chroniccarenurse

[chroniccarenurse]

Another shooting here in Oklahoma, this time at the hospital. Please contact your representatives at all levels of government and demand reform. It’s already atrocious how much ER and trauma team works on gunshot victims - but yesterday they also had to respond to their fellow doctors and nurses trauma & death in their own hospital. — view on Instagram https://ift.tt/4h1NIpw

[chroniccarenurse]

Vocal cord and airway dysfunction and #ehlersdanlossyndrome - see slides and **my cute one year old for attention 😊** I put a IG story highlight up with some information about these issues. A lot of EDS patients get misdiagnosed with asthma when really the airway and breathing issues are much more complicated than that. If you google search vocal cord dysfunction, airway dysfunction + Ehlers Danlos syndrome you can pull up some good resources and lectures from @ehlers.danlos and @ehlersdanlosuk websites with more in depth information. I mainly want people to know that you can regain your voice, swallowing, and start to breathe and sleep better but it does take time, specialists and an multidisciplinary team approach to rehab the airway and muscles and cords and get things working again. Often ENT, pulmonologist, sleep medicine, speech therapy, allergist/immunologist and neurology are involved. It is very difficult to find EDS/hypermobility syndrome aware health care professionals so bringing some articles and slide decks from other providers can be helpful. For me personally as a patient, speech therapy was very helpful at regaining my voice, as was treating my mast cell activation disorder (allergist) and my eosinophilic esophagitis (GI). I was losing my voice multiple times a year for a decade. It hasn’t recovered fully but it’s definitely better than it was. Also seeing a #registereddietitian was helpful. ENT and pulmonologist was helpful for diagnosis but they straight up told me they went to google and library search just like I did for what treatment to do. Just life with a #raredisease - awareness and research is needed. If you have any recommendations or specialists you have found helpful for these upper airway issues with #ehlersdanlossyndrome please let me know!! #connectivetissuedisorder #edstype3 #hypermobilitysyndrome #mcas #mcad #vocalcorddysfunction #upperairwaydisorder #rarediseaseawareness #eoe #dysphagia #laryngitis #earnosethroat #hypermobility — view on Instagram https://ift.tt/Ku6hoAE

[chroniccarenurse]

Here are some common symptoms of #mastcelldisease - I’ve always had severe ear/nose/throat/respiratory symptoms since I was a kid, but I could never get to the bottom of my GI issues-that was until I started the correct treatment for #mcas! Then many of my GI problems resolved-and when they start up again it’s often an early warning sign before it progresses to anaphylaxis for me to recognize. #mastcellactivationdisorder #mastcellactivationsyndrome #mcad #mcas #ehlersdanlossyndrome #pots #longcovid #longcovidrecovery — view on Instagram https://ift.tt/Yad9SfQ

[chroniccarenurse]

Just a little info on #mastcelldisease this week - because I’ve been having trouble lately controlling my symptoms of #mastcellactivationdisorder. There are a lot of things that can trigger a flare - trying to get it under control this time around has been rather difficult so I think it stems from multiple factors. There is no cure for mast cell disease, it is a chronic condition. Do you know anyone who has mast cell disorder or do you have it yourself? #mcas #mastcellactivationsyndrome #ehlersdanlossyndrome #connectivetissuedisorder — view on Instagram https://ift.tt/msXbKLJ

[chroniccarenurse]

Critical care nursing in Oklahoma - just when some of the intense pressure from the Omicron surge was about to let up, we face threats from these right wing extremist groups/“churches” - these “Pastors” are raising money based off lying to their congregations about any number of things about patients receiving care in the hospital. I can’t even begin to tell you how tired I am of working as a nurse here. It’s like constantly being gaslit from all sides. Nurses have been giving their all in impossible situations (too many patients to be able to give quality care, low on supplies and meds) and then so many people in the community believe these dumb conspiracy theories. What’s crazy to me about believing these lies about how medicine is some left wing conspiracy/somehow political, is that most nurses I’ve met here fit the standard Oklahoma Bible Belt demographic: white, middle class, republican, Christian. I feel like that’s the least likely group to fit these conspiracies. So Oklahomans are just constantly attacking their own. These nurses are so fatigued, burnt out, morally injured-and the people in their churches and communities continue to abuse them and spread lies about them. #okc #oklahomacity #oklahoma — view on Instagram https://ift.tt/EUhnfec

[chroniccarenurse]

— view on Instagram https://ift.tt/3tvNMV7

[chroniccarenurse]

— view on Instagram https://ift.tt/33CzcQJ

[chroniccarenurse]

no beds means no beds — view on Instagram https://ift.tt/3rn07Zh

[chroniccarenurse]

Another December where I was feeling a little bummed no one got me an advent calendar…. but then I remembered, ✨✨I’ve had one all along✨✨ ________ #chronicillnessmemes #chronicillnesshumor — view on Instagram https://ift.tt/3EkG7LY

[chroniccarenurse]

I’ve been immersing myself in immunology and long COVID study since September 2020. Over a year later and we are still seeing so much debilitating post COVID syndromes in many different forms and body systems affected. It reminds me a lot of the chronic fatigue “CFS” / myalgic encephalomyelitis #cfsme syndrome that people with chronic illness have been trying to draw research attention to for years. I am hopeful that research into #longcovid #postcovidsyndrome will also bring new effective treatments for those suffering with chronic #mecfs. A lot of the #longcovid patients I talk to have been to a myriad of doctors and specialists for months and months and have been through a lot of #medicalgaslighting. They come away from visits with diagnoses like ‘anxiety’ or something generic like “you need to exercise.” A lot of these patients have some true underlying disease processes that can be identified and treated, but they are missed because… why?! Why aren’t medical practitioners listening and investigating? 😤😖 They ask their family for help and they get called lazy, or get told they just need to think positive, try some vitamins… or worse, MLM supplement scammers or other ‘health coaches’ try to take advantage of them, selling them $1000s of supplements that don’t do anything. Those of us working in chronic disease will keep educating and keep researching. Just because a condition is rare or doesn’t have a treatment yet doesn’t mean it doesn’t exist. It’s not “all in your head.” — view on Instagram https://ift.tt/3HmrZDM

[chroniccarenurse]

Last night me and my baby boy finished our 35 Mile Breast Cancer Walk Fundraiser Challenge. This is our late night selfie out by the streetlight 💡. We raised $500 for the American Cancer Society towards research and in hopes for a future world with no cancer. Continue reading to find out why I walked: This past year two of my fellow nurses, beloved coworkers, underwent surgery, chemo and radiation to beat breast cancer. In addition, my friends Sarah and Jen are just about done with the last rounds of radiation. I am so proud of their perseverance! I pray for them oh so often. I am still nursing the baby multiple times a day and that has become a time of thoughts and prayers for the brave friends I know recovering from this kind of cancer. I am saddened that in just this year four of my friends were affected by this cancer. Consider donating to the cancer society or volunteering some time in the next few months for your local chapter. Avoid “pink washing” brands and get your donation straight to people who actually help those going through treatments or are doing active research. _________ #breastcancerawareness #💕 #👙 #americancancersociety — view on Instagram https://ift.tt/3m3tvCq

[chroniccarenurse]

Hospital Admin be like — view on Instagram https://ift.tt/3ASZ2vG

[chroniccarenurse]

To the mom with chronic illness: You are wholly worthy to be loved and respected. You are fully accepted and cherished as a mother. You are allowed to grieve the mother you wanted to be but are unable to. You are allowed to feel sad that your body can’t do all the things you want to do for your children. You are allowed to celebrate your resiliency and strength as a mother, and accept praise from your kids. You have gifts and wisdom to give your children that others who do not have chronic illness do not have. You have empathy and a strong spirit to impart to your children. You model vulnerability and transparency. Your children know that it’s okay to ask for help, and they enjoy living in a community of people who support you. In this way, you are against the grain of the cultural norm of solitude, sadness, and isolation. You let others step in to help you and your children when you need it-and this is a gift to them. You understand your children’s pain and illnesses in ways others cannot, and you know how to minister to them in their times of need. You give of yourself sacrificially to them, even when you know it will cost you of your energy and health. You are not a failure. You are not failing at motherhood. You are just taking another path-on another journey that not all mothers have to take. To the mom with chronic illness, you are strong, you are loved, you are worthy of the beloved title of mother. — view on Instagram https://ift.tt/3C1D2yZ

[chroniccarenurse]

Tents in the hospital parking lots and no ICU beds… still… if you’re wondering where we are at with things. ERs are so full we can’t even accept strokes, heart attacks, gunshot victims… patients being sent far away like South Dakota, Indiana, Arizona… Also, people in Oklahoma are overdosing on Ivermectin and going blind and having seizures and liver failure instead of just taking a safe, effective preventative Covid treatment that is free to all. I have a breakthrough Covid case which has been mild and seems just like a cold. Thank God I got my Moderna-as an immunocompromised individual any illness is a little scary, much less Covid. Life as a nurse here has just been depressing lately. I think anyone with common sense who lives here is just feeling sad. It’s all so unnecessary. — view on Instagram https://ift.tt/3yOGues

[chroniccarenurse]

Anyone else do their weekly medication organizer / pill calendar on Sunday nights? 💊How do you set up your medicine for the week? Do you use a separate tray for AM & PM or have a combo one? I’m one of those people who if something isn’t right in front of my face in my house, I’m likely to forget it exists at all. So I like to put my pillbox right where I can see it so I don’t forget. I put my morning box out by the breakfast stuff in the kitchen, and the evening box on my nightstand. The days of the week help me know if I have already taken my meds that day or not. Some medications need to be taken really consistently to work. For me, my allergy/mast cell stabilizers are one of my most important *do not miss* medications. How do you remind yourself to take special medications, like a weekly injection or nasal spray that doesn’t fit in a pillbox? I put a sticky note on my bathroom mirror to remind me. ______ #chronicillness #spoonie #spoonielife #autoimmunedisease #autoimmunewarrior #ehlersdanlossyndrome #ehlersdanlos #potsie #potssyndrome #mcas #mastcellactivationsyndrome #mastcellactivationdisorder #pillorganizer #injectionday #chronicpain #chronicillnesslife #chronicallyill #chronicallyawesome #medicationmanagement #nurselife #chronicallyillnurse #chronicdiseasemanagement — view on Instagram https://ift.tt/3xsTu8B

[chroniccarenurse]

RIP Ebi. I can’t even tell you how many night shifts we worked laughing and laughing reading your posts and stories and memes to cheer us up. But more than that, you had all us nurses backs—especially in 2020 thru all this awful covid sh🏴‍☠️🏴‍☠️. My deepest sympathies to your family and friends … I know they know how much you meant to all of us in the nursing community. — view on Instagram https://ift.tt/3iG9df4

[chroniccarenurse]

#myedschallenge Day 29: Research hopes for our future. I am most interested in research surrounding comorbidities associated with EDS. Why does the autonomic system fail and how can we treat this? Why does the stomach and sometimes intestinal paralysis occur, and again, how to prevent / treat this? These conditions can be deadly. #ehlersdanlossyndrome #edsawarenessmonth #ehlersdanlosawarenessmonth — view on Instagram https://ift.tt/3wIvcHT