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    Community Voices

    I am new here

    Let me introduce myself
    Hello everyone,

    I am Luca 25 years old , I am a female. I am suffering from VACTERL association. Furthermore I have got a cystostomy because there was no muscle on my bladder because of that I was incontinence when I was a teenager. I have only one kidney but it is working very well, fortunately. l haven’t got uterus but I have got
    ovaries which are working very well as well. However I have got other gynecological problem: because of my cloaca malformation my sexual life is quite difficult actually I am to narrow for anything. My doctors don’t do anything with it. They are completely helpless with me.
    About me:
    I am a medical student. I like listening to music, reading a book or going to a concert. However I have been single for nearly five years due to my gynaecological problem, and I feel so lonely. I feel like nobody deserve to have me. Furthermore I have got ptsd, depression and panic attack according to my point of view, because the physicians say that I have no mental illness at all.
    of course if you have a question about my case I will answer it with pleasure.
    I have got an intermediate English exam but I am Hungarian,so if I make a fault in grammar please excuse me. #PTSD #PanicAttack #Vacterl #lonly

    13 people are talking about this
    Community Voices

    2917 Days in the Making

    <p>2917 Days in the Making</p>
    Community Voices

    Reconciling being disabled and seeking medical care with being suicidal and not thinking I deserve treatment.

    I find that my biggest identity crisis comes from me having a low baseline mood/general mental state and being chronically suicidal and feeling as though I'm betraying that by seeking necessary medical care for my illnesses. It makes me think that maybe, just maybe, I could be faking my problems for attention, despite my diagnoses. It's an uncomfortable balance I've been living in. Not balance at all. I'm having a spinal fusion that is 100% necessary for my well-being and return to work, but in my heart of hearts I feel that I'm just performing dramatic, attention seeking behaviors.

    #SuicidalThoughts #ChronicIllness #Vacterl

    Community Voices

    How has the #COVID19 pandemic affected your healthcare?

    I’m a writer who has a congenital birth condition that requires a lot of intervention to keeps me alive. I am putting together a series of articles together about how this virus is affecting people like us... Short supply of medical equipment, medications and all the limits you have to deal with. Whatever you say will be completely anonymous if you want it. #Vacterl #chronillness #TheDisabledLife

    1 person is talking about this
    Community Voices

    2917 Days in the Making

    <p>2917 Days in the Making</p>
    1 person is talking about this
    Community Voices
    Community Voices

    Disability can happen to anyone

    When you’re disabled, or chronically ill, the people around you tend to have a lot of…advice in order for you to “get better”. Or, they claim it’s not a big deal because they deal with “fatigue, pain, and bathroom issues too”.

    Some people will go as far as looking down on you because of your illness, because you obviously put yourself in this situation, you’re not taking care of yourself good enough, otherwise you would be better by now.

    It’s hard to describe being disabled to someone who isn’t. Mainly because there are similar correlations like pain, fatigue, indigestion, etc. For these to become a chronic everyday issue, the abled person has to assume these adjectives have more severe consequences, (basically worse than they have it or can imagine) and that they can be pretty permanent for a person. And that’s a hard pill for people to swallow: Permanent. This is a word we can seldom grasp, because everything in our life changes. The things that don’t, such as death we avoid talking about at all costs.

    But let me tell a story that an abled person can understand. My dad has a friend who is vegetarian. He eats lean and clean, all the time; he’s a “health freak”. One of those who goes to the gym as much as he can and has little fat content, but natural muscle mass. He looks way younger than he is because of this. He doesn’t drink, smoke, or do any drugs. He doesn’t do cheat days. And he lets his body heal after an intense workout. One day, he gets a blood clot in his arm and foot. He gets it checked out, but the doctor said he’ll be fine. The next day, his entire arm turns black. He goes to the ER, and his arm has to be amputated. Luckily, they could save his foot. He is now forever disabled, with one arm.

    This is a guy who did everything right. He was obsessed with being as healthy as possible, and that’s what he was. He never drank alcohol or soda, never had a cheat day, ate all the vegetables, fruit, nuts, etc. Drank only water, and was always hydrated. Went to the gym consistently, and had little body fat. No exercise injuries for pushing too hard. It was always enough to stay lean and skinny. But despite this, something still went wrong and he became disabled.

    It just goes to show: you can do everything right, but that doesn’t mean nothing will happen to you like most people think.

    When you have a #ChronicIllness, it doesn’t mean you’re doing something wrong; it means your body is broken. It’s abnormal. And a lot of times, it’s incurable.

    In order for something to be curable, there has to be a procedure or medicine that can stop all the symptoms or defects. In order for this to happen, the illness first and foremost has to take priority in research, and have the financial means to do so. But in order for THAT to happen, a large majority of the population has to have the illness. The medical field can’t just spend a ton of money on research and medicines for the 1% who has it. And that’s where most chronic illnesses lie…in that 1%. Do you know the statistics on how many people have #Vacterl? 1 in 40,000.

    There are things you can do to manage your illness, but even these managable procedures don’t cure you or put you in remission. Some procedures can make you feel worse but they are necessary to keep you alive or to keep your illness under control.

    And some things have to be limited. The world now thinks “exercise is the cure to EVERYTHING!” When in reality, people with defects in their bones and/or muscles can’t do normal exercise routines without making their pain worse and their bones in faster decline. This doesn’t mean they can’t exercise, it means they have to find other, more “softer” exercises such as yoga, walking, or swimming. Normal exercises such as running, competitive sport, jumping, sometimes weights, can ricochet the bones and grind them faster and harder against the cartilage or raw grinding bone to bone leaving less space and a LOT more pain.

    Even so, if the illness is correlated with chronic fatigue or #ChronicPain, these exercises can create an entire day of increased chronic pain, and/or chronic fatigue–especially if you try to exercise on a bad day. Not always though; with chronic illnesses we have these strange random symptom rules where an action (say exercise) can make you feel stronger one day, but the next day this same action can make you feel 10x worse. We don’t understand it either….

    This leads me to my next point: Our symptoms are not the same as yours. When I say I have stomach cramps or constipation, I don’t mean I ate a little too much. My intestines are paralyzed, meaning they don’t move food all the way through on their own. This causes severe obstructions, and literally screaming pain. The medicine I take for this causes more pain because they basically create seizers in the intestines to get them moving. And because your putting more things in your intestines, something that is made to also expand the feces in a sense, so think of an obstruction, then make it 2x bigger.

    When I say my back hurts and I’m tired, I don’t mean I’ve been slouching on my feet all day. My spine is a literal S with deformed butterfly-like vertebrae’s and fused vertebrae’s. I have a severe curve that sticks out my back. I have #Arthritis, and with my bones at an angle there is way less cartilage, so there is a lot of inflammation and way less time than normal people for my bones to literally grind on themselves with every move I make. For people with severe #Scoliosis, yes hello, WE PHYSICALLY HURT. Our bodies have to make up for the deformed spine, which make sacrifices in other ways, such as walking different in order to “correct the balance” which in time can create arthritis in the knees and more pressure on the lower back to hold up the upper back. Our bones are literally grinding on an angle creating inflammation and decreasing our cartlidge more and more. Our muscles have to work twice as hard at all times, in constant “clench” so we are able to even move. This means we are constantly using energy, even when sitting down. This is why we can more easily be fatigued, even if we haven’t done much.

    We’re not being overdramatic. Our bodies aren’t normal, so they don’t “do normal things” and therefore we are not on the same level of fatigue or pain. My body is working differently than your body. There’s a reason why it’s called chronic pain, or chronic fatigue, or chronic illness. It’s severe, and it’s ongoing. We’re not just in pain, and we’re not just tired. So before you say it’s not a big deal because you go through it too, ask yourself if your body has severe defects that can’t be cured.

    And my final point: Your advice won’t cure us. For some reason, when you have a chronic illness suddenly your friends and family are expert specialists and have all these answers to try. And most of the time…they’re so simple and it’s either already been tried by us, or it’s so stupid it’s laughable. The laughable advice are the people who tell you to take this miracle grass juice, people who tell you to literally think yourself into a “normal person” (visioning yourself cured/as a normal person and your body will magically follow suit) and the people who tell you to go on a “cleanse”. The simple advice people give, is to exercise, do yoga, eat healthy/vegetarian, put ice on it, put heat on it, surgery (which isn’t possible most of the time, or there isn’t a surgery to cure it) etc.

    This “advice” if it’s applicable, we have already tried and is probably part of our management if it helps us in the slightest (most of the time it doesn’t do zilch) but it will not cure us or put us in remission. Because if it did, we wouldn’t be having this conversation.

    So please, before you judge someone with an illness or injury put yourself in their shoes. Know we are not functioning on the same level, and that sometimes *gasp* some symptoms can be worse than yours. If it hasn’t been cured by a doctor, chances are your advice won’t cure your friend either. And remember, you can do everything right and still have something happen to you. Being disabled can happen to anyone, even you.

    Community Voices

    From 8 surgeries in two years to thriving toddler

    Nothing is harder for me as a mother than to watch my kids suffer through surgeries, procedures, and hospital visit after hospital visit. It’s even more hard when I can’t do anything about their pain or help them in any way. All three of my kids have had surgeries, but nothing compares to my son Daniel who’s had eight in two years.

    Daniel has some physical abnormalities that led to a number of surgeries in his first two years of life. He was born with #Vacterl assocation (Vertebrae, Anus, Cardiac, Trachea, Esophogus, Renal, Limb) birth defects that affects multiple parts of the body. Daniel has five of the defects including tethered cord, imperforate anus, narrow nasal passages, one kidney, and clubbed foot.

    He’s had a surgery for every one of the defects except the one kidney. His biggest surgery was when he got his colostomy stoma takedown in the summer of 2017, because he had to do it twice.

    Daniel was born without an anus and needed a colostomy bag right after birth. He had his stoma takedown a year later, removing the bag and stayed in the hospital for five days. He was eating well and pooping regularly so he was able to go home. Two days later he was running a fever of 100.8 degrees, wouldn’t eat anything, slept all day, and was bloated. The doctor told us that if he’d gotten an infection from surgery, we wouldn’t see symptoms for five days. That’s exactly what happened. The intestine leaked from where it was stitched up. The ER doctor had to bring up stomas again, because the area was too contaminated to just clean it out.

    I had never seen him so out of energy before. Daniel is usually running all over the place, but was laying down a lot and very quiet. He denied Pedialyte which at the time he loved. My gut feeling told me to go to the ER, which saved his life. We caught it at the beginning stages before it really spread.

    Daniel was in the hospital for another 12 days on antibiotics to clean out his system. He wasn’t able to eat until his system was cleared from all the bacteria so he became really lethargic. His temperature kept going up and down, but his labs and tests came back normal. So, he was moved to the Pediatric Intensive Care Unit (PICU) after three days to monitor him a little closer since they didn’t know why he was getting fevers. His system was clearing by an Nasogastric tube (NG) through his nose. Since they were running so many tests and couldn’t get a good IV due to lethargy, they decided to put in a Central Venous Line Placement through his neck. This helped with giving him medication, nutrition, and blood samples without poking him so much.

    It took about six days for the NG tube to look clear. The only thing that came back from blood cultures was the infection which was expected. What was frustrating was how surprised they were by his lethargy and no energy. I reminded them that he hadn’t eaten in five days. My mom said it best, “What’s he supposed to be doing? Jumping around in his crib?” It didn’t make sense. It was hard seeing him so weak, not allowed to eat anything. There was nothing I could do for him. He also cried everytime anyone came in the room.I felt like I was never able to comfort him when he needed it most. I couldn’t hold him for the first three weeks after his and then I wasn’t able to console him during his most vulnerable trials. In the most crucial parts of Daniel’s life, I felt like an outsider, even though I was right there with him

    .Once the NG tube was clear we did a CT scan which showed there were no pockets of infection. His blood levels were low so we decided to do a blood transfusion. The transfusion helped and he could finally eat after nine days.He spent his 1st birthday in the hospital but the nurses made his day special. They decorated his room and gave him some treats. We had a little party for him in the waiting room and he had enough energy to hang out with us for a little bit before going to bed.

    When Daniel came home he was very weak. It took him about two months to get back his strength. His physical therapist said that two weeks on bedrest takes away 80% of strength.Three months later, Daniel had his stoma takedown again and it went much better. Other than the colostomy, anus, and two stoma takedown surgeries, Daniel also had surgery on his nose twice to widen his airways, his achilles, and on his back for tethered cord.

    What gets me through these hard times is prayer and knowing God is there with us every step of the way. With everything going on with my family, I don’t really freak out about anything. I know people are praying for us, because I truly feel that love and support, which makes me so calm.

    Daniel’s physical disabilities and surgeries have delayed him a little bit, but nothing stops him from doing what he wants. He wears special orthotic shoes for his clubbed foot, which delayed his walking, but through physical therapy he was walking in no time. He only wears the shoes at night now.

    Daniel is finally thriving and doing things other two-year-olds do. He’s learning his shapes and colors right now. His imitation is incredible and does really good copying other people. We’re learning sign language for his brother Nicholas, but Daniel picks it up really quickly. He’s doing better with his eating and talking every day. He does occupational therapy once a week, speech & feeding therapy twice a week, and physical therapy twice a week.

    He’s certainly a fighter and is the strongest boy I know. Despite all he’s been through, Daniel is a happy little boy. I see God in him, and he’s definitely taught me what love is all about.

    Kelli Gruen

    The Challenges of Parenting a Medically Complex Child

    Our daughter is incredible. She’s inspiring. She’s tough. She’s brave. She’s strong. She is an adorable 4-and-a-half year old living with three rare conditions: Goldenhar syndrome, caudal regression/sacral agenesis, and VACTERL. We are not new to the world of disability. Each new diagnosis brings fear, questions, heartache and pain. And it never gets easier. Just a few days ago we were blindsided with news that we are still trying to process. Another diagnosis. This time, it’s her heart. What was supposed to be a regular check-up, turned into our worst nightmare. How naive of me to think we could just walk in to that appointment and come out scot-free.How naive of me to think that we could just have an easy appointment. And how naive of me to think I could handle all of it. Ashlyn was diagnosed with left ventricle non-compaction cardiomyopathy (LCVN). This condition seems to be wildly different for each person who has it. The doctors even said, “I can’t tell you what this means for your daughter’s life.” He explained she could live to be an adult before intervention is needed, or she could need a heart transplant in two years. He can’t tell us because he doesn’t know. Ashlyn is at risk of cardiac arrest or heart failure, and as I’m typing this, I still can’t believe it. No diagnosis has been so hard to hear. My mind runs, and my thoughts go from one extreme to another. I remind myself that it’s not easy being a medical mama. A medical mama knows a little about a lot. She knows to expect the unexpected. She’s knows that appointments will run long, and patience will run thin. She knows the torment of seeing her child in agonizing pain, and at times, being helpless in taking the pain away. She knows no appointment is “safe,” and that even a regular check-up can stop her in her tracks with a new diagnosis. She knows how to hold her head high long enough to get to the car, where she crumbles in heartache. She’s changed her grown child on a public restroom floor, because her child doesn’t fit in a baby changing station. She’s been judged by “typical” and mothers of kids with disabilities. She doesn’t quite fit in with either, because her daughter “looks OK,” but not quite “normal” enough. She’s administered endless amounts of medicine, learned how to do catheterizations, and is an expert on everything to do with her child. She’s perfected the art of covering ostomies and trying to rig medical devices and supplies to get them to work for her child She spends hours on phone calls, at appointments, planning surgeries, going to therapies, missing work, and working overtime. She stays up late and wakes up early, researching studies, specialists, information and statistics for each new diagnosis. And with each new condition, she wonders how much more her child can endure — and how much more she can handle. She’s felt alone. Isolated. She’s felt incapable. Out of control. She’s neglected herself. Perhaps for too long. She’s felt five different emotions in a single minute. Yet, she puts on a smile every single time. If she can’t be strong, who can? If she can’t hold it together, who will? A medical mama knows how to fake it until she makes it. She has absolutely no other choice. But for her children, she will do it all. And she will do it over and over and over again, because a medical mama’s love knows no boundaries. If you’re a fellow medical mama, please have hope. Our daughter has defied many odds, and has over come every single one of them. I have hope and faith that she will overcome and defy the odds yet again. Without hope, we are nothing. In the meantime, find what calms your soul. Find your escape. For me, today, it’s writing. It’s my therapy, and these words are an extension of my heart. To all the medical mamas out there: you are not alone. I see you. I sympathize with you. Keep doing your best. You are amazing.

    Community Voices

    Depression has a hold on me

    I’m laying here in bed. That seems to be all I do these days. In less than 3 months I’m going to be 26. The age I’ve been dreading for years. Yes, I’m fortunate that I turn 26 in January so I have basically an entire calendar year still on my parents Insurance. But still that doesn’t make me feel a whole lot better about my life. I’m fighting for Ssi with the assistance of a lawyer, but he says it still could be 12 months before my trial. And even if I get approved, all my specialist are out of state and I don’t know if they’ll be covered/in network. And even if they are, I have no clue how I’m going to pay for the co-pays. Prescriptions alone will drain every cent the government will give me.

    You probably are wondering why I’m complaining. I would be. I have so many diagnoses, I often forget what half of them are. My brain is currently not working so great because I’ve gotten 4 concussions in 8 weeks.
    Add that to Vacterl, klippel feil, pots, dysautonomia, eds, gastroparesis...just to name a few big life just has continued to spiral down hill since freshman year of high school. (Yes 10 years).

    I’m at the point where I feel like my life has been a waste. I haven’t accomplished a single thing I had set out for myself after graduation. I didn’t go away to college, I didn’t get my bachelors, I didn’t get a job, I don’t have my own place, I don’t even have my own car, I’m not married and ready to have kids...instead I’m living with my parents, completely dependent on them, can’t leave the house without their permission and knowing where I’m going. I can’t even fully take care of my pets and my parents constantly are yelling at me because of it. I’m always afraid of getting in trouble or getting hurt/something medically happens. Been single for over three years. I don’t trust anyone because I can’t even trust my own body. I never know how someone is going to react to how I’m acting. Whether it’s acceptable or it’s not enough. I never know if I’m being treated like I’m 5, 15, or 25. And I never know what age my body is going to act either.

    Everyone around me is getting married, getting their dream jobs, having babies, buying new cars and houses, and me...I get asked if I can handle babysitting a school aged kid for a few hours by myself to earn $20 which is likely the only money I’ll get paid maybe even until Christmas, yet I’m still expected to get everyone decent gifts....and pay my way any time I want to attempt to have any kind of a social life.

    It’s no ones fault that my life is like this. It’s no ones fault I cry myself to sleep most nights because I feel so alone and I honestly don’t know how the future can get better. I just don’t want to keep lying here in bed wondering if my life has been a waste especially the last 6 years.