medical ptsd

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    How do you bring yourself to dill out an end of life packet?

    I got mine in the mail yesterday just in case I turn critical before I can get to an out of state hospital with a specialist…. I got COVID in May and developed QT Long Syndrome so all psych meds stopped, except Elavil. June I had a stroke that left me weak on one side, not able to write or speak properly, or even more around well. Few weeks later I had a Dystonia episode that almost killed me. Elavil was stopped. My Gastroparesis was continually getting worse since COVID and because my heart meds are not option at this point. I now I have a PEG tube but still pleasure eat some. In two weeks I will be getting a PEG-J to completely by pass my stomach. I am in the hospital more than I am home so it feels like it. All I do is sleep. Life is hard and a long life just isn’t the cards anymore. My end of life packet came in the mail yesterday. Five Wishes. This is my PARENTS know my final wishes and planning a memorial service. It seems so backwards. I am only 33…. How did I reach this point? What did I do or not do? How in the world can I fix this when my state won’t even help me?! No idea how long I have to wait for Houston but my body is giving up and I am afraid I won’t make it to that appt. But I cannot bring myself to fill out this packet. Feels like giving up but my parents need to know these things….. #Gastroparesis #FeedingTube #CriticalCare #scared #how #why #doesitgetbetter #endoflife #longcovid #Stroke #LongQTsyndrome #HeartHealth #MajorDepression #Schizophrenia #Schizophrenic #Anxiety #PTSD #MedicalPtsd

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    Learning to accept my invisible disabilities and my road to becoming a health equity advocate this Disability Pride Month

    I recently have been taking big steps (for me) to accept my chronic illnesses, including applying for disability, publicly identifying as disabled, and starting to speak publicly about my experiences with #medicalgaslighting and #MedicalPtsd that are not uncommon for women with autoimmune and / or neurological conditions.

    I have been extremely isolated throughout the pandemic, and have faced a significant amount of retaliation for trying to hold local hospitals accountable to women, BIPOC and other stigmatized #ChronicPain patients. I have learned so much from the online chronic illness communities, and hope to pay the support and advocacy forward to other multiply marginalized women who are also struggling to get the health care and respect they need.

    I would love to connect with other #ADA and #OCR health care activists, in particular. I’m sharing the first of my advocacy pieces below - reaching out to advocacy groups who will interview you and help publish your story is a great option for others who are also too shy to write for themselves. I hope to gain that confidence in myself over time, and look forward to building a community of support here at The Mighty!
    invisibleproject.org/manisha-gupta-phd

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    Seizures

    In the hospital for an Epilepsy Study...turns out they are non- epileptic. So my doctor comes in and tells me the massive convulsive Seizures- are non- seizures. It was so invalidating, to hear her tell me it's all in my head to read that because it's non epileptic they just lable everything as abnormalities with normal brainwaves... then send you to psych like you are not physically presenting with something they clearly don't have the tools to detect or measure or even analyze. No Research has gone into this- I'm just left here wondering if they are going to keep inducing seizures never knowing when this study will end, and if I'm even being taken seriously because they trulyknow nothing. Nothing except its not the thing they know about. Epilepsy. So, oh well thats it. Hook you up to wires and call it a day, clearly nothing else must be going on if a person convulsive, contorting, spasming and restless in their own skin- their own brain if its not Epilepsy. Based on how they are speaking to me- I feel not. Like is that the only brain condition that can exist- well they decided it is- because their eeg can't figure it out. #inhospital #Epilepsy #presenting #nonepilepticseizures #PsychogenicNonepilepticSeizures #BrainInjury #MedicalPtsd #PTSD #CPTSD #Trauma

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    Today, my friends and community, I’m doing a rare thing and asking for you to lift me up with your support for me today. #ChronicIllness #Pain

    My doctor (PCP) laughed in my face at my treatment-resistant major depressive disorder disabilities last night at my appointment - it was a joke to him! He ridiculed me, demeaned me, and it’s not the first time he or other doctors were not a proper medical professional when I went to them for professional care.

    This one last night did this all while throwing out new physical illnesses names at me that I probably have but needs to be confirmed by bloodwork taken last night.

    So, I’m much sicker Physically now and once again I cannot go back to this doctor and I haven’t yet, in all these many years, been able to find one who is a compassionate human, let alone a professional who knows what they are doing.

    It should go without saying that we deserve to be treated so much better and many of us just are not, and it shatters me for all of us.

    This shouldn’t be in our hands alone to Warrior through because of disgraceful doctors that show us that they are numb and apathetic to what they took a professional oath to do and that they chose to go through many vigorous years of schooling to help us, not make us worse and actually hurt us.

    We shouldn’t have to keep picking up our shattered pieces of ourselves and putting ourselves back together time and again because there are way too many people, including medical professionals, who do not have a moral compass. #MightyTogether #ChronicPain #Insomnia #ChronicFatigue #MultipleHealthChallenges #PTSD #Trauma #warrior #MentalHealth #mentalhealthmatters #MentalHealthAwareness #MadeVisible #Support #Depression #ChronicDepression #MajorDepressiveDisorder #TreatmentresistantDepression #Anxiety #MyCondition #MajorDepression #MedicalProfessionals #MedicalPtsd

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    Acceptance Is Inevitable #ChronicIllness #Depression #MedicalPtsd #Anxiety #Ostomate

    As I sit here in the early morning hours I’ve truly accepted “my reality” I will never be who I once was healthy, carefree, spontaneous. My body is now unreliable. I’ve ran from this truth for almost 8 years, moving, running, doing things that weren’t beneficial to my health, physically, mentally or emotionally. I’ve suffered loneliness, severe anxiety, depression through all my medical journey to wellness. I’ve been given carrots of hope only to be let down. I’ve endured 4 major surgeries in four years, life altering surgeries. I suffer medical PTSD from all the doctors who dismissed me, made me feel like a number instead of a person, at 87 pounds many doctors said I wouldn’t make it yet not “ONE” of those doctors helped me. I don’t have an eating disorder I have a malabsorption/malnutrition disorder. So here I sit, finally accepting my life as it is. A bag hangs off my side (an ileostomy), it dictates much of my days. From what I eat, when I eat, the amount I eat, what I drink, the amount I drink, when I drink, bag leaks, bag changes (usually an hour just to shower and change my bag)….. it’s all an inconvenience graces with depression, anxiety, chronic pain, diversion proctitis, all quality of life issues. I’ve finally come full circle to embrace “my reality” of my life. It doesn’t take away the loneliness, the depression, the anxiety or the pain by accepting “what is my truth” but it does bring me a peace to finally stop running from myself. A peace to accept what is and fully be present in the life I have, no matter if it’s full or limited.
    I don’t like taking pain medication, anxiety medication, antidepressants but I’ve accepted this path as my own individual path of life. It DOES NOT make it any easier from day to day I still struggle with everything. BUT accepting myself, loving myself in spite of my struggles has finally brought a peace I’ve missed for almost 8 years. I do not have a support system, I battle this very much alone, which makes me sad sometimes yet I’ve learned to be content with just me, knowing I have to be my own best advocate even when I feel like giving up. For those of you who struggle in similar ways, I pray one day you can do as I have done and accept “ your reality”. Love yourself in spite of your struggles, give yourself permission to be gentle with yourself, give yourself the kindness and compassion you wish others would give you. Acceptance of your circumstances is truly freeing. Love and hugs to everyone facing their own battles today. Be strong and love yourself first.
    XOXOXO

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    Place that takes me away from all the rest

    #Holdingon #MedicalPtsd #safeplace #Photography

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    Suffering lately

    So tired...
    &no ability to try to say much more then that in my current state.

    I really like this piece written by @sarakvittor_poetry though that popped up in my IG feed today. It feels relatable right now.

    On that note... I think I'm going to go and sleep some more of the day away because after spending the majority of my last 4 hours awake crying since I pried myself out of bed last, I find myself feeling beyond exhausted once again.

    But hey, I'm still alive right... so that's gotta count for something...
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    #ChronicPain
    #ChronicIllness
    #MentalHealth #MentalHealthAwareness #Depression
    #PTSD
    #CPTSD
    #MedicalTrauma
    #MedicalPtsd
    #Suicide
    #SuicideIdeation
    #Emotions
    #Support
    #NotOK