Coma

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...

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

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