Coronavirus Disease 2019 (COVID-19)

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    COVID: A Holiday Interruption

    I was trying to catch up to my neighbors in getting our lights and tree up, and starting to make some candies to give out as gifts. My 6yo had a “stomach bug”, so we kept him well away from the goodies and thought we were in the clear. A couple days later, he started coughing, then I woke up absolutely miserable and couldn’t taste anything, so we got a test. The first positive COVID test we’ve had! I’m grateful that we managed to go this long without it, (though we’ve had nearly every *other* germ pass through, this year). So far it’s about the equivalent of the H1N1 flu that came around about 9 years ago, which was not fun at all. Praying that it doesn’t get any worse, and we can get back to celebrating with others, soon.

    8 reactions 2 comments
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    Thinking about traveling locally and adopting a dog to help depression

    I am 24 years old. I have had depression most of my life. It really became severe when my mom passed away earlier this year. She died expectedly two months before my wedding. I hadn’t seen her in almost 3 years. Last time was summer 2019. I was supposed to visit in 2020 but COVID happened. She also had cancer at the time so my whole family was very cautious about social distancing from her until doctors said she no longer has cancer. I was so happy to hear that but then a week later she died from something else and it broke me completely. I have since been diagnosed with Bipolar disorder as well. My anger is sometimes uncontrollable. I unintentionally get mad for dumb reasons and my husband tries so hard to make me happy. I also am unemployed and looking for work since a year of graduating masters.
    I am very depressed now and feel useless like I have no purpose. I wanted to get a dog but my past experience scarred me. We had gotten one a few weeks after my mom passed and honeslty it was a mistake because I couldn’t even get out of bed to care for it. My husband would go to work and only be home in the evenings. We surrendered the dog back to the shelter we adopted it from. I felt so guilty (still do) but it is a no kill shelter and he got adopted again within a few weeks.
    Now that I have been able to get out of bed for the last couple of months I have been trying to adopt another dog. I have taken care of my in laws dogs for a while in between to help them out and my husband said I was really happy when we had the dog around. I am wanting to adopt again but will do so after traveling. Thing is, it has been hard finding the right dog. My husband doesn’t want a high energy dog or puppy.
    I was also thinking of traveling locally to maybe Colorado or somewhere to get some peace of mind and escape the everyday life where I hardly leave the house.
    I just don’t know what to do anymore. I just don’t want to feel this way. Any advice will help. Thank you for reading
    #BipolarDepression #Depression #tired

    18 reactions 6 comments
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    If You Suspect Seizures, Trust Your Mom Instincts

    Part 1 of 2 My son was four hours old when I first felt what one could only describe as “vibrating” coming from his body. I was high on hormones and have been known to freak out over little things. He had trouble keeping his temperature up, so I wrote it off as shivering due to being cold.

    The pediatrician already gave him a clean bill of health. My husband didn’t seem to notice anything.

    He was a perfect newborn. Barely cried, slept through the night even in the hospital. He was a little small, but we prepared for that. It was a high-risk pregnancy due to me having lupus and being at risk due to anti-cardiolipin proteins being present, making blood clots and miscarriages a severe concern.

    At about two weeks old, I watched him in his sleep, fawning over his perfect face and little toes, when I noticed his limbs were jerking. It was rhythmic, arm, arm, leg, leg. Small and slow, but over and over.

    I was on maternity leave from working as a medical assistant in pediatric neurology with an epilepsy specialist. My nephew also has refractory epilepsy, and I have seizures during lupus flares. So I knew what this was. However, I also knew it could be sleep jerks from dreaming, though I was pretty sure he was too young for that.

    I monitored him, waiting to see if it would happen again. It did. Again, and again, and again. I tried my best to record a video of the event, which was hard, holding a jerking baby and trying to stabilize a phone enough to get a clear recording. Eventually, I captured an event.

    When I returned to work, I explained what was going on to the neurologist I worked with, I told him I knew it wasn’t infantile spasms, but it looked like some form of seizure. I showed him the video, and he reassured me they were nothing more than benign neonate myoclonic jerks. My son was still trying to work stuff out of his system from the transition from womb to world.

    I looked up to this man as my mentor and still do, but something didn’t sit right with me. These jerks were supposed to stop at two weeks, six weeks tops. He’s now six months old, and still, these episodes were happening.

    My son wasn’t hitting milestones. He couldn’t sit up and could barely lift his head. He was floppy.

    “Some kids just take longer; he’s just taking his time.” The pediatrician told me this. Still, she sent out a referral to our local Early Intervention Services to shut me up. The neurologist scheduled him for an EEG.

    For those who don’t know, an EEG is only good if you have a seizure at that moment. They usually only last 30 minutes. Not a lot of time to provoke and capture a seizure. My son’s EEG was normal.

    Then covid hit. My workplace became toxic, not because of the doctor I worked with, he was still excellent, but the manager. The manager told me to go back on anti-depressants (despite not being depressed). I was informed I wasn’t allowed any accommodations for my lupus or Narcolepsy. She took away neurology and placed me in a different specialty that I specifically told her I didn’t understand. She didn’t like how the neurologist and I worked. We didn’t follow the hospital’s rules; no, we cared more about patient care than profit and ensured our patients got the best care.

    After being told I was uncompliant, I had had enough and quit without notice. The neurologist called and begged me to stay, but I couldn’t. Still, my kids were patients in that office, and I still had to go there.

    It wasn’t until his first birthday that we could obtain intervention services. At this point, he was still having seizures. I had to just keep telling myself they were nothing. He wasn’t sitting without assistance, could barely babble, and had consistent GI issues. Finally, EIS diagnosed him with hypotonia, developmental delay, speech delay, motor delay and set up an appointment with the developmental pediatrician, who diagnosed him with Autism.

    He then saw GI, who sent for a swallow study which showed low masseter muscles. He also had problems eating and wasn’t gaining weight, resulting in a prescription for an appetite inducer.

    We switched pediatricians (but still in the same organization), and I convinced this doctor to order labs, which resulted in severe neutropenia. Off to the hematologist we go.

    When we saw the hematologist, another doctor I’ve worked with, he kept going back and forth from “Wow, I’ve only seen a number this low in my chemo patients.” to “Eh, I’m not worried since he is barely sick.” Again, this is covid; he doesn’t leave the house. We left with the diagnosis of autoimmune neutropenia.

    One night while eating, he randomly started screaming, completely inconsolable. He started vomiting uncontrollably. I jumped in the shower with him, fully clothed. When the water hit him, he just stopped. He s

    4 reactions 3 comments
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    I'm new here!

    Hi, my name is TSWS. I'm here because I’ve been disabled from Long Covid for over two years. Articles on The Mighty have been a big help, so I decided to join the community.

    #MightyTogether #COVID19

    5 reactions 2 comments
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    Kenna Krueger, A Chronically Ill Young Adult, Who Lost Her Dream Career and Found Something Better

    After losing her dream career of nursing to her illness, Kenna Krueger talks about her experience finding her true passion in life and starting her own business to help others with chronic illnesses.

    “I knew I wanted to go into the medical field when I was really young,” said Krueger. “In middle school, I discovered that the NICU was a thing, and I absolutely fell in love. And I was like, okay, I want to work in the NICU.”

    While in nursing school, Krueger was diagnosed with gastroparesis, paralysis of the stomach. A disease that has no cure. Diet and lifestyle changes can manage the symptoms for some, but others need surgeries, feeding tubes, or IV fluids and nutrition.

    Krueger got increasingly sick during her final semester and after a trip to the ER, she had a non-surgical nasal feeding tube placed. With a new medical device to help her manage her condition, she went back to her classes.

    “I thought they were going to be so accommodating because if I didn’t go to the ER that day I could have died. And now I have a feeding tube. They’re gonna understand that right? They’re like, take it out, or you can’t finish school.”

    And so she did. Despite her low nutritional intake and debilitating symptoms, she pulled out her tube and worked hard to finish her last semester. Krueger graduated nursing school amidst the COVID pandemic, having had no accommodations or support from her school, now ready to begin her dream career.

    “Places weren’t hiring because it was only central personnel that they wanted. They didn’t want to waste their few supplies on new grads and training. Healthcare was buckling down to fight the Covid pandemic. I’ve got all this extra time, what do I do, then I just started a Youtube Channel.”

    Krueger began her channel with fashion and food videos, but quickly opened up about her story with her chronic illnesses. With a three-part video series, she explained what gastroparesis is and how it affected her. Her channel quickly grew, reaching many others with the same or similar illnesses who felt alone. She created a community.

    Before long, Krueger got a job on a pediatric med surge floor. While she wasn’t working in the NICU, she was still working with kids and babies and doing what she loved. For three months, she worked at her dream job, before getting even sicker.

    “My body was just so tired of everything that I don’t think I can get up and go to work anymore. I think I might actually collapse if I go.”

    Due to severe malnutrition, Krueger was hospitalised. After some testing, she had a surgical feeding tube placed and quit her job. Back at home with a new medical device, Krueger found something called tubie pads. They’re made for feeding tubes as reusable gauze to keep around a feeding tube stoma site. They can be made with any color or pattern fabric and help to bring a little personality to medical devices.

    The existing market for tubie items typically aimed at moms with young kids with feeding tubes. A lot of the styles reflected a younger target market audience with dinosaurs and Disney prints and bright garish colors.

    “I couldn’t really find much in my aesthetic,” Krueger said. “I have a sewing machine. I just have it. I wasn’t that advanced at the time. I’ve only done a few things and I was like I don’t know if I can make it. This looks really complicated.”

    Krueger’s now fiance, Joseph Nguyen, took her to Joannes and they picked out some fabric together. Despite her lack of confidence in herself, he insisted that she could make them herself. So she did.

    After posting a video to TikTok, Krueger’s online community fell in love with her sense of style and creations, with styles ranging from checkered patterns to floral prints, neutral colors to pastels and holiday prints. In May of 2021, she opened her Etsy shop. Every single product launch since then has sold out in minutes.

    “I love what these products are able to do for other people. And I just want to continue to challenge myself in my business as well with creating new things, because I started with just one product. And now I have so many different products that I just love.”

    Her business and social media have continued to grow and grow. With thousands of products sold in her business’s first year, Krueger is helping to improve the quality of life for people with chronic illnesses one tubie product at a time.

    “I love being creative and creating things. It allows me to both take care of my body, but also have a job and help other people. I’m helping people. I’m inspiring people. That’s all I wanted to do as a nurse.”

    3 reactions
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    Diagnosis

    I’m curious: how do you relate to getting diagnoses for your illnesses?
    I’ve only had a food allergy diagnosed formally, and more recently long COVID. Not the migraines, fatigue, joint pain, subluxations, IBS, pelvic instability etc…
    The food allergy was so much work and money and no one was really interested even though it’s rather a big deal to have a food allergy. And avoiding the food trigger has helped so much.
    I recently told my GP about the scalp psoriasis that I had since childhood without anyone ever formally diagnosing it. She never even looked but logged the diagnosis in my file and prescribed the medicine I asked for (for a flare-up).
    I suspect I have hEDS and that would explain so much…but having myself diagnosed takes so much time and energy (I’m chronically fatigued since COVID to the point I can only work remotely lying down, for max two hours a day and that not every day.)
    My GPs (it’s a group practice) seem uninterested in my complaints whenever I turn up. I got to the point where I first read the guidelines for doctors for my complaint and then just tell them what I want. I usually get it as I’m a doctor myself (not practising).
    And also, my blood work tends to turn up completely normal… and even if you can still be diagnosed based on other criteria they tend to call it “possible” this or that which makes other doctors take you less seriously.
    I feel discouraged, should I pursue a formal diagnosis? It would explain so much, but I feel like an imposter when once again I’m told all my test turn up normal…
    What are your experiences?

    7 reactions 5 comments
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    Letting My Kiddo Down 💔💔💔💔💔💔

    Long story short. I have full custody of my kiddo but not guardianship. They don’t live with me. They have multiple health issues. I have multiple health issues. They have therapies multiple times a week. I can’t safely drive. I couldn’t give them the life they deserve due to my health issues. So I made the heart shattering decision to give them their best shot at life. I just found out that there’s a Christmas program they’re in on Sunday. This would require me to go to the church where my rapist attends & since he’s so highly regarded In the church. I’m known as the little girl who lied to get attention. Every time I’ve been there he follows me to the bathrooms. Stops before you get to the breezeway that has the doors. Feels the need to remind me that nobody believed me just like he said would happen if I told. I was 12. I’m mid 30-s now. 🙄🙄🙄 Every one there is two faced & always wants to be all chatty & hug on me. I don’t like these people. They have directly & indirectly betrayed me. I have nothing against church in general. But that one is corrupt beyond belief. It would be about a 3 hour event & then kiddo would come over to my house for 2 hours. The Saturday before this. They will be here for 2 hours. I had to do some grocery shopping today. And next week I need to pace my way through my very minimal holiday baking. I’m sure you guys all know how crucial it is to pace, especially this time of year. I declined due to it being ick season & my health being extra dodgy lately. Which is a total truth. But the unmentioned side of that, too, I can’t keep sending myself into flares bc I keep doing what everyone else wants/needs me to when they need me too. I can do both. Saturday & Sunday. But the cost of that will be a minimum of a week long crash. Which means my baking week I had planned will have to be completely axed in order to sacrifice that entire week to recovery. And since Christmas has a deadline. I can’t push the baking week onto the gift wrapping week. I really don’t have much or anything extravagant planned. It’s just that I have to pace so much & keep up with my daily responsibilities. And try to dodge COVID this season. I’ve had COVID 5 times so far. And each time has lowered my baseline. My baseline, I still haven’t gotten up bc there’s not much more I can “take off my plate”. I have seasonal affective disorder, as well, and that’s where the mental health activities come into play. I just feel like such a failure. I try & I try & I try to make everyone happy & not let anyone down. But the cost of that is that I’ve let myself down & keep damaging my health to do so. I am barely functioning & barely holding my mental health together. I just feel like such a pos mom & human for saying no “because of my health”
    💔💔💔💔💔💔

    8 reactions
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    I'm new here!

    Hi, my name is CobaJstme. I'm here because a long with what's listed, I have also recently diagnosed with Scleroderma,Lupus and still in more diagnostics. Due to COVID my weekly therapy,EMDR therapy and acupuncture came to a screeching halt. Not good to just bam stop EMDR and we were very deep into.Therapist had a baby, which is great. So then she left. My rescue retired bird hunting dog was ALWAYS with me 24/7. Home,work, doctor's. Sadly and unexpectedly she passed. I still have guilt that I should have know and of course all alone in that rollercoaster. Leaving me with only a monthly call for 10 minutes with a lady I never meet. Now she told me last month she gave her 2 week notice. Yes, I have major abandonment issues. ALL of this has been a huge weight and struggle. Chronic, rare and possibly terminal illness took me away from the field I dedicated my life too in June of this year. My safe place..where I was appreciated and needed and loved. I'm now all alone. Husband doesn't do talking well. I'm just so mentally and physically exhausted. Need people who understand in my life. To know once again I am worthy of everything good. I'm ok with working through the daily struggles. I can't do all this alone anymore. Of course all my triggers have been triggered. PTSD! All of it 😞.

    #MightyTogether #Anxiety #Depression #PTSD #EatingDisorder #Grief

    5 reactions 2 comments
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    Getting over being sick.

    My husband and I are getting over being sick. It was probably COVID but we didn't test. The next time this happens I will make my husband get tested and treated right away because he is higher risk. Though this is our second go around and I always seemed to get sicker. This time he got pretty sick and I was a little worried. I got sick like two days after him. This time around the brain fog was/is ridiculous. and fatigue. Today seems better and that is encouraging. My mental health symptoms are kind of bad-negative thoughts about my self. Was kind of triggered right before I got sick. So it's been tough.

    14 reactions 5 comments