating to find out that I had an actual medical condition. No one wanted to work that hard. No one bothered to do more than the bare minimum of testing before taking the easy way out by blaming any and everything on my anxiety! He put me on medication and personally called after a week on it to check how I was doing. My panic attacks were almost non-existent, I fell asleep easier, and I could clean and garden and shop without feeling like I was having a heart attack. I was doing better than I knew I could be. All because he cared enough to keep looking, and not dismiss me as being “just mental.” He took the time to order the damn tests, and he took the time to keep going when one set of tests wasn’t enough. He couldn’t answer the question of why I had those seizures, but he could guarantee the reasons that were not causing them. He went so far as to arrange for me to have a three-year cardiac monitor implanted that would record my heart activity if I had another seizure. He walked me over to the scheduling department and told them to find a free spot ASAP. He was determined to rule out any cardiac cause, and literally went out of his way to make sure it happened. Less than a year after it was implanted, I had seven seizures in 16 hours and was admitted to the ER and neuro unit of the hospital. I remember him walking into my room, because I couldn’t believe he even knew I was there yet. I had only been there half a day, but he had already pulled up all the telemetry and spent a long time looking through it so that he could say with certainty that my heart wasn’t the cause – and personally came to tell me as soon as he could, so it would be one less thing for me to worry about. Without that implant, we still wouldn’t know for sure what my heart was doing during a seizure. But he did the damn tests. He did the damn work. He just freaking cared. So simple but so powerful. When a doctor cares, they don’t give up. They think, they try, they evaluate, they listen, they learn, and they don’t give up on you. Patients aren’t being dramatic, paranoid, or histrionic to want you to run tests to rule out possibilities – they are doing exactly what you should be doing; seeking the differential diagnoses by eliminating what can be eliminated — by testing and evaluating the results to narrow down the possibilities. Horses, not zebras doesn’t mean you don’t check. It means you don’t jump to conclusions. You run the obvious tests, and if those don’t give you answers, you keep checking – you don’t just stop after you hear the hoofbeats and decide it’s a horse. You check to be sure. If you aren’t willing to order the tests and put in the effort, you’ll have a zebra right in your face and never know it – because you didn’t bother to look.

    Community Voices

    Note to doctors: Hello? Anybody there?

    <p>Note to doctors: Hello? Anybody there?</p>
    14 people are talking about this
    Community Voices

    Undiagnosed chronic illness and I need a wheelchair

    <p>Undiagnosed <a href=" illness" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce6f00553f33fe98fe39" data-name="chronic illness" title="chronic illness" target="_blank">chronic illness</a> and I need a wheelchair</p>
    18 people are talking about this
    Community Voices

    Has anyone ever had this horrible experience I’m having with doctors that won’t take patients that are treatment-resistant with major depression?

    I’m fine and better without an antidepressant or all of the combos of antidepressants that I had tried.
    I can’t even safely take antidepressants because they actually made me actively suicidal in my early 40’s.

    But, I still have needed prescription sleeping pills to sleep even for 4 hours and I still have needed anxiety medication especially now while I watch my cat daughter, my only child, suffering most days and deteriorating from her very old age and her medication side effects for her scary hyperthyroid condition.

    But, I can’t get a new doctor to take me as a patient, and obviously, I do need one still, but the doctor I have been going to repeatedly and unmistakably treats me horrible -demeaning-laughing in my face about my disabilities, so I obviously can’t put myself through that with him any longer.

    And to make matters even worse - when my current sleeping pill and anxiety pill prescriptions run out, I have had fear instilled in me by multiple doctors and my pharmacist that I will experience unbearable withdrawal symptoms for a very long time since they are both controlled substances that I was put on since 2019. And not one doctor wants to do their job and even monitor me as I come off of these medications. #Doctors #Psychiatrists #MedicalProfessionals #TreatmentresistantDepression #CheckInWithMe #MajorDepression #ChronicDepression #MajorDepressiveDisorder #Insomnia #Anxiety

    5 people are talking about this
    Community Voices

    Wellness Wednesday: Patient Rights

    <p>Wellness Wednesday: Patient Rights</p>
    Community Voices

    Serious Question

    So I have been learning about the brain and nervous systems in my anatomy class. There is a small part of the brain called the Medulla Oblongota. It is responsible for controlling and maintaining a healthy and normal heart rate, as well as other autonomic functions. I instantly looked up POTS and studies on the Medulla Oblongata. And there was absolutely NOTHING! There’s no way that I am the first person to have this thought. Has anyone had a doctor look into this? Any doctors here, please look into this. Is it a malformation? Is the electrical activity different?
    #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #POTS #LivingWithPOTS #ChronicIlless #ChronicIllness #Doctors #MightyQuestions

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