Methicillin-Resistant Staphylococcus Aureus

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Methicillin-Resistant Staphylococcus Aureus
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    Community Voices

    My chronic pain is causing me mental and physical dark depression from constant agony day in day out

    my name is Jay and a lil background about myself I'm 39/ M I live in South Florida I was envolved in a motorcycle accident in January of 2020 which has left me with chronic pain. I had 4 broken ribs a broken left leg spiral fracture of fibula and tibia I've had 4 different surgical procedures to remove rods, hardware, and screws and due to catching a MRSA staph infection it left me with severe chronic ostromylitis causing unbelievable pain I have been

    2 people are talking about this
    Community Voices

    Synthetic Antibiotic Offers New Hope Against Resistant Bacteria

    <p>Synthetic Antibiotic Offers New Hope Against Resistant Bacteria</p>
    Community Voices
    Community Voices
    HKMH1

    Feeling #lonely and depressed. Scared I’ll always be alone romantically.

    #lonely
    I'm 33, single and have only had one long term
    relationship, 3 years, but he didn't love me, and would
    say really unkind things that made me feel not good
    enough.
    Prior to that relationship I dealt with
    alcoholism in my immediate family as a young child and
    teen. So I've always had very low self esteem. I was
    teased very badly for the entirety of secondary school
    because I turned to food as a comfort and was 24 stone
    by the time I left school at 16. My Mom then became
    very ill and spent many months in hospital with MRSA
    and septicemia, and didn't recognise me or my brother
    because she was so ill. It ended with her having her
    right leg amputated. She was unwell for years.

    I went to do my A Levels at 21, got down to 15 stone
    7, was happy and doing well..the month I
    completed my A Levels I was diagnosed with stage 4
    Hodgkin's lymphoma and had 6 months chemotherapy
    and lost my hair and dealt with everything else that
    entailed. That obviously had a huge impact on my
    mental health and I honestly don't think I've been the
    same since.
    I met my ex boyfriend not long after all of that and
    stayed with him for 3 years, but as I said it wasn't a
    particularly healthy relationship.

    My Mom then became very ill again as a result of
    neurological painkillers she was given for the phantom
    pain in her amputated limb, she was taken off of them
    too quickly which caused grand mal seizures for years.

    After that I decided to go forward for weight loss
    surgery, I had a vertical sleeve gastrectomy, and lost 10
    stone, however I did put about 1.5 stone back on in the
    initial lockdowns as I had only had my op under a year
    prior and my new lifestyle was not ingrained yet.
    Then obviously covid happened which has caused most
    people a lot of stress.

    I have a job in a retail store that I enjoy, when I can cope
    with my mental health. I am also doing a degree in art
    and design, including learning ceramics and
    printmaking which I really love! I often get anhedonia
    though and so can struggle with it when I'm not well.
    Since being diagnosed with cancer at 23 I've been
    certain that I want to marry and have children of my
    own. My brother is married and has a wonderful wife
    and two gorgeous children. So I have a lot of joy in my
    life, I also have a very good relationship with both of my
    parents dispite the alcoholism in my childhood.
    I have some very good friends and I know I'm very
    blessed to have all of these things.
    I want so badly to find 'my person' though and it
    genuinely worries me that I never will.

    Met someone at work last year who I liked and he
    seemed to like me, but all he wanted was fwb which is
    not something I can do, I get too attached and it's not
    what I want. I then went on about 4 dates with a guy
    who I just 'clicked' with, we talked all the time, he
    seemed to be as interested as me and then he just
    disappeared. Came back said he'd made a 'huge mistake' then did it again. It hurts like hell and I'm so confused. He’s now blocked me on everything. #lonely

    2 people are talking about this
    Charlie Bickel

    Ehlers-Danlos Syndrome Is a Life-Altering, Serious Disease

    I’ve always had something going wrong with my body. Whether it was repeatedly getting injured as a child, being the clumsiest dancer, running on less energy than other kids, ear infections, or tummy aches, I was always experiencing some sort of medical inconvenience. Despite having a laundry list of random symptoms as a child, I was still able to relatively function like the rest of the students my age. Everything changed the second I turned 18. After starting university with a full-ride scholarship, I started experiencing a dramatic increase in chronic pain, dizziness, fainting, gastrointestinal issues, nausea, depression, severe allergies, and debilitating fatigue. It was as if becoming an adult had unleashed the Kraken of debilitating, declining health problems that would never end, ultimately leading me to drop out of college. At age 20, I was diagnosed with fibromyalgia, chronic fatigue syndrome (also known as myalgic encephalomyelitis or CFS/ME), and irritable bowel syndrome (IBS). For the next seven years, I dealt with doctors unwilling to look beyond those conditions, seven years of no improvements, seven years of continual decline in health, seven years of more and more symptoms added, and seven years of more medical neglect and invalidation endured. By the time I was 23, I wanted to give up, and by the age of 25, I could no longer avoid the progressive nature of my confusing health and needed to fight for answers. At 27 years old and after over a decade of my health falling apart, I was finally diagnosed with Ehlers-Danlos syndrome, hypermobility type (hEDS) by a geneticist. Because of my hEDS, I experience many complications and comorbidities such as postural orthostatic tachycardia syndrome (POTS), small fiber neuropathy (SFN), GI issues, chronic pain, chronic fatigue, and plenty of other illnesses involving damn near every letter of the alphabet. All these years of not understanding my body, of wondering if all of my random symptoms had anything to do with each other, if this was in my head, etc. were finally answered. Ehlers-Danlos syndrome is the beast I have yet to tame. Like many zebras before being diagnosed, I knew very little about hEDS. I knew there was more than one type of EDS. I knew that EDS caused soft, stretchy skin and extra bendy joints. I had no idea the number of complications, other parts of the body, and additional symptoms that people with EDS experience. Because EDS is a group of inherited syndromes that are caused by genetic mutations in one’s collagen or collagen-like proteins, many people assume it just affects the skin and joints. That is not only a myth, but a dangerous assumption that can lead to years of neglect and invalidation. Because collagen is found in the vast majority of one’s body such as in our skin, ligaments, bones, organs, blood vessels, gums, and even our eyes, it makes sense that EDS would be a condition that affects one’s entire body. Although hEDS is the most common type of EDS, that does not mean it is necessarily less serious or less severe. While the vascular type of EDS (vEDS) is the most life-threatening, there are many serious and potentially life-threatening complications that can occur to anyone with any type of EDS. EDS is a spectrum disorder meaning not only are there over 13 different types, but that the level of severity, combination of symptoms, and lived experiences are going to be different from person to person even if they have the same type. Some people with hEDS are able to walk without mobility aids, are able to work, etc., while others may be unable to get out of bed and struggle with serious and potentially life-altering complications. I wanted to list some of my daily experiences and symptoms because of how debilitating, dangerous and poorly understood Ehlers-Danlos syndrome can be. We are not just bendy. We are sick. Here is a glimpse of what it’s like living with my genetic disease: 1. I am constantly getting injured. There is not a single day in which I do not sublux at least one joint. I am also prone to dislocations. These subluxations and dislocations have caused me to have many permanent complications such as bursitis in both hips and arthritis throughout my body. I struggle to use my hands due to my hypermobility, tremors, injuries, and joint damage, and often rely on using voice to text on my phone because of it. I struggle to walk or stand for longer than a few minutes without being in constant pain or risking injury. 2. I am always in pain. Even if I may not be experiencing pain directly in my bones or specific areas of injury, I am experiencing significant amounts of musculoskeletal pain on a daily basis. Many people with hEDS are often initially diagnosed with fibromyalgia (myself included) because of the prevalence of chronic widespread pain, sensitivity to touch, and pressure points. 3. I have chronic fatigue. And no, I do not just mean tired from not sleeping well for a few nights. My chronic fatigue causes brain fog, short-term memory issues, cognitive dysfunction, depression, lethargy, limited mobility, poor sleep, and a litany of other manifestations. If I am in pain, I can often push a little bit past it, but when I experience severe fatigue, I cannot function with a brain running on internet as old as AOL dial-up. It’s as if I am being run by a backup generator with limited and selective functioning. 4. I am constantly dizzy. Because of collagen’s prevalence in our blood vessels, many people with hEDS also have POTS. Because our veins are more stretchy, we are more prone to blood pooling, orthostatic intolerance, and various manifestations of dysautonomia/autonomic dysfunctions, POTS being the most common. Because of this, I am dizzy any time I am not laying down or resting. I am prone to fainting, falling, black spots in my vision, nauseousness, lower blood pressure, tachycardia, vertigo, and even migraine and neck/shoulder pain. POTS may not be life-threatening, but is by far one of the most debilitating illnesses I experience thanks to my hEDS. I have spent roughly 75% of the last eight years mostly in bed or at home due to the severity of my hEDS and POTS that comes from it. I rely on taking beta-blockers and I have a port surgically implanted in my chest so that I can have IV fluids on almost a daily basis to decrease the severity of my POTS. I also need to use a mobility aid (most often a rollator walker) any time I leave the house due to my chronic pain and debilitating dizziness and fatigue. 5. I am constantly struggling with gastrointestinal complications. I have IBS that fluctuates dramatically between extreme constipation and extreme diarrhea that is still being investigated by my doctor. I have chronic acid reflux (GERD) that led me to develop a serious complication known as Barrett’s esophagus that causes my esophagus to incorrectly grow intestinal tissue over areas that have been damaged from chronic acid reflux. I will need to get an upper endoscopy every 3-5 years for the rest of my life to prevent/monitor any potentially cancerous growths. I had a hiatal hernia by age 19. I had my gallbladder removed due to gallstones by age 21. I also currently have a protein deficiency due to malabsorption. I have to take medications daily for the rest of my life and routine maintenance testing to look out for any additional damage over time. 6. I have nerve damage. A lot. Because of my constant injuries and general joint instability, I have small fiber peripheral neuropathy that has progressed so much that it has already spread to my hips and made my nerve fiber density in my lower legs and feet almost obsolete. I struggle with nerve pain down my spine and numbness and tingling down my entire left arm frequently due to shoulder and neck instability, subluxations, and dislocations. 7. I have horrible headaches that often turn into migraines on almost a daily basis. Migraines are overwhelmingly common amongst those with hEDS for many different reasons such as CSF leaks, craniocervical instability, chronic pain and tension, fatigue, etc. I have to get injections on my forehead, scalp, neck, and shoulders every three months and it does not solve the problem completely. 8. I am allergic to what seems like almost everything. I am allergic to the vast majority of plants, molds, fungi, dust, etc. native to the area I live in. I am allergic to many perfumes, chemicals, dyes, adhesives, etc. I am allergic to most foods that I eat, and my symptoms abruptly change in type and severity and to what trigger. I am prone to chronic hives, itchiness, congestion, sinus infections, sore throats, diarrhea, nauseousness, and even sometimes swelling and my reactions are always unpredictable. 9. I heal poorly and slowly. On top of my hEDS, I have an auto-inflammatory skin condition called hidradenitis suppurativa which causes acne, cysts, and tunnels on areas of my skin close to my sweat glands that are inflamed. Because of my hEDS, my acne and cysts in those areas of my body (such as under my breasts, my inner thigh, buttocks, etc.) heal poorly, leading to atrophic scarring, open wounds exposed for too long, causing me to be a chronic staph carrier that requires me to take antibiotics long term to prevent serious infections such as MRSA. I have atrophic scarring, unexplained stretch marks, slower healing time after surgeries, and weaker, softer scar tissue. 10. I have many reproductive issues. I struggle with pelvic floor pain, heavy periods, painful cramps, nausea, diarrhea, etc. when menstruating. I’ve had IUDs for the last seven years because I cannot handle the severity of the heaviness and pain from menstruating. I also struggle with bladder issues ranging from phases of incontinence to even bladder retention. While there are many other symptoms and complications I have from my hEDS such as neck instability, rapid hearing loss, TMJ, etc., these are some of the main ones I deal with on a daily basis. Because of the progressive nature of EDS and its complications, my experience at age 27 will not be the same 10 years from now, and I will have more and more issues over time. EDS is more than just hypermobility and stretchy skin. Many people with EDS require mobility aids to move around, lifelong medication management, regular physical therapy, and sometimes surgical interventions. We can be stuck at home, in bed, or even hospitalized long-term. Some of us even have feeding tubes due to severe gastrointestinal complications. EDS is not a one size fits all illness. There are so many symptoms, complications, comorbidities, and levels of severity making no case the same. We cannot let EDS be continuously misunderstood, poorly researched, invalidated, underdiagnosed, or neglected. Whether someone experiences mild EDS or life-threatening, we all deserve to have our stories be validated and treated thoroughly and accurately. We are more than just your flexible party tricks. We have a debilitating, complicated disease that can lead to a low quality of life that we deserve to have improved and cared for. We are zebras who deserve to be heard and seen in a stampede of horses.

    Community Voices

    #ChronicIllness I am feeling very beat up the past several days, held hostage by the many health issues I face every day. I don't know why, but I think it would make me feel better to be seen. I feel quite invisible most of the time.

    It's a long list, so please forgive me. Thank u so much for providing a safe place for me to 👄 about my diagnoses, and where I can hopefully also be supportive of others.

    Here goes:

    Depression

    Anxiety

    Medical PTSD

    OCD

    Autonomic Neurological Disorder

    Frequent Balance Problems, Dizziness and Falls

    Orthostatic Hypotension

    Involuntary Movement in Extremities

    Irritable Bowel Syndrome

    Fibromyalgia

    Chronic Fatigue Syndrome

    Insomnia

    Sleep Apnea

    Elevated Blood Pressure

    Type 2 Diabetes

    Diabetic Neuropathy

    Arthritis of Spine

    Degenerative Disc Disease

    Herniated Lumbar Disc

    Total Knee Replacement (left)

    MRSA, led to Sepsis and Septic Shock

    Sinus Migraines

    Thank u so much. Have a blessed day.

    17 people are talking about this
    Community Voices

    CURING HUMANITY

    <p>CURING HUMANITY</p>
    Community Voices

    The Answer to What Else Can Go Wrong!

    Shortly, before Thanksgiving I developed an infection in my left foot and left forearm. They both cultured for Staph A and the foot also grew MRSA. The forearm was also infected with a fungus. My Simponi Aria In fusions were stopped immediately.

    Shortly before Christmas my Crohn’s ‘s Disease and RA started to come out of remission. A new painful, scaly rash appeared on my elbow. Yes, it was determined to be Psoriasis. My primary said that and I have been hoping he was mistaken.

    I saw the rheumatologist today. I can restart my Simponi Aria Infusions next week. But, I came home with to more diagnosis: psoratic arthritis and autoimmune vasculitis. That made my day! My rheumatologist said he wasn’t surprised about me getting psoriasis and genetically the are in the group with Crohn’s disease. He feels the RA is an in an of group.

    Will never you have it, what Santa brought my for Christmas

    #RheumatoidArthritis #CrohnsDisease #PsoriaticArthritis #Vasculitis

    2 people are talking about this
    Community Voices
    Community Voices

    It Is What It Is

    I used to be a tad more open minded to other opinions.

    I still try to be but I find it harder.

    And if you find me difficult and unrelatable, I get it. It’s not you. Really, it’s not you. It’s me.

    And perhaps it’s the company I keep. Nothing is worse than a tribe of special needs parents reminding you that health is important, wearing a mask is important….nothing ruins your mojo more than special needs parents who have to run home to oxygen, suctioning, feeding tubes and bottles of purel. Special needs parents are not very sexy.

    And bereaved parents?

    Get. Out. Of. Town.

    Never, ever talk statistics about how many children could die of COVID to a bereaved parent. To a bereaved parent, we beat the odds. Anything can happen. Don’t try to rationalize life and death based on what you saw on Fox News; especially if its not yours.

    When was the last time you attended a funeral and sat in front of a baby casket? Never?

    Then count yourself lucky and STFP.

    Am I angry? Hell yeah.

    Stop talking about things you think you know and I hope you never ever know.

    But really. It’s not you. It’s me.

    Of course I seem scared to you. My stories are your worst nightmare. The outlier to your statistics.

    But I am not scared.

    I was scared when my daughter seized for the first time. After the 20th time, it was old hat.

    Cause it is what is it is.

    I was scared when she caught MRSA multiple times and it took two weeks to get a bacterial infection under control. I was scared when I was sent home with two IV antibiotics to be administered two hours around the clock through her PIC line.

    I was scared when I performed CPR for the first time. I hope I never have to perform it again.

    But hey.

    It is what it is.

    160,000 dead in five months. But its not your Mother, your Father, your Brother, your Child.

    Is it?

    So you can ignore it.

    It is what it is.

    Until it’s yours.