Congestive Heart Failure

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Congestive Heart Failure
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    Community Voices

    How are you?

    When I’m asked that question, and I’m depressed, as I currently am, I say: “I’m taking air in, and letting it out.” So far the only response I’ve had is laughter. Probably because I use humor yo cope. But when I say that, that’s about the extent of what I can manage to do. And if I’m having an asthma flare, or an episode of congestive heart failure… it’s even more of a struggle…#takingairin

    4 people are talking about this
    Community Voices

    Undiagnosed, trying to navigate the healthcare system.

    I've been trying to get answers about what the hell is wrong with me for so long I am starting to lose hope. Growing up my parents thought I was just a hypochondriac. Then when I was able to start going to doctors visits on my own and was diagnosed with #PCOS at the age of 15/16 I finally had proof that some if my symptoms were real.

    I was finally diagnosed with #mitral vavle prolapse at the age of 26. Turns out that I've had it my entire life but no one cought it until just recently. In addition to the mitral valve prolapse I was also diagnosed with #CongestiveHeartFailure #rectocele #vaginismus #lymphadenopathy #BipolarDisorder #Hypertension #Sleep apnea and #PelvicFloorDysfunction .

    I also fit the criteria for a lot of other conditions but I'm having a hard time getting clear answers from my doctors as to wether I do or do not have these other conditions.

    Does anyone else find it difficult to actually get a diagnosis from their doctors? Even when you meet all of the criteria for such diagnosis?

    My current issue is that I'm trying to get in to see a geneticists to get tested for #EhlersDanlosSyndrome and other connective tissue disorders. In order to do so you have to provide a lot of documentation showing why you should be tested for genetic conditions. Part of this documentation would include the conditions that you've been diagnosed with. But since I have not gotten an official diagnosis for many of the conditions I suffer from I don't have a way to include them in the documentation to send to the geneticist and I have been denied an appointment twice now.

    It's like a puzzle. I need my doctors to help identify the missing pieces so that I can go to the geneticist and have them complete the puzzle but I am so tired of having to push and push and push to try and find doctors that are willing to run the tests and not just give up before the missing process are identified.

    Why is the process so difficult? On top of it all I have suffered from #Undiagnosed #ChronicFatigue for the past 8 years and I just don't have the energy to continue fighting. But if I don't continue fighting then I'm only going to continue to decline. It's a never ending loop.

    5 people are talking about this
    Community Voices
    Community Voices

    So suffer from congestive heart failure, depression, PTSD, and epilepsy. Was denied disability, because they would of had to back pay me to 2013. My alimony ran out today, and found out SSI will only pay 800 a month. Our system is so screwed. I have no choice but to work full time, when my Drs advise me not to work at all. UGH

    3 people are talking about this
    Charlie Bickel

    Chronically Ill People, Stop Accusing Others of Faking Their Illnesses

    It’s 2014. I am struggling with severe chronic pain, dizziness, gastrointestinal issues, injuries, and declining mental health. Doctor after doctor, fake friend after fake friend, tell me is in my head, that it is only fibromyalgia, that there is nothing they can do, to lose weight, or that it is just anxiety. My health continues to decline, and continues to suffer. Years of invalidation, neglect, and medical abuse lead me to believe that maybe it is in my head, maybe I was faking it, and with that, I started to give up and succumb to the toxic and dangerous beliefs of the medical professionals around me. It’s 2017. I started joining chronic illness support groups, I started following people with chronic illnesses on Instagram, I started watching youtube videos of younger people like me living with chronic illness. I was not looking for strangers to diagnose me. I was looking for solidarity and support from other people like me. I found chronically ill people my age, and even some who are also LGBTQ+. I learned that people I grew up with also had chronic illnesses that worsened as adults. I found people with professional diagnoses, I found people like me who were undiagnosed or misdiagnosed looking for support and learning to advocate for themselves. I found some of the most nurturing and understanding people online. But I also came across a lot of people, even some who are also chronically ill, who went out of their way to try to prove other disabled people were faking their illnesses, trying to gatekeep the very diagnoses and community they fought for, and often invalidating those who were undiagnosed seeking answers. At some point or another, most disabled people live their lives undiagnosed. We fight for doctors to listen. We fight for more tests. We fight for the treatment we deserve. Some of us are lucky and have the privilege of obtaining an accurate diagnosis and treatment. Some of us are not. With rampant sexism, racism, classism, etc. in the medical field, not everyone has access to healthcare, people of other minorities are more likely to face medical neglect, discrimination, and severe complications that are even sometimes life-threatening. Everyone’s path to diagnosis and recovery is different. Not everyone has the same luxuries as others. With or without a diagnosis, people deserve to feel like they belong in the disabled community. With or without adequate healthcare, people deserve to have people to reach out to, have people to confide in, and even people to help them navigate this messed-up system. It’s 2021. I am diagnosed with hypermobile Ehlers-Danlos syndrome by a geneticist who specializes in my condition. Following that diagnosis, I am referred to multiple specialists who help diagnose me with the comorbidities and complications that come with my disease. I was validated and taken seriously for the first time in my life, but because of years of being invalidated by doctors, old friends, and people online, I still deal with feeling like an imposter on a daily basis. It is hard to believe in yourself, know your worth, and know what you deserve when you have spent your whole life thinking it is all in your head or that your illnesses are your fault. Even with an accurate, professional diagnosis, I still fear I will be accused of faking my illnesses or being ostracized in the disabled community. I lost years of my life due to being unable to get out of bed or leave my home, and due to irreparable damage and declining health caused by years of neglect and no answers. I will never gain it back. Another reason why it may seem easier to accuse others of faking their illnesses is the fact that social media is structured to cater to our interests. On social media sites such as Instagram and Tik Tok, there is an algorithm in place that caters to our interests, identities, what we look for, and patterns they notice. Because of this, if someone is posting a lot about chronic illness or a specific disease that they have, that is the type of content that social media sites will show you or recommend to you. When we are in this loop of constant exposure to chronic illness, it makes our community look much larger than it really is. The algorithm puts it in a tiny bubble, making it difficult to see the world beyond that. Anytime I go see a new doctor, a new nurse, or have casual or often intrusive conversations with strangers, I am reminded of how rare my disease is and how very few people have heard of it, let alone know someone who has it. While social media catering to your interests is beneficial to find people to relate to, to find content important or useful to you, it also isolates us from the world around us. As a nonbinary queer person, I see a lot of nonbinary and queer influencers online recommended for me to follow, but then in public, I am reminded of how few of us there really are. What a straight person without chronic illnesses is interested in and what they see online is not what I see, and they do not see what I am exposed to either. Part of the problem we face in the disabled community is a lack of perception of the actual prevalence of chronic illness as a whole versus specific chronic illnesses. The disabled community comprises approximately ¼ of the population. Being disabled in and of itself is not rare. Most people are likely to develop a disability or chronic illness at some point in their life. While we may not all have the same illnesses, and while it may seem like there is a surge of new people being diagnosed with what we have, we have to remind ourselves that being chronically ill by itself is not uncommon and many diseases that we thought were rare are no longer considered rare. That being said, having a rare or common disease does not determine the severity of the condition you may have. Common diseases like congestive heart failure, lupus, rheumatoid arthritis, and diabetes are often incredibly debilitating and sometimes life-threatening, and those conditions being common does not change the severity or importance of such diseases. People often fear that if people are faking their illnesses, they will affect whether people will take their diseases seriously or not. While that is a valid fear, as many people with serious, debilitating conditions are often invalidated or trivialized, accusing other disabled people of faking their illness or pitting other disabled people against each other will not fix the oppressive and dangerous flaws in our healthcare system today. Other disabled people are not the problem. People reaching out for health and for those who are undiagnosed seeking validation and answers are not the problem. The rare, very few people who are actually faking are not the problem. The problem lies in a healthcare system rooted in racism, sexism, classism, etc. that actively chooses to not take their patients seriously and put them through neglect and medical trauma. The problem lies in medical research that is biased by not including all types of people. The problem lies in outdated approaches in the medical field that harm patients. The problem lies in the stigma and oppression disabled people face in this country. The problem lies in poverty. The problem lies in a system that does not want to treat us. The problem lies in a world that fails us. No one deserves to live their lives without answers or treatment. No one deserves to live their lives with invalidation and neglect. We, as a collective community of chronically ill people, have to stand up for each other, believe in each other, and stay together. If we are divided and torn apart, the corrupt and oppressive medical industry and ableist structures of society will win.

    Community Voices

    Diuretic Medicine will help me live longer, but it will adversely/negatively affect my teeth.

    I went to the doctor Again today - this time to get the results of my thyroid blood test Panel (3 different tests) that my Ear, Nose, and Throat doctor was Supposed to be sending to him. The results have Not been sent yet.

    I showed the General Practitioner doctor today the condition of my feet. He said - that’s a lot of edema. I said thst I had stopped taking my diuretic medicine several years ago because it caused me to have severe leg cramps and because it started me on the process of having the dry mouth symptom which has Really caused my teeth to have a lot of problems.

    What it comes down to is - do I really want to take a chance on developing congestive heart failure or other heart problems by Not taking a daily diuretic pill - or can I take the daily diuretic pill and explain to my dentist Why my teeth keep getting worse? Taking the daily diuretic pill will inevitably lead me to have even Larger dental bills, more crowns, and other dental work.

    But taking the diuretic pill will also reduce the edema All Over my body and may help my weight to go Down as a result of getting rid of so much stored water weight. & Doing that will help my blood pressure to eventually get lower than 162/100.

    The GP doctor also said today that getting my thyroid blood levels reduced/unelevated may help me to lose weight.

    They still have not told me if I have Hashimoto’s disease or not or if (horrible thought!!!) I need to have my thyroid gland or glands removed.

    The GP said Officially that he Is referring me to an endocrinologist. The nurse said that the endocrinology office staff person will call me and give me a choice of locations to go to & that I can tell them that I take cabs and need to have an endocrinologist (if possible) who has an office that is an Affordable distance away by cab.

    Here lately, for me, trying to get healthier is involving more than usual the amount of doctors and more changes in medicine than I used to have.

    2 people are talking about this
    Community Voices

    Feeling trapped by pain, no relief options.

    <p>Feeling trapped by pain, no relief options.</p>
    6 people are talking about this
    Community Voices

    Blood Pressure Monitor recommendations?

    <p>Blood Pressure Monitor recommendations?</p>
    9 people are talking about this
    Community Voices

    Who is someone that has been there for you in your life when times were tough?

    <p>Who is someone that has been there for you in your life when times were tough?</p>
    19 people are talking about this
    Community Voices

    When is it ok to give up?

    TW: depression, trauma, terminal illness *super long vent, sorry*

    I feel like this #Cancer is taking everything away from me, what little I had left. Prior to diagnosis in April, I had to quit my job for health reasons and filed for disability (medically approved now but for the cancer but still no final word from them). I was struggling with #CPTSD , #MajorDepressiveDisorder , #ObsessiveCompulsiveDisorder , #Fibromyalgia , #PsoriaticArthritis , #Asthma , #sjogrens , #SevereAllergies , #Bursitis , #PolycysticOvarySyndrome , #DiabetesType2 and a bunch of other complications from all of these things plus a few more diagnosed illnesses. All whilst trying to get a divorce (still trying to get it).

    So in April I go to the ER thinking Covid. Nope. Lungs both full of fluid from #CongestiveHeartFailure . Apparently I had a heart attack and didn’t notice as I was told a lot of chronic pain patients don’t because we’re used to random severe pain. Also they found a grapefruit sized tumor on my liver, stage 4 #BileDuctCancer in my #liver and it had spread to some lymph nodes on my abdomen. I have no medical insurance.

    So now here we are in July and I’ve been in chemo since May. I’ve had a few minor surgeries/procedures and I have to have my port removed/replaced which is why I’ve been in pain there since May.

    Now it turns out on top of mouth problems, fatigue, low white blood cells as side effect to my #Chemotherapy , I have been diagnosed with #ChemotherapyinducedPeripheralNeuropathy which has been the most painful experience of my life. They said it was a severe case.

    They also think either a #cateract or #Glaucoma in my left eye which is why my eye hurts and I can barely see. Either could leave me blind. I’m an artist by trade, I’ve won awards for my cakes and every one of my hobbies is art/craft/visual. Now I can’t tolerate any amount of light without it being painful and I can’t do anything with my hands without being in major pain from the neuropathy. I can’t enjoy anything or do anything for myself, already fell down the stairs last week because of my vision/neuropathy combo.

    Also, I’ve had to get 2 Neupogen (helps bone marrow make white blood cells) shots this weekend and like every other week. The bone pain makes my body shake uncontrollably and nothing will help it.

    All this has led to me being a walking pharmaceutical cocktail and the side effects are brutal. I picked up a new med today, tonight my little medicine bag overflowed and I broke down. I just turned 40 in May. I have more meds than years on this earth. I have a terminal illness that makes me ineligible for the heart transplant that I need but im technically not dying according to my oncologist.

    So at what point is it ok to say I’ve done enough, I’m tired and I give up, I want out? Daily living is torture and there’s no joy.

    Thank you if you made it this far!

    18 people are talking about this