Coma

So I can really try and make sure you know that I have been diagnosed with so many different things that all have no cure and I have been under the knife at least 15 plus times total and with each diagnosis things seemingly just get worse and harder to find in my body. For me it's just a day in and day out struggle and as for the rest of the world around me I am literally just a pain in their behinds. I've been denied 7 times since the age of 23 for disability and I am now 43 applying for disability again with an attorney. With everything from a rare lung disorder that has caused a total of 11 intubations into a coma because it causes complete lung failure in both of my lungs at the same time to endometriosis and different auto immune diseases to simple conditions as well. Then on top of all those things even including a broken back in 3 spots after a fall, I have multiple mental health issues as well. At the younger ages I was diagnosed with panic attacks, depression and anxiety disorders. I now have ptsd due to all the hospitalizations, bipolar disorder 2 meaning I mostly suffer from depression or depressive moods at least it was that way for almost 30 years to date. As of around the age of 41 that is always how it went. I prayed and asked for God to take the depression away and he did thank heavens. But I don't want my worst enemy to suffer from any of the other problems so it's been hard to say a genuine prayer for those so I am suffering terribly from pain issues and anxiety along side of one more mental health issue not just generalized anxiety but social anxiety on top of that I haven't had this much anxiety and or pain ever in my life. And I can't understand why nobody is doing anything for me as far as doctors are concerned and I am still waiting for disability to be approved. I just need to know what really is the reason why I have so many issues I know that there is something that these doctors aren't telling me about what I need to know and what the disability offices need to know. I will keep pushing and pleading for what I need to know and for what I deserve which is a genuine breakthrough #MentalHealthAwareness #mentalhealthmatters #properdiagnosis #physicalpain #disabilitydoctors #disabilityawareness #iminrealpain

Bonus Post🙌🤗 Because when one of my Mighty Friends lets me know something they could use more help with handling, I have got your back.

Not just his or her back, but all of your backs!

Again I put hours into drafting this “Powerhouse of Inspiration and Support” (words from a Mighty friend that keeps me going big for you), so I request that as many people as possible start and keep continuing a conversation thread in the comments 👇 below letting me and you know - what did you take away from this Hugely Impactful post that can help You on Your mental health and healing journey?

So, over breakfast this morning, my mind is going to work for this Mighty friend of mine who smartly brought this up in a convo thread here in one of my 2 groups I lead solely for all of you to benefit from.

Ok, so this one is pretty cool, because my mind is sifting through my many, many exactly what we all need to know notes, and I am remembering tools and a theory ('let them' theory) about this that a famous motivational speaker (Mel Robbins / Talks Powerfully About How To Live Your Best Life: YouTube Channel, podcast host, author ) wrote an entire bestselling book on, and then I had one of those very clear “Aha”moments of pride and accomplishment because I remembered that before I read about this theory and other relative articles, I CONQUERED this finally in a Huge way that was a Game-Changer in my mental health journey, in my relationships— in my relationship with my husband, in my relationship with friends and the ones that get quotation marks because I now know whose iffy, and just as importantly, a game-changer in my relationship with Myself.

Did I build up enough suspense for what it is that I am addressing here 🤩🤔

For your enjoyment, I am adding some lightness and fun and some great #throwbackthursday to this lengthy, but important personal example that also exemplifies that I talk the talk and walk the walk.

I am addressing the nasty thing we all have to get a handle on— “distress tolerance (like insults)”.

When I can first inspire you from my own experience, I guess that is a good place to start.

Then, I will give you other advice from the same most Notable Thought Leaders that I took notes from (I mentioned a major one already in this post.)

I also have notes on an impartial look at both the pro’s and con’s of her 'let them' theory.

But first what I finally did to get my power back when I am insulted and to get a handle on my distress tolerance associated with this and other distressing things.

The only place to start here from my experiences — lessons taught to me the hardest way, but that I worked on to learn and grow from-is from the beginning.

This long post will also include the example - intended to Also inspire you- of me proudly telling my story for the importance of owning my story instead of my story owning me (another big lesson I learned), and for the importance of the higher good - hard work and gifts I give free to help save others.

I will Try to keep it shorter because I am already going long, but if you do want to ask me Anything, just ask me. I am mostly an open book to genuine people.

(In rereading this draft, I could not go shorter, but I worked to make it absolutely Full of So Many Great, Helpful Stuff and Not 🥱 Boring.)

Since I was born, I had to endure constant insults from my very miserable 2 years older brother, and I learned much later on to see his jealousy of me, then I learned much later on of his own mental health problems that he kept wrongly choosing to deny and ignore.

And, within all of my most formative years and then into my early adulthood I endured heart-shattering insults - one worse than the next- stuff any parent should never utter, the level of insults to seriously f*ck up a good person like me and bring out the most severe form of inherited, disabling, chronic/recurring , at times catatonic inducing, major depressive disorder by both of my horrific parents- until I cut them off and the 1 passed away, these 2 definition of narcissistic, and seriously sick with life-long, crippling depression and anxiety that my father sought treatment for but my mother lived in stupid denial of not just her depression but also her crippling anxiety, no self-esteem…she would not help herself to be a good mother even…

Plus, on top of all of those joke of immediate “family” insulting me to the nth degree and even when they took me down entirely to where I became so physically and mentally extremely sick with major depression that for years until the past 2 years was Treatment-Resistant Depression (TRD), I also had to endure the honesty evil stepmother that they write about in books. Wow did that b*tch purely hate me and she happily showed it in every way unimaginable.

Funny thing though, I never once was I bullied or insulted by any kids or classmates at any point from Nursery school through College— I was liked by all groups and cliques of people. So, makes you go hmmmmm. Like from that throwback song by C+C Music Factory
“Things That Make You Go Hmmmm….” (Released in 1990)

Then, all grown up and married at 38- surprise- my husband quickly turned into my new biggest critic and my insulter with no bounds.

And he actually to this day can state simply to me “I don’t give compliments”.

I came to learn finally that my brother was actually known to be an *sshole, my parents were beyond help from professionals since they had never broken the visciuos cycle of generational trauma and generational depression that was so widespread all over both sides of my “family”, plus they just were not good people or genuine, but very good liars -to themselves and to me…
I came to learn that our town I grew up in all referred to my stepmother as “evil”—- my hairdresser back when I was in my early twenties told me of the many clients she had that told her about this widely known Evil woman in the town and neighboring towns.
And I finally even got my mother-in-law to explain to me that my husband learned this disrespectful way to insult and lash out at me, his love of his life (which is true) - every bit of it he watched and mimicked from the awful way his father treated his very sweet mom.

I hope you are seeing the trend and facts here —- and a bunch of you know me, the facts are I am Good and even Great, and they are all sh*t people and through and through with the exception of my husband as I will explain.

No excuses for my husband’s years of insulting me, hurting me, making me even more sick with the severest, recurring, extremely long-lasting episodes of major depressive disorder with multiple times in the hospital for attempting to you know.

I had my first onset of major depressive disorder at age 34.
A year before meeting my husband.
Remember, if you have been reading all of this, I was doomed to inherit the worst level of MDD.
I didn’t even honestly know what depression of any kind was went it hit me like a canon ball.

This illness, which is finally in the medical journals (yeah, I read these too when necessary), finally it is being called what it truly is A Medical Condition not just related to or a mental illness; this severe medical condition and the layers upon layers of traumas that started with these early years of insults and then even worse trauma, took my life over and took me away from myself and others until in later 2017 when I pulled myself out of a
3-year coma-like, completely homebound, completely bed-bound, major depressive episode and I made a commitment to myself to Love Myself Back To Life and Thrive. And I Rose like a Phoenix and I Took Back My Power.

I often use this famous title from the famous poem “And Still I Rise” by Maya Angelou.
With this famous quote:
“You may kill me with your hatefulness, But still, like air, I'll rise.”

My Power is …(go to next post Part 2 of 2 with same image sign used)

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