Pulmonary Embolism

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    Community Voices

    Scan fears

    #SexualTrauma . I have recently suffered a pulmonary embolism, blood clots in my lungs. As part of the follow up I have to have a transvaginal scan. I know it’s important, but I am terrified about the memories, flashbacks, dissociation etc. My abuse started at the age of about 5 with things being pushed inside me before it escalated over time.

    I have avoided smear tests and sex for a long time, even though I’m married, but the thought of this scan, of the position I will have to lie in and what they will push inside me is really scary.

    I don’t have anyone one to come with me, I wouldn’t want anyone to be there while those parts of my body are exposed. I will probably be fine during it, but react when I get home, when I’m completely alone.

    I also have bipolar disorder and can be prone to harming when distressed. I wondered about letting my psychiatrist know to see if he could just talk me through how to get through this, but he is difficult to get in touch with and I done have an appointment for another 2 months.

    I wondered about writing it down and giving it to the radiographer person. I’m not sure I can find the words to say it out loud.

    I would welcome any suggestions, it’s important that I do this and it could be the difference between life and death if I get another embolism.

    #CPTSD #Bipolar2Disorder

    13 people are talking about this
    Community Voices
    Community Voices

    #Selfharm relapse
    (warning - self harm and suicidal thoughts)

    I was able to manage to go for three years from early 2018 without wilfully hurting myself physically. I abstained and somehow managed to avoid succumbing to the urges to cut myself and hurt myself in general.
    I promised my partner back then that I would not.

    I went on to suffer a pulmonary embolism a few months later but get married to my partner a year later after a lot of melodrama from the families. Through the rough patches of marriage, the pandemic, major mood swings and self harm triggers right in front of me often (having to deal with my partner's) I managed to stay 'sober' so to speak.

    Up until a few days ago when everything got to the point that I could not take it anymore. My family were being terrible to both my partner and myself, the amount of gaslighting could have blown up the house and it turned out that I was weaker than I thought.

    I succumbed to the urge.

    My mom kept drilling the point that my partner was bad for me, that we were molly coddling each other, that I do not have ADHD and should focus on doing my work efficiently, that and that the only reason I am still stuck depressed is because I say that I have depression and that I should just think positive.

    I have never indulged in any substances and do not mean any disrespect to people who have had to grapple with substance abuse, but I really feel like an addict who has relapsed.

    I did it once and then again and then again and I've been doing it since. I spoke to my therapist about it, they gave me some ideas to cope, I tried them, pushed them to their limits and then just started cutting again.
    I had a suicidal episode the other night and despite formulating multiple plans on how to make all this stop I somehow managed to lock the knife in a drawer and exhaust myself crying on the floor.
    I've been incapable of focusing on anything since.
    My partner thankfully came and picked me up from my place the moment my therapist informed them of what happened that night.

    I know I should be relieved that I'm away from home right now, but I feel hollow, I feel guilty for making a fuss and worrying them, I feel guilty for not being able to even sign-in to work since Wednesday, pretending that I was sick.

    I'm just so exhausted. Part of me doesn't want to go on, but part of me doesn't want to die.

    3 people are talking about this

    CLOVES Syndrome: Celebrating Rare Disease Day

    I was an infant when my mom began to worry about the two words we would come to dread the most: pulmonary embolism. As she researched my diagnosis, Klippel-Trenaunay syndrome (KTS), she noticed those two words often appeared in the literature. “Will we need to watch for blood clots?” my mom asked my doctors in Boston and Dallas. These specialists, some of whom were known for treating KTS and would later develop CLOVES syndrome, said no. At the time, they thought a pulmonary embolism was only a dreaded complication for those with KTS in their legs. I was 11 when I proved the specialists wrong. After a few days in the hospital for uncontrollable hand pain, I began wheezing. The doctors worked through a long list of potential causes, checking for complications like asthma and pneumonia. But as my 02 sats continued to drop, one brave doctor finally suggested the cause that everyone else dismissed. “What if it’s a pulmonary embolism?” he asked. At the time, the suggestion seemed ridiculous. Why would I, an 11-year-old with KTS in my upper body, have a pulmonary embolism? The suggestion seemed so unlikely that my insurance company initially denied checking for a PE. But after another week of decreasing 02 sats and pressure in my chest, the brave doctor spoke up again. When my insurance company finally approved the scan, we learned that the unlikely complication was no longer just two dreaded words. It was now part of my medical history. I was 17 when I had yet another pulmonary embolism. I’ll never forget that nightmarish day, a day filled with dread and distress. A cacophony of wheezing accompanied me as I stepped through the ER doors. “My daughter can’t breathe and may have a pulmonary embolism,” my mom explained to the women sitting at the front desk. “She’s been off of her blood thinner for a couple of weeks.” I’ll never forget what happened next. I’m sure you’re hoping that the women sprung into action, hooking me up to a blood pressure cuff or checking my 02 sats. But that isn’t what happened. Instead, one of the women scoffed in disbelief. At the time, a pulmonary embolism seemed laughable to the woman. “Why would she be on blood thinner?” the woman begrudgingly asked, as if she had already dismissed this “unlikely” complication. My mom quickly and irritably replied, “Because she has a history of a pulmonary embolism!” Just a few hours later, the “unlikely” cause was confirmed. Those two dreaded words were once again inscribed into my medical history. I’m 25 now, and my medical history continues to tell the story of a rare disease patient enduring the unforeseen and unlikely. This story is ever-evolving, yet it also contains repeated themes, themes like those two dreaded words. But it isn’t those two words that really stand out to me today. No, it’s the three little words I used again and again as I shared my story with you: at the time. On Rare Disease Day, it’s those three little words I’m calling our attention to. Those three little words — at the time — allude to progress. They prompt us to recognize that something has shifted, something is no longer as it once was. Those three little words not only set the scene for stories of where we’ve been, but they also call us to celebrate how far we’ve come since. They lead us to remember what it took to get to where we are now. For myself and many other rare disease patients, we’ve watched doctors learn to manage our symptoms through trial and error. We’ve watched researchers make progress in identifying the genetic mutations that can cause these rare diseases. We’ve watched specialists creatively think outside of the box as they’ve journeyed with us through tragedy and triumph. Some of us have even watched our diagnoses shift as new syndromes, such as CLOVES syndrome, have been described. And many of us have not only watched research development take place, but we’ve participated in the very research that has allowed us to say, “At the time we thought… but now we know…” Rare Disease Day gives us a unique opportunity to both celebrate and learn. This day inspires us to honor how far the rare disease community has come; however, it also reminds us that there is still substantial work to do. Whether you’re a patient, a doctor or a friend to someone in either group, there’s work you can do as well. On Rare Disease Day, you, too, can join in the celebration, commemorating the progress that has been made. Nevertheless, I want to also challenge you to learn about where we’ve been and how far we still have to go. Read diverse perspectives. Hear the true stories that spring from someone’s challenging medical history. Listen to a patient navigating the “unlikely.” Ask or research how you can help raise awareness. Amplify the voices and works of those with rare diseases. Join us as we not only celebrate how far we’ve come but also remember what it took to get here, to reach those monumental moments where we could finally say, “But now we know…” Follow this journey on Growing in the Groaning.

    Living With Pain and a Post Thrombotic Syndrome After Blood Clots

    I’ve worked so hard over the past few years as an advocate for fellow blood clot survivors to help them navigate their personal health and recovery journey. What I haven’t done is shared enough about my personal experience with chronic pain, including post thrombotic syndrome, and disability following my battles with blood clots. First of all, let’s go over what blood clots are. Blood clotting normally helps prevent us from bleeding too much. A blood clot, however, forms when your blood thickens too much. Blood clots that form in the veins are known as deep vein thrombosis. If the blood clot breaks off and travels, it’s known as an embolus. If the embolus travels to the lungs, it’s known as a pulmonary embolism. It’s important that we all discuss our individual risk factors and the common symptoms of blood clots with our doctors. If you are concerned you might have a blood clot, get immediate medical attention. Blood clots are a leading cause of death and disability worldwide and the third common cause of vascular death after heart attack and stroke. In the U.S., many blood clot survivors will develop post thrombotic syndrome, which is often a long-term complication that can increase your likelihood of being granted disability. If you suspect you might have post thrombotic syndrome, consult with a knowledgeable vascular specialist. I was first diagnosed with blood clots in March of 2013, when I was 11 weeks pregnant with my son. The blood clots were pretty extensive, going from the right side of my pelvis across to the left side and then going down my left leg and behind my knee. I had been experiencing lower back and left hip pain for at least a couple of months, believing it was because of the pregnancy, I brushed it off. The day I was diagnosed I was in excruciating pain and could barely stand up, let alone walk. I was given no pain medication when I was released from the hospital and was told I could return to work in a couple of days. There was no way I felt comfortable returning to work, as I was still in excruciating pain and could barely walk. My obstetrician decided to put me on strict bed rest for the duration of my pregnancy. A week after my diagnosis, my husband took me back to the emergency room because I was in even more pain than I had been. The doctors in the ER were so understanding and kind and prescribed me a pain medication that they said would not harm my unborn baby. It didn’t alleviate all of the pain, but it helped me handle it better. Several weeks later, my husband and I were excited to be having a more intensive ultrasound for the 20th week of my pregnancy. While the sonographer was checking the baby’s measurements she was making small talk to help keep us calm. She asked what brought us to a high risk obstetrician, so I started telling her about my blood clot diagnosis and my experience. Things immediately spiraled downhill as she objected and dismissed my concerns about the pain I’ve been dealing with, because she’d experienced a superficial blood clot in her lower leg the previous year and she adamantly insisted that blood clots don’t cause pain and I was faking. She had the audacity to bring one of her coworkers in to back her assault on my symptoms, which completely shocked and overwhelmed me. I left their office thrilled at finding out we were having a baby boy, yet completely crushed that a complete stranger basically called me a fake and a liar. Fast forward to March 2014, which was when a knowledgeable interventional radiologist diagnosed me with May Thurner syndrome. That explained a lot of what was contributing to my ongoing pain. May Thurner syndrome is the compression of the left iliac vein by the overlying right iliac artery. I had to have clot busting surgery consisting of thrombolysis with tPA and mechanical thrombectomy followed by a lot of painful ballooning of several veins to help open them up. I also had stents placed in the iliac veins to help improve the blood flow. The knowledgeable specialist made a tremendous difference in my quality of life, because not only did he improve my health, but he understood what I was going through and he confirmed that my pain was real. Several months later, the vascular specialist I’d been seeing diagnosed me with post thrombotic syndrome. I’d been suffering from ongoing pain even though he’d removed the blood clots and improved the blood flow in my lower body. I was constantly in pain and both of my legs would swell whenever I was on my feet. I was incredibly uncomfortable sitting in a normal position, even for a short time. I also couldn’t wear anything on my legs that had an inner seam going down the left leg. I can’t lay down with my left leg laying flat, as it increases my pain. I can’t stand or sit upright for long periods of time. I’m most comfortable laying down with my legs elevated, but even then I’m still in pain. I barely sleep most nights, often waking up due to pain, if I’m actually able to fall asleep. Since my blood clots, I have not had a pain-free day, even with medication. I slipped into a deep depression. Throughout the last seven years since my blood clots were diagnosed, I’ve had a few medical professionals dismiss my pain issues. Thankfully, I’ve found even more medical professionals that believe me, including a few that completely understand the pain I have and what contributes to it. In January of 2017, I was awarded disability, due to the pain and mobility issues I’ve experienced since my blood clots. I’ve been working with a knowledgeable pain management specialist who has been helping me with controlling my pain issues. I work with a knowledgeable hematologist to keep my risk factors for developing blood clots under control. I’ve also been working with a therapist to help me deal with my anxiety and depression issues I’ve been battling since having blood clots and pain issues. If you’re dealing with chronic pain issues, please know there is support for you out there. If you’re battling with blood clots or post thrombotic syndrome, know that I understand what you’re going through and there’s support for you. Talking about the pain and how it affects all aspects of your life is so incredibly important. Don’t hold it in and don’t let others dismiss it or you. Your pain matters, and so do you. Follow this journey on MT Survivor Mama

    Community Voices

    # Angina or a Pulmonary Embolism (blood clots)

    So I've been experiencing a tightness in my chest after carrying my groceries into my apartment or after having a shower. I mentioned this to my doctor and she sent me off to have blood tests. (I have had a pulmonary embolism or a blood clot near my lungs before, Dec 2018). Sure enough the tests showed evidence of clotting, only marginal though. So I was sent off to the Emergency Department of my local hospital w the blood test results. It took about six attempts and 40 minutes to find a vein for a cannula, btw. A comparative blood test was undertaken but there was no indication of blood clotting. Coincidentally I had a cardiology review at a larger hospital in Brisbane yesterday. (I have cardiomyopathy). My cardiologist isn't convinced by the diagnosis of angina that was given to me by the doctor at the Emergency Department last week. He hasn't ruled out a pulmonary embolism. So he's arranging a CT scan and a stress test on a treadmill. Meanwhile he's prescribed a spray in case I experience any more discomfort. Meanwhile I am back at the hospital in Brisbane on Thursday to see my oncologist for my quarterly review regarding me being in remission from non Hodgkin's Lymphoma. Plus to have Rituximab intravenously.
    Next Tuesday I'm back at my therapist's for my second session. It never stops, like a mechanical hamster on its' wheel

    1 person is talking about this
    Community Voices

    Can’t breathe

    I have severe allergies. Cross pollination issue. Oral allergies issues. Recently since march i have been fighting for air. Covid test neg. pulmonary embolism negative, ekg normal. 2 chest xrays , A round of prednisone. No answer. Have to see a pulmonologist after the allergist and primary dr had no answers. Was treated like shit at a er claiming i had anxiety. I think i would know. I’m not anxious i know that feeling. It’s making my job hard ( i work in healthcare) i have EDS also. They think i May be allergic to exercise. Anything that raises my heart rate. Ugh. I’m super frustrated. It’s hard enough having chonic pain from Eds. I’m not crazy. I need answers. I need something to work out for me. I’m battling enough as it is. My son (12) was finally confirmed ASD. 12 years it took. A messed up body. CFS , EDS. I am doing what i can to go forward but this is really hard. Really disappointing. Ugh
    #EDS #CFS #allergictolife #Undiagnosed

    2 people are talking about this
    Community Voices

    Book recommendations and a question!

    Trigger warning/trauma, mental health





    I have been looking for books about fibromyalgia. Written by people...who have fibromyalgia. That aren’t outdated, and aren’t propagating a diet or lifestyle cure. I have been writing poetry and essays all my life and my partner is telling me that this is a good time to bite the bullet and write a fucking memoir.

    So here’s the deal.

    I have survived a lot. Domestic and childhood abuse, neglect and trauma, an eating disorder, being orphaned due to drug addiction, multiple suicide attempts, poverty, homelessness, being wheelchair bound, multiple assaults of all shape and size and style, teenage pregnancy, multiple near-lethal infections that led to hospital stays and weeks or months of treatment, hyperemesis gavardium, pulmonary embolism, anemia... My love life has been a ball of chaos and awful and awesome... and now I am living with fibromyalgia and multiple mental health diagnosis as a queer, gender non conforming, intersectional feminist and UU pagan with a beautiful weird and queer family and lots of pets.

    So. Yes, I’m a goddamn cheetah, as Glennon Doyle would say.

    But would you read that? Is there a market for my brand of awesome? I want to talk about what my life looks like. What I’ve learned about healing from my trauma but not how to fix it for anyone else. What I wish I had known starting out with my kids, but am glad I didn’t because I fucked it up in such a way that they are just amazeballs.

    I started something, just to test the waters and I can’t decide if I love it or hate it. But I’m pretty sure I’m supposed to hate the first 20 drafts, right?

    I’m legitimately not trying to inflate my ego. But I think I need some people to push me one way or the other here, because the voice of doubt is loud these days... and I’m pretty sure the reason there aren’t enough books written by people with chronic illnesses is that we are too damn tired. #Trauma #Fibromyalgia #MentalHealth #memoir

    3 people are talking about this
    Jackie Blair

    I'm a Symptomatic Nurse Who Was Refused COVID-19 Testing

    As a nurse, the past few weeks have been terrifying. COVID-19 is sweeping the country. The first week that cases started to appear in the United States, my county, including the medical professionals, were mostly unfazed. This was the most dangerous reaction that any of us could have had. As more and more cases appeared, New York State slowly became the most dangerous place to be in the country; my upstate county was still woefully behind. I work in two healthcare settings: long-term care and an outpatient office setting. As the news became more worrisome, I watched, unsure what to think given the location of our county. Some nurses and doctors were starting to become concerned, but others remained unfazed. Many were researching how to prepare in the outpatient offices and in the long-term care facilities. Some upper management scoffed and turned down employees who requested to be measured for N-95 masks. The mixed responses of those around us left us nurses in the middle, unable to prepare. Was COVID-19 something that was serious for us locally? Should I be preparing if some of the providers I worked for weren’t even mildly concerned? What should I do with regards to caring for my medically frail patients in long-term care? Should I wear gloves and masks for something as simple as feeding them dinner or administering oral medications? Every single day in outpatient care the rules are changing: what personal protective equipment to wear, what questions to ask people, who can test patients, and what the parameters for testing are. It’s all changing so fast, most of us don’t know if what we’re doing is correct per our company’s policy. Then it happened: I was unknowingly symptomatic. Last week, I had a follow up with my primary care provider. Although I was there for an unrelated issue, I informed my provider that I’d been having trouble with my asthma lately. Normally my asthma is pretty mild, but for about a week and a half, something as simple as walking up half a flight of stairs would leave me winded. My vitals revealed I had an elevated heart rate as well. My provider ran some tests for me. On that day, I was working in my provider’s outpatient office. For most of my shift, I was working on patient phone calls (mostly sitting), and had minimal patient contact. Something as simple as talking too much left me short of breath. An hour before my shift was supposed to be over, my doctor gave me the results in his office. The test results could only confirm that I had some type of infection. It wasn’t influenza or any other respiratory illness on the respiratory panel that was run; a pulmonary embolism was also ruled out. I was moved into an empty patient room. No one but my doctor came in; my isolation had officially begun. My provider made some calls in order to find out the process for getting me tested for COVID-19 within his network. I was left in the room alone. Through the door I could hear workers, who had nothing to do with my care, discussing me and my medical information. I was trying my best to stay calm while I waited. However, I was overwhelmed; it all happened so fast. I was crying in an exam room, just trying to wrap my head around the possibility of what was going on. Outside of my fear for myself, my mind began to race to all of the people I had been in contact with in the past week. There was a knock at the door, and my provider came back in. He was given three different answers by three different people, and the final conclusion was this: Despite the research behind the importance of widespread testing, in our county we are only testing patients in critical care that are being admitted to the hospital. I was told to self-quarantine at home, due to being symptomatic, starting immediately after having a chest x-ray taken. My doctor had already informed infection control for the medical group. Before I got home, my phone had already rung several times. My supervisor within this system was trying to reassure me. During this same phone call, I learned that the office manager from my primary care provider’s office had broken HIPAA guidelines and used her position to share my information — at this point still an unsubstantiated diagnosis — with my supervisor, among others. At the time, I didn’t have room in my head to be angry about this, given the fear and panic that had set in. When I got home, I got out a piece of paper and made a list of the people I would need to call due to physical contact that I had made just in the past week alone: 1. My supervisor in long-term care 2. Infection control for long-term care 3. My son’s sitter from Tuesday 4. My son’s sitter from Monday 5. My in-laws, who currently had my son 6. My therapist 7. Two friends to whom I had delivered crafting supplies over the weekend These individuals were only the ones I knew how to contact. What about the grocery store I’d been to over the weekend? What about my husband’s work? Then came the thought that has haunted me since I was sent to the exam room for the second time: what about all the patients I’d come in contact with? This thought still makes me cry on and off every day. I was not a confirmed positive, which means they and their families are not being contacted. In one week, I have worked with many at-risk groups (patients with chronic respiratory conditions, patients with compromised immune systems, elderly patients) in addition to patients with no underlying concerns who should also be notified. There is nothing that I can do. Between that night and the next morning, I had called everyone on my list, depending on who was available outside of business hours. The phone calls were mentally exhausting. I was asked questions that I didn’t have answers to. I was asked to provide direction on what to do, when I hadn’t been given much instruction myself. Human resources with my state-run, long-term care facility stated it would not grant me leave with pay unless I had documentation of a confirmed positive COVID-19 test. Then my doctor called me personally. He asked for an update on how I was doing, and then asked my permission to allow him to continue to try to get me testing. Despite his efforts, another day went by, and I wasn’t tested. By this point, my husband and son were in quarantine with me. Two days after my quarantine began, my symptoms got worse. I was actively coughing and had a fever. On this day, after multiple attempts, I finally spoke with the county health department. The woman I talked to informed me that based on my symptoms, the information from my provider, and who I’ve been in contact with, she believed I should be tested. However, she said, she didn’t know how to make that happen. I spoke to my doctor again that afternoon. For about the tenth time in three days, the only person fighting for anything is defeatedly apologizing to me. I still will not be tested. Again, after this phone conversation, I broke into tears. Since I’m in my early 30s, and because, aside from my asthma, I’m otherwise healthy, I will likely have a full recovery. But I’m terrified for my patients. I’m concerned for those I’ve cared for who might be at terrible medical risk. When the law states that notification only happens during a known contact of a positive COVID-19 test, I believe it is a breach of medical ethics not to test symptomatic health care professionals. Medical groups fail their patients when their own staff isn’t protected. I’m past fear. I’m angry. Concerned about the coronavirus? Stay safe using tips from these articles: For Anyone Who Needs to Hear This: It’s OK to Just Exist Right Now Making the Most Out of Virtual Mental Health Appointments 10 Face Masks People With Chronic Illness Recommend 8 Soaps You Can Use to Help Prevent the Spread of Illness If I Get COVID-19 It Might Be Ableism – Not the Virus – That Kills Me This story originally appeared on Scary Mommy.

    Ali Hardy
    Ali Hardy @alihardy

    My Friend Helped Find My Rare Disease Diagnosis, Not My Doctor

    I met him in June 2014 when I did a summer acting program in New York City. He was a staff member at the school and the one assigned to audition me for the two year program. A year and a half later, when my symptoms were finally under control enough to begin the program, we met again after orientation. I had been completely upfront with the school from the beginning about my health, because I knew I would need accommodations and had problems getting them in the past. The school hadn’t had a student with my illnesses before, so it was a first for everyone. After speaking with student services I was asked to speak with the Director of Education, who ended up being the same person who had auditioned me a year and a half before. Over the course of my first year in college, we talked a lot. He quickly became a mentor and extremely supportive of my struggle to manage my illnesses. At first, our conversations were the typical “maybe you’re not trying hard enough, I think you should try these super obvious things like juice cleanses and yoga.” But over time he became much more understanding. Not wanting to be seen as difficult, I’d try most of the suggestions, after triple checking to make sure it wouldn’t make things worse. I knew if he was going to believe that I had really tried everything I could, he would need to see these things fail for himself. Plus I appreciated the fact that he was actually taking the time to do the research and educate himself on my illnesses. No one had ever done that before, so I figured I could at least hear what he had to say. As the year went on my health became significantly worse. I had a brief break in symptoms over the summer after trying a new treatment, but by the time classes were starting up again I could no longer afford it. On the first day of classes during my second year, I had back to back cluster headaches and a hemiplegic migraine. I panicked. I told him I was worried about how my health was going to affect my education and wasn’t sure how much more I could take with my health declining as rapidly as it was. A few days later he asked me if I had ever heard of Hughes syndrome (also known as antiphospholipid syndrome or APS) and suggested that I get tested for it. I had an appointment scheduled with a new primary care physician in a few weeks and tried to hold out till then. During that appointment I asked my doctor to be tested for APS, along with Lyme and Von Willebrand disease. She said they were all unnecessary, so I asked if we could just test the APS. She had to Google what is was and told me it was impossible, and I need to stop looking for problems. I kept pushing until finally she agreed to test me. A week later I got my results. I had a low positive. I was in complete shock. I was so used to tests coming back negative that I couldn’t believe one actually came back positive. I asked to be tested again in 12 weeks and the doctor told me it wasn’t necessary and that the results didn’t mean anything. I told her that APS is supposed to be retested six weeks after a positive result to confirm the diagnosis. She tested it, but refused to let me see the results, told me to stop looking for things to be wrong with me and fired me as a patient. So when I went back to Washington to visit my family for the holidays I had my naturopath there retest me again. It was still positive. After seven long years I finally had a diagnosis. I had antiphospholipid syndrome. APS is a rare autoimmune disease that attacks the proteins in the blood causing it to clot too quickly, leading to life-threatening consequences. And since blood is pumped through every organ and system in the body, it can affect every organ and system in the body. For me, most of my symptoms are neurological. In fact, APS is known to not just cause migraines, but hemiplegic migraines specifically. My naturopath was just about as happy as I was with the results. I started seeing her during my first year being sick, so she was glad we finally had an answer and that we had caught it before it was too late. APS has been referred to as the “silent killer” because you can seem totally fine, then develop a blood clot that leads to a stroke, heart attack, DVT, or pulmonary embolism. In fact, most people I have talked to since being diagnosed with the disease have already survived blood clotting events and are worried they might not survive the next. Now I want to be clear, I am so unbelievably grateful for what my friend did. I will never be able to find the words to accurately describe how much this means to me. I spent years of my life searching for answers and am heavily involved in the chronic illness community, and I had never heard of APS before, so I know it took a lot to find it. But what upsets me about the entire situation is he shouldn’t have had to find it. On average an autoimmune disease patient sees about four doctors over two and a half to three years before receiving a diagnosis. And a rare disease patient sees about eight doctors, four primary and four specialists, over a four year period before receiving a diagnosis. And in both cases patients are often misdiagnosed before getting the correct diagnosis. I had seen six primary doctors and over 30 physicians in multiple states over a seven year period before being diagnosed, and I am so lucky that I didn’t have a serious clotting event during that time. Out of the 14 diagnosis I have received, seven came from other patients, were self-diagnosed before being confirmed or something I heard about from a friend. Most of my treatments were ones I looked up or were suggested from someone outside the medical community. And there have been multiple times a treatment has made me worse and it ended up being another patient who explained to me that what my doctor prescribed was not something I could take because of my illness. Med students are taught “when you hear hoofbeats think horses not zebras,” meaning don’t assume the patient’s symptoms are caused by a rare disease, because it’s most likely something more common. But what if they did believe it was rare? Could it lead to more patients receiving the correct diagnosis faster? One in 10 people have a rare disease, so zebras are much more common than most people may think. I’ve spent years of my life being dismissed by people who ended up being wrong. I’d go to appointment after appointment with piles of research and ask if they could just look over it, only to be told to stop searching for things to be wrong with me, labeled as a difficult patient and told that a diagnosis wouldn’t change their course of treatment. I think they tend to forget that health insurance companies won’t cover certain treatments without a proper diagnosis. I don’t know if it’s from a lack of education, lack of research or if simply no one gives a shit, but something needs to change. Too many people are being left undiagnosed for way too long and are having to fight like hell just to get anywhere. I find it hard to believe that out of 36 healthcare providers I had seen, not one thought of starting to test me for autoimmune diseases other than lupus. Or for rare diseases at all. We should be able to trust the medical community with our lives, not have to rely on ourselves and others. And in return, doctors need to not dismiss things we bring up ourselves, or like in my case, things our friends find for us.