Coronavirus Disease 2019 (COVID-19)

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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?

    5 reactions 3 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”
    💔💔💔💔💔💔

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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
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    Post covid blues

    Hey everyone! I caught covid for the 2nd time two weeks ago and it was brutal. Thankfully I'm not feeling sick anymore but I'm super drained and exhausted from it. I've been extra tired... can't do much cleaning or cooking at the moment and I feel so guilty that my partner has to do it all. They don't complain about it but I can't stop apologizing and feeling guilty for not helping. Any tips for dealing with these feelings?

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    Life…what a joke

    I recently spent a month in Texas to see my first granddaughter be born because we knew she had a heart defect. I returned to a husband who has drastically changed. I have fibromyalgia, Ehlers-Danlos syndrome, POTS, Autoimmune Hepatitis, chronic shingles, cervical radiculopathy, IBD, depression, and anxiety. I have worked on and off through my adult years. I haven’t worked this time in about 3 years, mostly due to Covid but also bc of my issues. I pee myself a lot and sometimes will even poop myself. And when I do poop it’s exhausting. It’s intense 20/10 pain and I sweat and I often end up puking. Sometimes I have puking spells that don’t stop until I go to the er for IV meds. I have PTSD and I have horrible nightmares that I’m even on medication for but they still happen, they’re just not as terrifying and I don’t tend to remember them. So, knowing all this, which is what’s been known since the day we met, he said it didn’t matter. He would love me no matter what. I get back to Florida from this trying and emotional journey in Texas and my husband suddenly says I need to get a job and I need to clean the whole house and have sex with him more. I get that money is tight bc I do the bills. But we both agreed it would be really hard to keep a job when I have to call out all the time. I guess he forgot that part. So now I either leave him and have nowhere to go or I stay here and torture myself cleaning up after the messiest man ever. He didn’t clean a thing while I was gone. Nothing!!!! It was disgusting and I’ve been going room by room. About the sex part, at 22 my uterus and everything else prolapsed. I had to have a hysterectomy and bladder sling and I have mesh. My vaginal canal was drastically shortened during a revision surgery bc a cyst had formed in the scar tissue in my vagina. Sex hurts me 99% of the time and rarely feels good. All this time I thought he was really supportive and understanding and it turns out he can’t handle it. “Because everything’s on him.” But it isn’t. I do a lot for us that he chooses not to see. I’m doing my best and it’s not good enough. So I’ll force myself to work so I can start saving money so I can leave. And start over yet again. No more relationships. I just want to be alone where there’s no expectations of me.

    6 reactions
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    COVID-19 recovery for the health care ecosystem

    We've been discussing the future of health care for over two years now, imagining how it would develop and the tremendous changes that would take place between now and 2040.

    The COVID-19 epidemic has drastically altered the future of healthcare, seemingly overnight. The health care ecosystem and the patients it supports must navigate a strange world of virtual doctor visits, remote working, and a supply chain plagued by severe shortages.

    Other than the pandemic itself, consumer behaviour may be the most important factor in the future of health care. The resurgence of the industry will be influenced by consumer behavior. Consumer behaviour during the recovery phase is likely to change significantly due to grief, uncertainty, and fear, which increases the need for counseling.#

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    You’re Not The Only Chronic Illness Warrior

    Part 1 of 2 “I can’t, but thanks for the invite.” The sentence echos on my lips, spoken to more people than I remember. I don’t know about you, but I don’t like to say no. I thrive on adventure and exploration. I’m a social butterfly.

    And yet, I’ve said so many no’s I never wanted to. I wasn’t always this way. But when I first got sick as a young teen, I watched as “out of sight, out of mind” became a reality in my life. Friends slowly melted away.

    Part of it was because my lifestyle changed. My friends were going to dances and sports games. My community was gathered at church potlucks. But I lay in bed, counting the dots on the ceiling, wrapped in my yellow-y cotton blanket, straining to hear my family’s footsteps and conversation.

    Part of the friendships disappearing simply came down to a difference in experiences. Chronic illness changed my priorities and my perspective on life. I didn’t care so much about grades when I was fighting for my life, and it became increasingly challenging to connect with my peers even when our paths crossed.

    The Reality Is, We Are Not Alone

    After nine lonely months staring at the ceiling, I needed to change tactics. Maybe my local community wasn’t coming to me and I wasn’t able to go to them. But surely someone somewhere had similar experiences. Surely I wasn’t the only teenager with a chronic illness!

    I started to reach out online — on platforms very similar to TheMighty. Soon people started saying “Hey, this is wild, but . . .” and stories began to show up in my inbox. It was amazing. The more I shared my story, the more others shared their stories, and before we knew it we didn’t feel so alone anymore.

    I remember looking in my chronically- ill friend Mindy’s blue eyes, and in that moment we both felt seen. More than that, we both knew someone understood. Truly understood. It was — is — incredible. As this realization began to sink in, I did something a little . . . outrageous.

    I got some friends together, and we put together an online conference (before COVID made them cool). A teenager in her bedroom — sounds like a fun little project, right? But so many people with chronic illnesses I met were lonely and desperate for connection. Many more than I ever realized.

    Hundreds of people registered to attend that first event. Watching the live chat was a healing balm to my heart as I saw chronic illness warriors interact with each other, cheer for each other, and comfort each other. As the conference came to a close, I hastily put together an online forum because none of us wanted the connection to end. Seven conferences and thousands of chronic illness warriors later, that chat has grown into a community of people who understand.

    What a beautiful thing! People who know exactly what it’s like to be passed from doctor to doctor. People who have turned down invitations, sat on the sidelines, and needed help grocery shopping. People who have felt the shame, fear, anger, and grief. People who have stared at those dots on the ceiling day after day, wondering if they’ll ever get to start a career, be a parent, or even just walk.

    I longed for such a community during so many lonely nights of painsomnia, crying, and begging God for help. And friends, it exists. There are so many people who walk through chronic pain and chronic illness every day. Like Rachel over on the Diamonds conference community, who is parenting four kids while navigating Dysautonomia. Or Esther, a young adult who found herself facing POTS as she finished college. Or Cassidy, whose dreams are in limbo as she handles EDS, POTS, MCAD, and Gastroparesis with her service dog Heidi.

    In 2018, the CDC reported that 51.8% (129 million) of average adults had been diagnosed with at least 1 of 10 chronic conditions. That’s mind blowing. As I’ve recently joined a new community, I’ve found that statistic to be true in the friends I’m making. Sitting at a table of four friends from church recently, two of us were chronically ill. Of the eight people I see most often, none of whom are related to me, five have a chronic condition. And I didn’t even know that when I met them and began building a friendship!

    Before I got sick, I had no idea what a chronic illness even is. There’s a reason we call them “invisible illnesses.” And yet, the longer I lived with a chronic illness, the more I realized just how common it is.

    Let me say it again: you are not alone!

    Someone Else Is With You Too . . .

    For those of you who share my belief in God, there is another reason we are not alone.

    Even if we were alone in our experiences, even if no one else in the world experienced the illness we have, even if no one has asked the same questions we have — we would still not be alone. It is my belief that there i

    5 reactions