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Hi, My name is Cheri. I reside in Wisconsin. My Son passed away on 4/19/2024.He was an Addict for many years. He was to be admitted to a Recovery Facility 2 days after he died. He smoked a joint .It was laced with Fentanyl. He was on a ventilator and in a coma for two weeks. He did not do anything purposeful in that time. We moved him to Hospice so he could go comfortably. This is absolutely the most horrific thing a Parent can go through. Idk what to do all I do is cry cry cry. He was just such a Special person. So charismatic, loving& kind& thoughtful. He was also So so funny. I miss answering the phone and him just start singing 'You are my sunshine ' or Mama Mia my Mama. I could use some prayers and any suggestions to cope. Thanks in advance 😊

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My Wife has "Alzheimer's Like" Dementia caused by Strokes

My Beautiful Wifeycritter, Cheri, has suffered a combination of Strokes. It began when I woke the morning of January 2nd, finding her on the Floor between the Bed and her Closet. We got her to the Hospital, against her wishes, because it was obvious she was no longer Herself!

The 1st Hospital would not listen to us about her Blood Gas and COPD Exacerbation that caused her to be place in a Chemically induced Coma, Twice before in a Local Hospital nearly a decade ago. We had to FIGHT them to even get the CT Scan and MRI done - Then once the MRI results came back they could no longer deny she had a STROKE - Not just ONE, but three and the most recent had hit her Right Parietal Lobe near the Prefrontal Cortex, and she lost her Cognitive Abilities and can no longer recall Passwords, phone numbers, addresses, etc.

Cheri is a former Regional Franchise Training Manager for Skipper's and Winner of numerous Awards for Excellence in her career, Former Owner of Ice Cream Store, Floral Shop, Etc. One of the most Intelligent women I have been with, and was a huge help to me, as I battle ADHD, Autism Spectrum, Borderline Personality, Dyslexia, and she helped me overcome my last bout of Suicidal Depression. She taught me how to use Audible and Podcasts to help me LEARN and navigate some major Learning Difficulties. And, in less than 6 months time, she has been reduced to a Childlike State of Mind. Her mentality ranges from about 6 or 7 yr old to young adult... (Earlier today she said she felt about 18).

All of this was compounded by the fact that we were living in substandard housing which had become overrun with Rats, and no help from the Management. Our home was in need of being condemned and was far below any Health Codes.. Our Daughter, Ashley moved us out of the Trailer while Wifey was in the first Hospital. We now have a very cute apartment in a very secure 55 and Older Bldg.

Cheri was moved to a Rehab Facility that only made her Delirium more pronounced. She declined Mentally while she was in care at that Facility and moved to another Hospital... They ran numerous tests on her that all came back INCONCLUSIVE, and she was finally released to come home, and we tried to establish care for her.

On 15 March, she was taken to Good Samaritan Hospital, where she has been since and had an extensive battery of tests HERE IS WHAT WE KNOW - She has Acute Metabolic Encephalopathy - Damage to her Right Parietal Lobe, near the Prefrontal Cortex resulting in Alzheimer's Like dementia... We STILL do not have the COPES Assessment done, to get her set up with IN HOME care... They wanted to Discharge her tonight, and we FOUGHT IT - Because NO ONE has trained us on how to Navigate her Dementia, or how to Redirect her when she is in some Delusional Reality and petting her purse and talking to it like a cat, or seeing and talking to people her daughter and I cannot see or hear...

I am reaching out for someone, anyone who can offer insight and help, because I am losing my Life Mate, a piece at a time... Every time she has a set back, a little LESS of her comes Home to me. I have times when I sit in the car, for an hour or more waiting for the TEARS to pass, after kissing her Goodnight at the Hospital...

If she has deteriorated this much in less than 4 months, will I even have another six months before she REQUIRES Assisted Living, (In which case, I will become Homeless, because I cannot make the RENT here ALONE), or worse case, she becomes incapacitated to Stroke, or Crippling Dementia??

I am looking for a Face to face Support Group, Locally, and I am going to request Weekly Counseling for MYSELF to be have Guidance and Direction and something or someone to Help ME...

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I LOVE LIFE

Today is International SPS Awareness Day. I dedicate this article I wrote for l’orient le jour, a french publication, to all the people who have inspired me along this journey.#StiffPersonSyndrome #RareDisease

I suffer from a very rare condition that affects one or two people per million called Stiff Person Syndrome.

Almost four weeks ago, I came out of the Intensive Care Unit ALIVE - that word has never had such an impact in my life.

On the eve before the 12th of February, feeling weak I told my husband not to worry if I took time to call him post treatment. My mum asked me if I needed her to drop me, but I asked her to pick me up instead because I told her I did not feel ok.

It’s like I knew…

Post treatment, my blood pressure went so low that I passed out and after various attempts to wake me up I was taken to the ER and a few hours later to the ICU. I was soon diagnosed with Septic Shock due to four different bacteria in my blood. In twenty-four hours my condition became critical, and my dad asked my husband to travel immediately back to Beirut from Africa.

From these eighteen days, my memories are the ones that my subconscious created as I was delirious, in and out of consciousness.

I dreamt of life, and how much I loved it, of music and dancing. I heard my parents and husband’s voices and gentle words of love without being able to respond.

Their love and my strength woke me up and I was alive again and able to communicate.

I love life, my body and its strength is undeniable despite all of my sicknesses.

I am thirty-seven years old and neither Stiff Person Syndrome nor its treatments will defeat me.

Whatever defines you hold on to it, do the things you love, live life because it is truly beautiful, live every day and appreciate it.

Life, you brought me back I will not disappoint you.

To all my loved ones, this is for you!#delirium #Coma #BackPain #MightyTogether #StiffPersonSyndrome #JuvenileDiabetesType1 #OrthostaticHypotension #Gastroparesis #Dysautonomia #Arthritis @angesdavis

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I’m just tired of having a #Headache / #Migraine for 5 years

I had a #Stroke 5 years ago and when I woke up from my coma I had a #Migraine and I had it ever since. I’m just #tired of it.

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Keeping up w/ meds, pharmacy & insurance can be grueling. Yet over time I’ve embraced them. What is your relationship w/ your meds? Love? Hate? Both?

Recently I've had a change of perspective about all my meds, doctors, specialists, hospitals, psychiatrist, therapist, physical therapists, pain clinics, caseworkers, and the many types of treatments I get. I have come to be thankful that I have them all and no longer resent them, no longer resent how physically and emotionally draining they can be, no longer resent the days I have lost when I could be working…or playing! I stopped venting and complaining about them in the bulk of my conversations, and making them the focus of the (often limited) emotional energy I do have left many days.

It took awhile and some really tough and scary times…surviving two pandemics: being HIV+ in the 80’s, and many serious complications from it; and then decades later I got Covid that had me taken by ambulance to the ER with over a dozen symptoms, and having to learn how to walk again in rehab; heart surgery; multiple concussions; being in a coma for 4 hours after and accident; mental health hospitalizations…including the arrests I had during two manic episodes; and struggling with addiction. It took really stepping back away from it all and then suddenly I came to find a new perspective, came to the realization of how blessed, loved…and yes, lucky I am. I now choose to see all I deal with currently as tools, resources, and opportunities that keep me alive, help me heal, stay balanced, and I can now see how they are leading me to good health and having the opportunity to thrive.

Yes, I do have well over three dozen doctors, departments, and health care providers in my phone, and probably have seen or worked with over 20 this year, averaging 4-6 health appointments a week for most of the last year. And yes, I take 16 medications, and right now I have a few challenges that have created limitations every day, needing the assistance of mobility devices, needing rides most places and when I drive now using handicapped parking spaces. I stopped feeling sorry for myself and playing the victim and instead choose to smile and laugh during health appointments, joking about the crazy, big, obnoxious migraine glasses I wear everywhere and sharing how I can't wait to run a marathon with others who I meet that are also struggling with physical health limitations. But am I joking? Do I really see myself running, rock climbing, kayaking, going camping and getting back on my favorite hikes again? I choose to hold on to that hope and believe I can overcome the obstacles in my path.

I am realistic though. I also accept that this might be unlikely, and that I will have many of my current health challenges the rest of my life. Yet I give thanks every night for another day, the blessings I do have in my life, the relatively good health I do have in spite of it all. I choose to make sure to observe those around me at the hospital, when I go for (only) outpatient appointments, see how some are in worse shape than I’m in, hear the helicopters land at the hospital, and see the ambulances come to the ER, knowing how scary that can be! I observe other people at Physical Therapy with their head in a cage, or without a limb, I walk past the mental health ward that was my home (twice), am humbled when I read many posts of what others go through here in MHC and remind myself it COULD ALWAYS BE WORSE. With this new perspective, comes gratitude and appreciation…and I choose to smile.

Now to be honest this is a work in progress, I still can wake in the morning and feel sorry for myself after I get out of bed with four body parts hurting before my first step. I can get depressed due to having so many med changes recently. I have even called Mom in total fear before I went for a biopsy, while waiting for news from an ultrasound of something else, and having just found out a procedure I had recently might need to be repeated… and all of a sudden I realized how overwhelmed and scared I was, broke down and cried. Mom “caught me” as she has so often and uplifted & encouraged me. Then a funny thing happened later...I broke out laughing at the magnitude of it all, then walked out of the doctors with my cane and funky glasses and remembered it HAD been worse…but I’m still here!

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How do you feel when you see your pill bottles? Take your meds every day? Go to regular doctors appointments? I invite you to shift your perspective too… if you haven't already…because even if nothing changes with your health challenges, how you feel about them can make all the difference!

#MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #Selflove #Selfcare #BipolarDisorder #BipolarDepression #ADHD #ObsessiveCompulsiveDisorder #COVID19 #Migraine #Headache #HIVAIDS #PeripheralNeuropathy #BackPain #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #InsideTheMighty #MightyTogether #DistractMe #MightyMinute #MightyQuestions #conqueryourmind #RareDisease #BrainInjury

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Lost cause

My world has been upside down since the age of 24. Actually ever since I was young, growing up with an abusive, neglectful mother and no father. I lost my second born child to his father one day when he just up and disappeared with him. I couldn’t handle the pain of loosing my beautiful baby boy so I began to self medicate with opioids and I eventually met Crystal Meth, also know as Methamphetamine. On April 8th of 2013 the Drug Enforcement Administration kicked in the door to my home and, come to find out, I was in the presence of some very bad individuals who I thought were friends but these individuals were not my friends but only my enemies. My so called “friends” told the DEA that I was a methamphetamine cook and that I also sold and trafficked the drug. I still to this day have no earthly idea how or what makes crystal meth but the detectives took their made-up story and ran with it, charging me with all kinds of crazy crimes that I never committed. I paid a big sum of money to a lawyer for my drug charges due to the circumstances and seriousness of the “crimes” I faced and started my case while being held in county jail. I was in county for a matter of 3 months when my lawyer tells me that if I take my case to trial that I would be looking at 22 to life in prison. I was young, scared and unknowing of any kind of laws or punishments so I decided to take a deal and plead guilty to crimes I never committed. I then spent a 120 day drug treatment program called Gateway in a prison named Women’s Eastern Reception Diagnostic and Correctional Facility. I served all my time and when I got released from custody I had to begin a 5 year probation sentence while abiding by all laws and restrictions during my sentence. Back then probation and parole had this thing called 30 for 30 Good Time, which means for every thirty days a convict shows good behavior and passes their drug test they receive 30 days knocked of their sentence. I did so well that I was release from the Department of Corrections 2 years and 6 months early. That day was April 1st, April fools day, can you imagine the surprise on my face? I was no longer on probation. Although I was charged with SES probation and there for I will be a felon for the rest of my life, I was incredibly stoked. After my prison experience I was the happiest and healthiest I had ever been. I went on outings with my daughter all the time, I worked a full time job and I took care of everything that I was responsible for. I became human again. I was always overwhelmingly, but extraordinarily happy. That is until I was introduced to methamphetamine for the second time. I got so far away from myself during the second relapse that I lost sight of who I was and why on earth I was alive. I sadly lost my mind and attempted to commit suicide by overdosing on my prescribed psychotropic medication. A family member called first responders when she found my lifeless body on the floor. When the paramedics arrived my heart wasn’t beating and my body temperature was low. Surprisingly the paramedics brought me back to life and began to rush me to a near by hospital where my heart stopped again. I was lifeless for 5 minutes until a miracle took place and I was revived again. After that I was placed in a medically induced coma where I remained for the following three days. When I was finally released by the doctor I was placed in a psychiatric facility for a few weeks to get my mental stability back. I was able to return to what little family I had and to my beautiful daughter after I lost 7 months of life with her. I swore I would never again take my life for granted but then my world was back to being troubled after my mental health took another toll on me and I returned to using, for the THIRD time. I have lost 3 of my precious children to CPS because I cannot get clean and I believed that if someone more mentally healthy than myself could give my children a better life and raise them the way they deserve then who am I to continue drug use and try to fight for my children and put them through way more than they ever deserved. This is my life as we speak. My children are gone I’m about to lose my dog, for a positive change, and I’m currently using. I’m more lost now than I’ve ever been so I’m working on bettering myself and my life by looking into schooling, moving to a sober living home and discontinuing the use of all drug’s including marijuana.

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Let’s tal about #SuicidalThoughts

Hi hi, Andy here again, this time I brought you with my partner shadow **Suicidal Thoughts** for this week in my journal, no body would care if I would disappear or crashed my car and get myself in a coma for example, in this case my very favorite demon #Anxiety and I were talking about my mom get frustrated with me and not being sufficient with nothing in my life and professional and said: you have to go and never go back to this house again and then all the crash accident happened and then the coma. Some people took me to a hospital and then call my emergency contact which was ex boyfriend who lives in Spain and took am airplain came back and took care of me and everything.
And the I woke up…
Start crying and tremble like a panic attack and remember that maybe I’m all by my self and that I don’t deserve to be here

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New

I am new. I have a seizure risk since May 2014 from cranitomy. I have never had a seizure. I am on 1 anti epileptic medication. I also follow PTSD forums here. I had bacterial meningitis of my brain from chronic sinusitis and access left temporal lobe. I almost died. I was incubated in a medically induced coma septic multi organ failure. I had to relearn everything.
#Epilepsy

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Odd contemplations.

One of my childhood friends passed in 2019 at the age of 26 from slipping into a diabetic coma in his sleep.
My relationship with this friend was complicated by the feelings involved between us. I fell in love with him at one point. I never did find out how he felt about me. I was too afriad to ask him out. Every year around the aniversary of his death. I contemplate our past. The things that we said to one another and just the horrible things I did as a scorned teenager. I loved this boy. And I changed a lot of the things about myself to align with his tastes and likes. I quit liking country music and embraced rock and roll. I listened to Three Days Grace, Breaking Benjamin, Disturbed and countless other bands of the early 2000’s. I started watching anime, dressing and styling my hair to become more Emo because his sister told me that was what he liked.
We got into a fight once because I started going out woth a guy he didn’t like and he told me that I was fat and ugly. He said that I had a mustache and I was too “manly” looking.
On one level it broke myself esteme. It seems pretty stupid to me now, a 14 year old girl taking value in what a 15 year old boy had to say.
And taking those things to heart.
I was angry throughout my teens. I hated myself. I hated how I never fit in in highschool. I hated that my best friends found other friends that they got along better with. I hated that I had emotional walls put up between me and everyone else. I hated that I would never be asked out by anyone. I hated that I was always angry.
I got to university and I did a completly different experience. I went to a small liberal arts University and discovered so much about myself. I was allowed to blossom and become who I was on the inside. I was allowed to experiment with my sexuality, the way I dressed, and my art. It was probably one of the most liberating experiences of my life.
Inside though I struggled with my self-worth. I drank pretty hard and had unprotected sex with so many people.
I did eventually get the help I needed.
When my friend died, it was painful. There was the inital grieving, sadness and loss.
But in the years after, I endured another transformation of the mind. I’m almost 30 and I’m finally learning to say “f*** what everyone else thinks I should be doing”. I’m settling in to farming and raising cattle. I’m doing what I want to do.
Not what someone tells me to do. I guess what the moral of my ramblings is that don’t ever comprimise on yourself. Find space To Be yourself.

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I feel like I’m going to die soon and have kind of accepted it. #Undiagnosed #MentalHealth #PTSD #SuicidalIdeation

When I was 16 I had begun my first episode of severe food poisoning that would go on to change the bacterial climate of my stomach for the next four and a half years (present day). I had been misdiagnosed with panic disorder prior to my first of many er visits (which inadvertently lead to me developing the disorder), and have seen every doctor you can imagine, save these important few: neurologist, gynecologist, and cardiologist— all of those which I urgently needed to see and still haven’t yet seen. I’ve been laughed at by multiple doctors and told that everything is in my head (I would insist I didn’t feel well), and my pcp at the time (when I was 15) even motioned to my mother that I was crazy (they would then go on to refer me to a gastroenterologist a year later at my discretion after telling me I didn’t need to see one. Since I have been diagnosed with these stomach conditions: esophagitis, GERD, hiatal hernia, ibs-c and abnormal stomach lining and mucusa). Nowadays my blood pressure is constantly skyrocketing or at it’s lowest points (was diagnosed with orthostatic hypotension, neuropathy, chronic migraine and insomnia when I’m convinced it’s also POTS and even more). My body is constantly in fight or flight mode and has been for all those years because I still live with these conditions and my family). It’s now to where, when I move too quickly or stand my chest feels like it’s going to pop (I become short of breath and black out for moments at a time). I’m not on any medication, and I feel like death is approaching (my sister has EDS, POTS, dysautonomia and Lupus and wasn’t diagnosed til she moved out..). My mother laughed at me when the doctors said I was fine at 15 because she too is a medical professional, a nurse. But that day I learned she was something more: a narcissist. She always tells me im ruining her life and her status because my hospital bills are so massive and I beg her to check up on me which she has never done and refuses to do (she also cannot afford to take me to anymore doctors). I have been really suicidal lately because of this too though I haven’t acted because im too afraid. I can’t work a job, no place will hire me (also have ocd and mdd) and most days I feel like im going to go into a coma or die. I’m not able to sleep or eat much and my blood pressure is always spiraling. I feel like I’ve really ruined all my chances at recovery and there’s no hope left for me. I tried living with my sister and it improved my physical condition so much, but she kicked me out because she found out I am lesbian and cursed me, which lead to me getting my laptop phone and tablet stolen (my things were left out on the street)—ultimately landing me back in my parents’ house (which mom still threatens to kick me out of, somehow). For the longest time I have been wanting to make a GoFundMe and share my story on TikTok despite my lack of friends, but as God would have it, I see someone with a similar story to me, my age abd racial background (only difference is their lack of physical abuse and a genetic stomach condition). That person raised enough money to make a living and secure a job. On the other hand I just feel like im just going to die whether by my hand or my body’s. I blame my lack of success on my poor looks, my ideation, my autism and mental illnesss, and my body—all of which I hate. Right now as I’m typing this, my room is piled high with trash and I can’t walk. My mom constantly complains that everyone gets depressed but I’m just disgusting and I’m faking being sick to burden her financially. As of today, she recently threw me against a wall after I blacked out again. I also keep having pain at night that worsens when I move my chest. I’m also afraid of eating because of the pain it causes. I feel done for. And before I get told to call for an ambulance, I can’t afford it and the paramedics have been to my house around 3 times before to admit me (and two of those times were calls from my friends over my poorly hidden suicide attempts). I also saw an express clinic doctor (er was full everyone has been waiting 12 hours) as recent as three weeks ago for labored breathing and coughing as well that told me I likely had a respiratory infection but to also see a neurologist and cardiologist (numbers were high). Now on the other hand, the paramedics I saw told me if they see me again they will put me in long-term psychiatric care (I was in it before for a week and I was verbally abused and neglected by doctors and Christian conversion therapists). The reputation of the mental facility is the worst in my state and I just can’t do it. I have no hope. I wish I wasn’t so afraid to die.

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