Natalie Maria

Sammi Haney

Disabled Actress Sammi Haney Co-Stars in Netflix's 'Raising Dion'

Hi! I am Sammi Haney and I’m 9 years old. I play Esperanza, a wheelchair user like me on the Netflix series “Raising Dion” which will be released on October 4. Esperanza is a bright classmate of Dion who has brittle bone disease like me. A brilliant artist who is wise beyond her years, she looks out for Dion in an endearing manner, and though it takes a while, Dion grows to realize she is his best friend. “Raising Dion” follows the story of Nicole Reese (Alisha Wainwright), who raises her son Dion (Ja’Siah Young) after the death of her husband Mark (Michael B. Jordan). The normal dramas of raising a son as a single mom are amplified when Dion starts to manifest several magical, superhero-like abilities. Nicole must now keep her son’s gifts secret with the help of Mark’s best friend Pat (Jason Ritter), and protect Dion from antagonists out to exploit him while figuring out the origin of his abilities. I wanted to use what little star power I will have to be an advocate for the disability community, so I started my own t-shirt company, Disability Shirts, to provide themed apparel for people with disabilities (and their parents and supporters) in a mission to spread awareness, acceptance and love. I wore one of my shirts on the “Raising Dion” show. My dad does all of the designs for the shirts. I was born with osteogenesis imperfecta (OI or brittle bone disease). I was diagnosed in the womb, and even though there was a planned C-section, I was born with 19 detectable fractures in various stages of healing. I have broken hundreds of bones from simple things like tossing and turning too much when asleep (when I was younger) or simply sneezing too hard. My OI doesn’t just affect my bones, but also my teeth, lungs and much more. I get infusions to make my bones thicker, but they are still brittle in the same way that thicker Styrofoam is stronger, but it is still brittle. I also have telescoping rods in my arms, legs and back, which straightened all of my bones which were curvy from multiple breaks, and allows my bones to heal better when they do break. I have had to wear many medical braces and have had lots of surgeries, but I never let that get me down. I have brittle bones and live life to the fullest! I hope people can see past my wheelchair and see me as a person. When my parents told people about me being on a Netflix series, it was disappointing that some of them assumed it must be a show about my medical condition, as if that is all they could see about me, and as if that is the only kind of show people with disabilities can star in. My parents were told I got the part because when the casting directors watched my audition tape I made everyone in the room laugh, and they loved my sassy personality. My wheelchair is not what got me the part. Hopefully by being on Netflix’s “Raising Dion” I will be able to help remove the stigma that people with disabilities cannot star in a major drama series.

Community Voices

I don't know how to want the future that's available to me #

I have ulcerative colitis, PCOS, and psoriatic arthritis, diagnosed in that order between the ages of 12 and 32. The onset of psoriatic arthritis came right when I was about to try fertility treatments. I ended up losing my job because I couldn't manage the workload. I went back to school, graduated, got a different job, and still planned to try for a baby when things "settled down."

Over the past year, I've had multiple complications related to my illnesses and treatments. In July, I was hospitalized for a kidney infection, and when I had a CT scan to check for kidney stones, they found a spot on my liver.

In the last week, I lost another job due to my many absences, and one day later, discovered from a follow-up CT scan that the spot on my liver has grown. I have to get more tests, but the doctor suspects a hemangioma. While it is most likely harmless, pregnancy can cause it to grow and become symptomatic.

I'm 39 now. I have known for all this time that getting pregnant was possibly a long shot, and that there would be risks involved with the medications I take. I have known that my time to make this happen was growing short. This was the final nail in the coffin. I made the difficult decision that I will no longer pursue trying to get pregnant.

A part of me is relieved to end the limbo, but I have always wanted kids. I can withstand chronic pain and illness. I can withstand financial insecurity. I don't know how to live with this. I wouldn't say I'm suicidal, necessarily - I don't want to harm myself - but it's hard to make myself get up in the morning. Nietzsche said (I'm paraphrasing) that you can survive almost any "how" as long as you have a "why" to live. I just gave up on the "why" that has sustained me up to this point.

I don't want to die, but I also don't want this future. I don't feel like I CAN want it. My grief for the babies I'll never have is crushing. I never imagined a future where I wouldn't be a mom.

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Why It's Expensive to Be Chronically Ill

If you are not in the chronically ill population, I bet you get annoyed when you have to go to the doctor for a sinus infection, or the flu, or something fairly typical, and you have to pay a co-pay and then maybe a portion of your prescription. You miss a few days of work and you may or not may have sick time, so your paycheck might get docked. If it’s something more extreme like a broken bone or pneumonia, it really starts adding up! But you don’t have to pay for extra supplements that help make you feel normal (whatever “normal” is), and you don’t have to buy particular accessories to help you get through the day. Those of us who have ongoing illnesses spend so much money on trying to feel OK. For example, I am experiencing hair loss right now. I have a $25/month supplement right now, but it’s not working, so I’m looking at one that was recommended to me that’s $60/month. That’s specifically for my hair, which is half the volume it used to be, and it’s always been thin. I also have supplements for dry skin, adrenal function, and then regular run-of-the-mill fish oil. All of this adds up to about $70/month, before the more expensive option for my hair, which would bump it up to just over $100/month. Believe it or not, this is a small amount compared to what others spend. Because of back pain, I have heating pads stashed everywhere. That back pain is often pretty bad, so I can’t just bend over, move the furniture and unplug it. It’s just so much easier to have one at my office, one on my bed and one for my couch. So I have three heating pads. Going for $20/pop, I’ve spent $60 on heating pads. My job requires that I move around from day to day, so I don’t spend that much time in my office. This means that I get the disposable heating pads, as well as the lidocaine patches. They usually go for $5-6 for a package of three patches. Even if I use them carefully, I end up going through at least a package a week, so now we’re up to $20/month in disposable heating packages. I have met my out of pocket max and my deductible for the year (anybody care to guess how much that was, because it’s a lot) so my prescription medications are fully covered for the year. But I can’t always take prescription medications to control pain because the side effects can cause drowsiness. During the day, I just can’t afford that most of the time. So let’s say 50 ibuprofen, the generic brand, costs $2 and 50 acetaminophen costs $3. That’s 12 doses of ibuprofen and 25 doses of acetaminophen. If that lasts a week, (during a flare, this is a generous assumption) then we’re at $22/month, plus another $5 for the Pepcid to help with inevitable upset stomach. Approximately $30/month in over-the-counter pain killers. For a disease that causes unpredictable, or heavy, menstruation, then it’s necessary to stock up on tampons and maxi pads and pantyliners. This is easily $30/month as well, because a box of tampons is $5 or so, and it might last a week, but it’s usually less than that, five days maybe, so it would be more like six boxes a month. Eating well genuinely makes a difference in how I feel. So I pack my lunch, and I cook a lot. I don’t eat $1 frozen pizza (even though I miss it because Totino’s is delicious). So my grocery bill reflects quality produce, dairy, whey protein powder, eggs, coconut and almond flours, and nothing at all processed. So a quick sandwiches with chips? I don’t get to do that. I make my bread with gluten-free organic ingredients. A bag of regular all-purpose flour is maybe $2, but a bag of coconut flour is $4 and almond flour is more than that. Every meal has to factor in this consideration. I don’t remember what my grocery bill was before, but it’s about $400/month now. That’s just for me, as my husband travels during the week. I think it used to be $160/month. I averaged about $40/week. That was back in my Totino’s Party Pizza Days. I don’t know how to factor groceries into the overall monthly expense of chronic illness, but it’s significant and bears discussion. We also have to take care in our clothing. The bottoms of my feet often ache so I can not wear cheap shoes. My daily flats cost $200, but they’ve lasted for two years and still have a lot of life left. My weight can easily fluctuate 10 pounds overnight, so I have clothes in two different sizes so that I always look put together, instead of looking like my clothes are baggy and unprofessional. There are so many diseases that cause foot pain and weight fluctuation. This is really common. Let’s talk about hardware. Being chronically ill will take a toll on your senses. Being estrogen dominant can change the shape of your eyeball, so glasses are almost a given. Certain autoimmune diseases causes hearing loss and insurance often doesn’t cover it. The last one I saw cost $2,500 but my coworker spent $4,000 on hers. Then, TMJ or generalized anxiety (or a million other things) causes jaw pain, so then we get a retainer too, and dental insurance won’t cover all of it. There are more “accessories” — special bras that go for $100, back braces, ankle or knee braces, it goes on. There are so many things that insurance doesn’t cover, but we have to have it, so we have to spend our own money on it. So there you have it. Those are the items that I, personally, have witnessed and dealt with. It adds up. Remember that these are things that insurance doesn’t cover, so this doesn’t include co-pays, prescriptions, whatever insurance has worked out (usually a percentage of the procedure or blood test or imaging or whatever is ordered). So we’re not just struggling with feeling bad or adjusting to the “new normal” that we’ll be adjusting to for the rest of our lives. We’re also spending a lot of money, and missing a lot of work in the meantime. It’s hard to be chronically ill, and it’s expensive to be chronically ill. I’m interested in anything I missed. Please point out your expenses in the comments. Let’s be really thorough here for the sake of family members and friends who read The Mighty.

Community Voices

Sometimes it takes months or years to get diagnosed. What would you like to say to someone in the waiting process?

Do you have a favorite quote to share with someone struggling with their health, waiting for a diagnosis? A favorite song? Words of encouragement or advice? Is there something that helped you when you were waiting for a diagnosis that may help them as well?

Let's remind the undiagnosed that they're not alone in their journey, that they have a community of people here on The Mighty waiting to encourage them during this season of the unknown.

#MentalHealth #RareDisease #Undiagnosed #ChronicPain #ChronicIllness #Support

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Paige Wyant

22 Secrets of People Who Take Prednisone

Article updated Feb. 21, 2020. What Is prednisone? Prednisone is a corticosteroid medication often prescribed to help suppress the immune system and reduce inflammation in the body. It’s commonly prescribed for people with autoimmune conditions like lupus, rheumatoid arthritis and Crohn’s disease. Amy Calabrese Donihi, PharmD, BCPS, FCCP, associate professor of pharmacy and therapeutics at the University of Pittsburgh School of Pharmacy, previously told The Mighty, prednisone helps raise the level of the stress hormone cortisol in the body. Elevated levels of corticosteroids help reduce inflammation in your body. What Are the Side Effects of Prednisone? While prednisone can be quite effective in controlling symptoms, it can also cause a variety of side effects, including weight gain, increased appetite, excessive sweating and mood swings. For some, the benefits outweigh the side effects. “These side effects should not scare people away from taking it, if indeed they need to take it for their chronic disease,” Donihi said. But for others, prolonged periods on the drug can start to take a physical and emotional toll. Because prednisone can carry stigmas, and because doctors can only tell you so much about how it will affect you, we asked our Mighty community to share some of the secrets they don’t often tell others about taking prednisone. We hope this helps you make an informed decision — but please consult physicians and other patients before making a final call on taking or not taking prednisone. Here’s what the community shared with us: 1. “I hate how I feel bloated. It’s a terrible feeling when you’re trying to lose weight – you eat right, you try to exercise when you aren’t in agonizing pain – but when you go to the doctor you haven’t lost anything.” 2. “Mentally it makes my mind a roller coaster. I have major mood swings. One minute I’m OK, the next I’ve burst into tears. One minute I’m mad at nothing, the next I am fine.” 3. “I’m grateful for it. It seems like all I really say about it is how much I hate it. But in reality, without it I would not be alive today! Yes, it has some not-so-fun side effects, but there are ways you can teach yourself to cope over time. The good outweighs the bad!” 4. “Hair loss on [my] head, but I gain a nifty mustache!” 5. “I ended up with horrible localized seizures and an extreme hypertensive crisis that landed me in the ER. Couldn’t stop taking it, as it’s one of the only treatments for my autoimmune disease, so we had to work out the highest dose I could take without seizures.” 6. “I go on two-to-four-week bursts for asthma and it’s the weeks that follow that are worse. Breakouts, red inflammatory patches on my skin that react, redness across my face, aches, fatigue. I call it the ‘Pred Hangover.’ Sometimes it can take a month for the inflammatory/autoimmune response to calm and for me to feel human again.” 7. “It makes me feel like a million bucks. I go from couch surfing due to joint pain to exercising again. I overexert myself and find out the relief was only temporary. Then I eat everything in my refrigerator and it takes me a month or two to lose all the weight I packed on in one week!” 8. “Sweating and being so hot all the time. Even if it’s winter, I’m pouring sweat. Non-stop sweating.” 9. “Prednisone always gives me insomnia. It’s a double-edged sword… It can make me feel great but then I eventually just come crashing back down. I am always exhausted after completing a course.” 10. “It can make you really depressed. When I first got diagnosed with Crohn’s disease I was 8 and was on a high dose for almost a year. I remember just crying and crying for no reason and feeling awful emotionally for no reason. And it can be hard to talk about that side of things because when you get depressed you tend to withdraw.” 11. “I don’t like to admit I actually love it, even with all of the horrible side effects, because every time I’m on it I feel almost normal. It sometimes makes me feel jealous of so many people who get to feel healthy and ‘normal’ every day.” 12. “It’s a tough reminder that I truly have no control over my own body.” 13. “Blood sugar ups and downs that, along with weight gain and moon face, do not in any way match what you consume.” 14. “It made my breasts really sore. It affects my already unbalanced (from pain/fatigue) sex drive.” 15. “[I have to run] to the bathroom and pee constantly. Sometimes I’m not fast enough.” 16. “When I did take it, it was like another world. I wasn’t hurting. I [wondered], is this how everyone feels? Is this real? It was the best week of my life! I wish it was safe enough to take all the time. I miss feeling ‘normal.’” 17. “The withdrawals are almost as bad as the side effects while taking it. I have a rash, acne (I never get pimples!) and headaches. It also affects my mania pretty badly.” 18. “I take it on top of my other psoriatic arthritis meds for flares and the cravings and food ‘needs’ can resemble what we hear of pregnancy. Hard, practically unavoidable cravings. Salt-sweet-salt-sweet-sour-etc. And not getting those foods creates an entire new level of grump.” 19. “[I feel like] I’ve got PMS the whole time – heightened sensitivity to any emotion, body swollen to what feels like double its size, insatiable appetite, hot flushes, wild dreams, bad skin that no product can fix.” 20. “I usually won’t talk about how it helps me so much with a daily low dose because I always hear about how terrible it is.” 21. “It causes bruises to randomly show up, so I end up looking like I got hit by a truck. Everyone stares at me and, if I’m with a male friend, he gets death glares.” 22. “I look in the mirror, and I don’t recognize myself. Physically or psychologically.” What has your experience been like with this medication? Let us know in the comments below.

The Grief of Not Being Able to Have Kids Due to Chronic Illness

It has been almost two years since I wrote an article for The Mighty about not being able to have kids due to chronic health issues. I wish I could say things have gotten easier. I thought they had for a while, but the truth was that I just hadn’t been exposed to a similar situation since then. Last week, a very dear friend of mine gave birth to a baby girl. I was so excited and so happy for her and her partner, and I asked if I could come visit them in the hospital, and they said they would be glad to have a visitor. I went to the store and bought some Pampers, baby wipes and a onesie that said “Girl Power.” I bought a card and a gift bag. I looked through all the baby clothes and was blown away at how expensive they were, even at a discount store. (The price of the diapers blew me away, too.) I went over to the hospital. I saw my friend and her guy and their sweet newborn baby. I saw the baby enjoy sleeping and eating and falling asleep while eating. (Baby really didn’t do much – newborns rarely do, in my limited experience!) The baby was beautiful and I was so happy for her young, healthy parents. I spent the next day and a half convincing myself that my husband and I could, and should, have a baby of our own. I’m in pain? I’ll deal with it. Sleep deprivation? I’ll deal with it. (Note: neither of these things are realistic.) Pooping and spitting up and all that stuff? I’ll deal. Pregnancy requiring me to go off nearly all my meds? Uhhh…scary, but I’m willing to try. No money? Lots of couples have kids on limited budgets. (Never mind that we can’t make ends meet right now and it’s just the two of us.) No space in our apartment? Baby can sleep in our bedroom, at least while they’re little. I was desperate. I was ready to sacrifice everything. I am almost 40 and can practically hear that biological clock pounding down its countdown in my ears. I have always wanted kids. I love babies in particular – I find them totally fascinating. I have seen my nieces and nephew at all ages and stages, though (the oldest is almost 15 now), and there have been amazing things about them all. I have so much love in my heart, and I just want a child to give it to. I give a lot of love to my husband, but there’s plenty left over and I don’t have a place to put it! I have lost so many of my dreams to chronic health issues. Grad school and a career are the first to come to mind, but they are far from the only ones. There are so many things I’ve had to give up since fibromyalgia struck me at age 19, and so many things I will probably never do or have. I do not want it to rob me of this one, too. My dad and me when I was a baby. My husband and I sat down and talked on Sunday. He tried to give me a reality check, but it didn’t work – I was in denial. Then he dropped a bomb on me: he told me that he could not handle having a child. He has several health issues and a tremendously stressful job. He picks up a lot of slack for me since I can’t do certain household chores. He doesn’t give me grief about it, but if he had to make diaper runs too, it would just be too much. I spent the rest of Sunday and all day Monday crying. The only thing that stopped me from crying away the day on Tuesday was having to take medication for a headache, which dulled the emotional pain as well – so much so that I had a therapy session and talked about this and didn’t cry and even felt oddly detached. Today, I am putting one foot in front of the other. I’ve put dinner in the slow cooker, watched the ANTM finale, done some knitting, put away some laundry. My heart still aches like crazy, though. I want to end this cycle of grief I seem to go through every time I spend time with a baby. I am thinking about doing some volunteer work with kids (not babies, though – that would hurt too much and defeat the purpose). If we are ever able to move to a bigger place, we might like to become foster parents. I suppose my point in writing this is to let anyone else in the same boat know they are not alone. Maybe we can work through our grief together. There must be some way to get through this without feeling a deep sense of regret for the rest of our lives. I haven’t found it yet, but I will keep searching and trying new ways of dealing with it. In the meantime, I am determined to continue visiting my friend and her baby when I can. I may hurt afterward, but I don’t want to regret not spending more time with them, provided they want me to be there.