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    Community Voices
    Community Voices

    I’m new here!

    Hi, my name is TwistedVixen909. I'm here because I have been having a rough time lately. My daughter has an illness, and will need to have a transplant to survive and has had multiple complications due to her illness. I’ve lost my job, my home, and I’m about to lose my car, and our pets.

    #MightyTogether #Anxiety #Depression #BipolarDisorder #Migraine #PTSD #ADHD

    5 people are talking about this
    Community Voices

    The Art of Living

    Part 1 of 2 My daughter, Laura was born with #Cystinosis . Laura went through so many struggles medically in her life. Laura was a firm believer in science, in the potential treatments to be found, in making life better for the next person, always happily being a guinea pig for any medical study that came along. She didn’t long for a cure, she longed to live the best life possible. #Cystinosis was just part of who she was, like being a 4’10 blondie.

    In 2017 when Laura’s first #Transplant failed. She quickly began hemodialysis, and it was awful. Laura ended up with uncontrolled blood pressure which made her brain swell. For days, she couldn’t communicate other than to make the “Ma” sound. She was in this spastic body and you saw her fear and frustration in her eyes. She developed #Clostridiumdifficile while she was in the hospital and I quickly learned in the ICU they could not diaper her. Let me tell you it was amazingly gross; the poop literally flew. The #Spasticity that was happening added to the mess. She was scared, you could see it in her wild always open eyes, and she wanted to be touched every moment. We took turns sleeping in shifts so someone could have a hand on her 24/7. The doctors said she may need step down care, rehab type care which was so very scary. As she began regaining her mind and the swelling subsided I walked into her ICU room to see her on her knees on the bed singing “Despacito” at the top of her lungs swaying to her tune. Laura was coming back. It was decided that she would come to my house and live. She and her two dogs came to my house after this hospital stay. It was rough in the beginning. The dogs were wild and Laura was so very confused. She would wake up yelling for me not sure where she was, in some ways like a child. As she came back to herself, she told me when she couldn’t communicate she was in an episode of Modern Family, her mind took her away to another place that was safe from the pain. She could not drive at this time and I recruited people to give her rides to or from dialysis. Hemodialysis was rough. She would come home wiped out, legs cramping. She had minimal energy, sleeping tons, lots of headaches. We were taught to do peritoneal dialysis (PD). We went to classes and sat through days at clinic so SHE could take control of her healthcare. A new port put in and we found out that Dobby (her first transplanted kidney) was dead inside her and needed to come out immediately. She got through yet another surgery and she moved onto PD. She settled into the routine of 4 exchanges a day, every 6 hours, time windows for fun. She could have used the cycler machine at night but she worried how that would affect her dogs and her sleep. Laura valued her dogs and sleep way more than anything else.

    Laura’s life over those few years was rough. She learned to have a clean car so she could do her exchanges as she chased adventure. And she did have adventures, she went to Miami and Los Angeles for festivals, to London and Ireland for two weeks and saw her beloved Harry Potter sets, Arizona, Philadelphia a couple of times, places that I can’t remember because she was always planning her next adventure. She adapted to her new reality which was what Laura was- adaptable. When life threw another curve ball and her foot was fractured and needed surgery. She adapted. Even as a child when she would constantly throw up, she accepted it, made it just something she did and moved on. She didn’t know the words, “You can’t do this” or maybe “you are just too sick or hurt”. Once she figured out how to make her life work around whatever obstacle she started making plans. The girl was a planner. We had so many plans, lists of places to go, people to see.

    But, in October of 1999 Laura was hospitalized and this time was different. when I walked into the hospital room I knew she may not recover. This time might be the one she couldn’t overcome. As the days progressed, she could not even give a feeble thumbs up, her eyes were closed and minimally reactive. I started trying to adopt her bravery, I had to face that my girl may not be able to come home again. Laura didn’t like you to dwell in sadness, she wanted giggles and grins and that was what I needed to give her. On October 15th at 11:30am she left this world surrounded with laughter through tears and boundless love.

    The best thing about Laura was she loved her people. She collected them like seashells, that, I like to think, she got from me. Once she made you part of her heart you resided there forever. And you were lucky. To be loved by Laura meant tons of laughs, singing at the top of your lungs barreling

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    Katie Jo Gee

    How COVID Vaccine Refusers Make My Life With Disabilities Harder

    I’m struggling. Another person’s cold has left me without a voice, constant pressure in my chest, and this means another weekend spent going between laying and sleeping. But I deal. I deal because this is the deck of cards I was given, and you play with the cards you have, not the ones you wish you had. Lately, I have become more and more frustrated with the lack of empathy throughout society. I look at others’ metaphorical hands and they make such light comments about their deck or throw their cards around like they don’t matter. Sometimes I imagine taking literal cards from people that have things like “can procreate” or “mentally healthy” or “can breathe going upstairs” on them, holding them up to their people’s faces and screaming “Why you? Appreciate this!” I have always struggled with this frustration. To combat this, well honestly, this selfishness of mine, my mother and father taught me to use perspective-taking, and to empathize. They worked to help me really understand what matters to another person to work on this frustration. We worked so hard on this that I am able to feel what is just as important in another’s eyes even though the situation may not feel as large as my own. I know I can empathize, and that this quality has helped me greatly work with the population of amazing students I am honored to work with, but I am really struggling with consistently implementing my strategies with adults. I’m struggling with adults that say they are against vaccinations… now, if they are someone who watches everything they consume, I get that! If they watch GMOs, pesticides, and their consumable materials, I totally get that they are truly wanting to wait for more evidence. But I just want to know, how much evidence is enough? How many lives must be ended or negatively impacted before you are willing to put yourself at whatever risks you are worried about? For instance, after you’ve had 10 friends die from COVID, then is it worth attempting the shot? Or does the shot need to be around three years old, and then you’ll take it? I just want to know the deciding factor as someone who doesn’t have the luxury to question those decisions. I’m struggling with adults who are anti-vaccination but then consume alcohol like rye, potatoes, and wheat are going out of business, or join fitness programs where they take powders and supplements that they didn’t research. How can you say you don’t want to inject yourself with a substance because you don’t trust it, but you’ll purchase a brightly colored powder and suck it down because a friend of yours says it helped them drop a couple of pounds or reinvigorated their sex life? I’m struggling with folks who are busy blaming the effects of a broken system rather than making active steps to repair the systems that lead to the effects. These people that are getting to walk away after wielding weapons or being identified as previous abusers and gaining powerful roles, I am having a hard time empathizing with them. Especially when I know the situation would be completely different if one component was changed. These are the people that are cycling in my mind when I begin to think I need to apply for disability. For, you see, many have asked me to sign up for disability throughout the years, but I continued to say the same, “I’m not sick enough yet.” When I was told I couldn’t play aggressive sports and quit basketball and volleyball in middle school (forcing me to attempt music and acting — which was a laugh), I wasn’t sick enough. When I was given more and more restrictions about when to sit out and received eye-rolls and passive-aggressive responses from physical education staff, I wasn’t sick enough. When I was told I may be going onto the transplant list and had girls spread jokes that I couldn’t have sex because of my deformed heart, I wasn’t sick enough. When I was cut open and given a robotic device and people told me or texted others that I was dramatic as I struggled through processing the mortality rates I was researching during late nights, I wasn’t sick enough. When I was shamed by many for getting a tubal ligation because I was afraid of losing my reproductive rights should I ever get pregnant, I wasn’t sick enough. When I was late to our wedding rehearsal because I was pushing myself too hard and forced my organ into several arrhythmias and worsening heart failure, I wasn’t sick enough. When I woke up in surgery and felt them burn my heart so the lower half became paralyzed and dependent on a machine for the rest of my life, and returned to “you don’t look that sick” four days later, I wasn’t sick enough. But now, the world is sick enough, which makes me think I am sick enough because I haven’t felt that before. I’ve never felt that I was boxed in with no other wiggle room to find a place where I could be successful. The abled often do not care for the disabled, until they become them, or are “burdened” by them. They’ll pray for their healing, but won’t get a shot for them. They’ll speak of freedom and proof, but dismiss the truths that are uncomfortable for them with fallacies. Long story short? I officially qualify for disability parking and am looking forward to the snide remarks and side-eyeing because I know I waited until they were sick enough for me to admit I was too. Next stop, more disability decisions, and full-on warrior woman advocate powers!

    Community Voices

    I'm new here!

    Hi, my name is CoolHandHan. I'm here because

    I have just had a stem cell transplant in the hope to halt MS #MightyTogether

    3 people are talking about this
    Community Voices

    I’m new here!

    Hi, my name is Starbucks. I'm here because
    I am struggling with feelings of not wanting to go on. I have gastroparesis, CIPO, short bowel, TPN dependent, on transplant list. I really struggle because I can't live a normal life. Yet no one understands. All of my friends and family still have expectations. When I can barely get out of bed. I feel hurt because I explain over and over what I need. Primarily is not worked ng in the fily business. But I keep getting reeled in. Despite how many times I say I can't work. It's way to difficult and taking energy. I desperately need to prepare for my transplant. I feel so alone.
    #MightyTogether #Gastroparesis

    2 people are talking about this
    Megan Glosson

    How Roe v. Wade Being Overturned Harms People With Health Conditions

    This past Friday, the Supreme Court voted five to four in favor of overturning Roe v. Wade. This landmark court decision from 1973 established the constitutional right to abortion. Now, individual states will get to decide whether or not they will allow abortion. People across the country are experiencing mixed feelings about this perplexing court ruling. However, many people, including the justices who voted in favor of overturning the court’s previous ruling on the matter, are not thinking about the way in which this decision will impact the millions of American women and people with a uterus who live with chronic health conditions. So, here are just some of the people the justices of the Supreme Court of the United States failed to consider when they overturned Roe v. Wade and all but outlawed abortion for over half of the states in our country. 1. The Transplant Recipients Whose Medications Make Pregnancy Problematic Although it is possible for a transplant recipient to get pregnant and carry a baby to term, there are many potential complications. First and foremost, many anti-rejection medications can cause birth defects that would make life unsustainable for the fetus. They can also build up to toxic levels in the fetus’ bloodstream, which can lead to other complications. Although there are some medications that are safe for the fetus, any change in immunosuppressants must be made gradually so doctors can measure if these medications are actually doing their job (because not every medication works for every person). Also, because medication levels are based on weight, pregnancy can impact the medication levels in a way that leads to organ rejection during the pregnancy, making it a life-threatening situation for parent and fetus. 2. The People Whose Autoimmune Disorder Could Cause Complications Many autoimmune disorders cause your immune system to attack healthy tissue. This means that a pre-existing autoimmune disorder can interfere with the pregnancy by harming the fetus. Even if the autoimmune disorder allows the pregnancy to continue, the mother’s antibodies can enter the fetus’s system and disrupt its development and growth. Furthermore, some people don’t even know they have an autoimmune disorder until their pregnancy triggers it. In these cases, a person may find that being pregnant is interfering with their life so much that it’s not possible to continue living while pregnant. 3. Those Who Live With a Genetic Disorder That Could Prove Fatal for the Baby Living with a rare disease is not an easy road. However, some genetic disorders can be fatal, and passing them down to a child can increase the risk of fatality for the baby. These conditions include Huntington’s disease, vascular EDS (vEDS), cystic fibrosis, Marfan’s syndrome, and many other genetic disorders that someone can either have or be a carrier for. Even if the baby makes it through delivery, they will have a hard life (assuming they can sustain life). 4. The People Whose Endometriosis Caused an Ectopic Pregnancy People with endometriosis are twice as likely to experience ectopic pregnancies than the average person. Unfortunately, there’s zero possibility of an ectopic pregnancy becoming viable, no matter what marvels of modern medicine an OBGYN can perform. Usually, ectopic pregnancies are treated with injections that end the pregnancy or surgery to remove the fallopian tube. Either way, these life-saving medical procedures can be considered forms of abortion, and would now be punishable by law in some states. This means that people could face jail time for something completely out of their control just because they chose to save their own life. And without Roe v. Wade, there’s nothing a person can do about it if their state’s court system decides to rule against them. 5. Those Whose Cancer Treatment Would Affect the Fetus Breast cancer is the most commonly occurring type of cancer for women, and breast cancer rates are on the rise for women of childbearing age. Unfortunately, many of the recommended forms of cancer treatment can cause harm to a fetus and are not compatible with pregnancy. There are instances where a pregnant person with cancer can either wait until after their child is born to undergo treatment or select treatment methods that are least harmful to the fetus. However, there are also times when someone may need to decide whether it’s better to end a pregnancy during the early stages so they can undergo cancer treatment, or risk bringing a baby into the world while also dying. It’s not an easy decision to make either way, but the overruling of Roe v. Wade now makes it even more challenging. 6. The People Who Live With Mental Health Conditions That Require Daily Medications There are countless mental health conditions that require daily medications. Some of these conditions include depression, anxiety, bipolar disorder, and schizophrenia. However, even with the wide variety of available medications out there for each and every single mental health condition, the American College of Obstetricians and Gynecologists still says a majority of these medications are not safe during pregnancy, especially during the first trimester. Whether a pregnancy was planned or unexpected, a pregnant person who uses one or more psychiatric medications may be forced to decide whether or not they want to expose their fetus to the risks associated with the medication. In many cases, these medications can cause harmful birth defects or even harm the fetus in a way that makes life unsustainable. Therefore, these individuals need as many choices as possible available to them, including the right to terminate the pregnancy if that’s what they and their medical team feel is best. 7. Those Whose Epilepsy Puts Them At Risk for a Stillbirth Women with epilepsy are up to three times as likely to have a pregnancy that results in stillbirth than women who do not live with epilepsy. Sometimes, there’s no way of knowing whether they will experience a stillborn birth, whereas other times an OBGYN may no longer detect signs of life before the pregnant person even hits the third trimester. Without the option to abort, these individuals will be forced to carry a pregnancy to term even though the fetus will no longer grow and develop. 8. The People Who Almost Died With Their First Baby and Don’t Want to Go Through That Again There’s a lot that is still unknown about how pregnancy impacts the body. Conditions like pre-eclampsia are largely undetectable until it’s too late, as are other rare pregnancy complications. However, people who experience these issues during their first pregnancy are more likely to experience them again. This means a person may take active measures to avoid additional pregnancies. Unfortunately, no form of birth control is foolproof, and a person can still end up pregnant even when actively avoiding it. Should these individuals have to go through the same hell they endured during their first pregnancy if they don’t have to? And is that really someone else’s choice to make? 9. The Trans Man Who Would Struggle With the Dysphoria of a Pregnancy Thanks to the advances in modern medicine, trans men can do many things to counteract the gender dysphoria they experience. However, up to 30 percent of trans men still experience unplanned pregnancies. These pregnancies can lead to depression and other concerns due to the mixture of dysphoria and judgment from society. Before the overturning of Roe v. Wade, trans men could decide whether or not they wanted to go through with a pregnancy. Now that it is overturned, trans men in states with abortion laws in place may have no choice, and this combined with the stigma they likely already face due to society’s general view of the trans community in their geographic location, could cause depression and suicide rates to climb even more. This list isn’t exhaustive. However, it does provide a view into just how many people will be impacted due to the Supreme Court’s decision to overturn Roe v. Wade. In many cases, people who live with health conditions are already marginalized and mistreated by medical providers and society as a whole. Now they may face even more problems and harsh judgment just for making decisions that can help them continue to live. This isn’t the type of treatment anyone deserves, especially people who already have to fight for their right to live day in and day out.

    Community Voices

    I'm new here!

    Hi, my name is BakDownThere. I'm here because I have the things tagged here, along with back spasms on my right side that wraparound to the front or sort of vice versa.

    It's cause is unclear, but I have spinal stenosis from a schwannoma (growth/tumor). I also have a bunch of eastern barr virus tumors in my liver and one in my pelvic floor. That is causing me tremendous pain.

    I also have a kidney transplant and take immune suppressants, hence the tumors and growths.
    I was born with persistent cloaca, where my uro, genital, and....digestive? Tracts didn't finish forming. I was born with an impersonate cloaca, too.

    I javelin a 7 year old boy whose school has stopped masking. My poor boy has been sick most of the week and threw up yesterday.
    I feel terrible in my tummy and am praying not to vomit. It will hurt so much, it will be hard to breathe.
    I'm so sick of. Every single thing.

    Sorry my first post is like this. I am so miserable right this moment.
    But...I did find some odansetron (anti-nausea pills). So there's hppe!

    #MightyTogether #Anxiety #ADHD

    1 person is talking about this
    Community Voices

    Feel humiliated

    I was in good physical and mental health until 2005. My liver failed, my ammonia levels were high I was hallucinating and the outcome didn’t look goodI had to move from the state I lived back to my moms to get on the liver transplant list. I was so devastated. At that same time in 2005 my oldest brother was diagnosed with liver cancer and died within two months. The end of of 2005 my middle brother died of a heroin overdose. I lived and felt so guilty. My parents trudged forward in their 70s I was listed for a liver transplant in early 2006 at UPMC San Francisco. Over the course 3 years…I got better I jumped through every hoop there was, I was compliant. I have never been the same. Fast forward 10 yrs, I had been on Abilify and then lithium in addition. My PCP felt he couldn’t treat me as I need to be treated. I started seeing a Psychiatrist. After 2 years of trying to find a good dosage I had a psychotic break. I was terrified, I had no idea where I was who my husband dad or sons were. I got lost driving, fell regularly and my husband had no ideA what to do…it lasted a month and a half. My poor husband finally called my psychiatrist out of desperation. I have so little memory of that time except delusions hallucinations and confusion. I became incontinent, developed an essential tic in my right hand, lost a lot of memory and it took a piece of my soul by the time it was over. That was 2 years ago. Since that time I’ve had a host of health problems most have gone unfounded, I just feel like I’m crazy. It’s either in my head, it’s my anxiety. I don’t say anything to anybody anymore about how I feel, even if there’s something wrong I don’t disclose. I feel like I’m labeled a hypochondriac, I feel humiliated. My symptoms are not made up but I can’t convince anybody. I’m not crazy I know the difference between right and wrong, sick and healthy. I’m at a point now where after 3 years I feel so much worse than I started out.. I have a very miserable life. I have a PCP, a Psychiatrist , a psychoanalyst, a neurologist and a GI doctor. I feel like a fool and can’t see any hope.

    3 people are talking about this
    Community Voices

    That getting sucked in feeling! Having a good heart sometimes gets us in a whirlpool of disappointment.

    <p>That getting sucked in feeling! Having a good heart sometimes gets us in a whirlpool of disappointment.</p>
    1 person is talking about this