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    Venting - Sorry. So stressed and too much anxiety

    I am just venting. Sorry... no disrespect or anything. Just need it off my chest. It is written as if I am talking to someone as it was easier that way to get my thoughts out. I am mid anxiety attack so hopefully it makes a lil'sense haha. ******

    I never hid my blood was messed up AND I never had an issue with it for 7 yrs...I had no warning. No signs or symptoms... I never lied to you. I never cheated you or hid anything. I was supportive. Constantly giving to you. Defending you. Helping you. Loving you.

    When I got sick in December, you said and did things that meant the world to me. You promised right to Sunday, that we were okay - you would help me in my surgery recovery. You would not let me deal alone.
    Your mother says I am to leave you alone. You say now not to rely on you for anything and that you need time to work out why you have been sad and angry for several months long before I had medical crisis. Knowing I need you now - knowing I am beyond terrified. You turn your back. After you asked your job to talk time off to help me. Why?
    You say I didnt do anything wrong, has nothing to do with me being sick -

    But how can I not wonder if it is? I am a chronic overthinker. I am emotional now as I am stressed and scared. I cannot sleep without seeing the blood everywhere. I cannot sleep without a nightmare anymore. Is there someone else? Did I do something? Why am I not good enough? Why? Why show love in front of others but not me in private? I am in love with you - are you in love with me still? I miss you.

    Why am I more worried about supporting you now; when I am the one who could die in a moments notice? Why am I bawling and thinking of your wellbeing?

    My anxiety has me physically throwing up and chest pains. I almost went to hospital it was so bad yesterday.

    Go ahead. Take your time but why push me away if I am not to blame?

    I hear your words but see different actions. I would go to the end of the world for you. Your mother says it will be a long time but won't tell me what is happening and you won't tell me. I am dumb enough to wait for you. Even after I will be dealing with my surgery and recovery alone.

    I feel so alone, lost and defeated. I can't close my eyes without seeing that day replay. When the hospital resusitated me, I was happy to have your kisses and love with me. I am sorry I am in pain, terrified, emotional and not thinking clear... I appreciate you. I am sorry. I am so sorry I almost died. I never meant to traumatize you if it did. I didnt know it was happening til I woke up in the ambulance. I am sorry. I am so sorry.

    #hemoglobincrash #hemorrage #ptsdnightmares #Anxiety #Surgery #scared #Loneliness #whywontthepainstop #nauseous

    12 reactions 3 comments
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    Post surgery question ? #ChronicIllnessEDS #EhlersDanlosSyndrome #ChronicPain #MedicalZebra

    I have made it 2 weeks since my ankle surgery to repair a few tendons and ligaments. I got my stitches out today, 30 total. I now have steri strips to continue healing of the incision. I have a few smaller blisters along the incision and one larger on my ankle bone where I've been having more pain from my walking boot. Surgeon said it's normal and nothing to worry about just to watch it. Has anyone had this happen ? #ChronicIllnessEDS #EhlersDanlosSyndrome #hypermobileehlers-DanlosSyndrome #Surgery #Mobilityaid #Zebra

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    I missed you all so much! 😭

    Thank you to everyone who sent me sweet messages over the last month wondering where exactly I disappeared to. Admittedly the past four weeks were not something I planned for!

    Between Christmas and New Year’s I was admitted to the hospital for a week and had to have emergency surgery — it was a big one (my 15th!) that resulted in a total restructure of my ear canal and bone cavity, as well as the removal of some of my skull.

    But I am slowlyyyyy reemerging from my recovery hibernation (day by day, you know how that goes!) and am dipping my tired toes back into work here at The Mighty.

    I’ve missed my coworkers so much, but more than anything I’ve missed having the energy to interact here and support you all in your own health journeys. Thanks for holding down the fort so splendidly in my absence!

    📸P.S. I tried to take a lot more pictures during my recovery this time around and it’s been really healing in seeing how far I have come from day to day. Perspective is something that’s easy to lose sight of. This photo was from the day I was admitted through the ER (but pre-surgery).

    #CheckInWithMe #ChronicIllness #Spoonie #ChronicPain #RareDisease #Disability #MentalHealth #Surgery #Recovery

    44 reactions 12 comments
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    Need a hack #Surgery #ChronicIllnessEDS #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #Hypermobility

    Hello all I am in need of some hacks I had surgery on my ankle. I am in need of a shower or sort of shower. Waking up drenched in sweat from from pain is making going many days without a shower hard and making me feel worse overall . I tried sitting on bath stool with my leg out to avoid getting wet but that just messed up more joints and took what little energy I had for the day. Any one have any good waterless soap or shampoo they like, dry shampoo only works for so long and just makes my hair feel gross and tangles. Walmart or Amazon links would be amazing thanks kitty attention (turtle) #MightyPets

    9 reactions 3 comments
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    #Surgery

    right now I want to say I hate my surgeon because he gave me nerve damage in the main nerve in my back how do I know this I failed my EMG test which means I have less or no muscular activity in my legs

    1 reaction 2 comments
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    Over it all #Boss #noonegetsit #Mastectomy #Recovery #Surgery

    My boss called today six weeks after mastectomy and diep flap reconstruction (bilateral) not to ask how I am hod forbid, to get my address for a bouquet of flowers or anything. HE WANTED TO KNOW WHEN IM COMING BACK for the love of god I need a nap from the exertion of showering! My wounds are still debrieded daily! I need love sympathy and support not stress
    My job is physically taxing, mentally exhausting and emotionally draining
    No just no

    2 reactions