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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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Broken Hearted in Nevada: Julie's Story

Part 1 of 2 Congenital heart defects are the most common birth defect in humans, affecting 1% of the world’s population. In the United States alone, 40,000 babies are born with CHD every year.1. Of those babies, about 25% will have a critical CHD, requiring surgery in the first year of life. There is no cure.

In the last few decades, advances in surgical techniques and research mean that today, about 95% of those born with non-critical CHD and 69% of those born with critical CHD will live to see adulthood. Those medical advances were largely in the pediatric space and focused heavily on survival.

In recent years, estimates show that over 1.4 million adults are living with CHD in our country. But for this population, the U.S. medical system is woefully underprepared to treat them. You may have seen stories from actors, politicians, or athletes living with CHD who seem to have no issues receiving appropriate care, but what about everyone else?

Meet Julie, a 53-year-old woman living with critical congenital heart defects. She is a daughter, twin sister, and loving mother. Julie has miraculously outlived every grim prediction doctors made in her early childhood, despite the odds being overwhelmingly stacked against her.

For babies like Julie, born with congenital heart defects between 1970-1974, the biggest hurdle was surviving the first year of life. If they did reach their first birthday, the chances of surviving to adulthood were just 77-83%.

Heart surgery on infants did not become commonplace in the United States until the early 1970s. After a year of infant CHD surgery at Boston Children’s Hospital in 1972, surgeons had some data to work with. They realized that babies with critical CHD who died generally did so in the first few weeks of life. The rest of that decade saw a shift from surgery in infancy to surgery in the newborn period for these babies, with the first successful procedure coming in 1983 on an 11-day-old.

Julie had her first open-heart surgery at the age of 5 1/2 in 1976. Her childhood was filled with summer vacations, school, birthdays, and lots of visits to the pediatric cardiologist. Because there were no specialists for adults with congenital heart defects until 2015, Julie continued to see her pediatric cardiologist as an adult. Her heart remained stable until her mid-20s.

In 1995, at age 25, Julie gave birth to a beautiful, healthy baby girl. Researchers had barely begun to study adults with CHD and no one told Julie she should have additional cardiac care and monitoring during pregnancy (probably because they didn’t know yet). Standards of care for adults with CHD were not issued until 2008 with the next update coming in 2018.

After the birth of her daughter, Julie’s heart really struggled. By age 26, in 1996, she was back in the hospital for her second open-heart surgery. There was no road map for Julie’s medical team to follow and they were dealing with a long list of heart-related issues in her body. Not to mention, Julie lived in Nevada, where the healthcare system could barely serve its healthy population.

The surgery did not go as planned and took far longer than anticipated. As the procedure entered its seventh hour, extensive bleeding and the length of time on the bypass machine forced the surgeons to place Julie into a coma, with an open chest. She wouldn’t wake up for almost two weeks.

What happened during her 13-day coma is largely unknown. Medical records were not easy to access, and communication from doctors to family members was limited. Julie woke from the coma completely paralyzed on her right side, unable to hold, feed, or care for her young daughter. She didn’t know it at the time, but this would be a turning point for her health.

Facing yet another uphill battle in her young life, Julie persevered and recovered function on her right side with months of intensive therapies. She would go on living life, raising her daughter, and continuing to follow up with her pediatric cardiologist.

As she aged, additional health conditions arose and everyday tasks became more difficult. Julie could feel that something was happening in her body, but unfortunately, Nevada still did not have any adult CHD specialists that could investigate. Despite the herculean efforts of her pediatric cardiologists, Julie declined into heart failure and would require a full evaluation by a specialized adult CHD center.

The team at UCLA’s Adult Congenital Heart Disease Center confirmed Julie’s heart failure diagnosis, but she was blindsided by the severity of her disease. Without knowing they even existed, Julie never had the chance to use the ACHD care standards for her anatomy, and was now looking at evaluation for a heart transplant.

If Julie’s life were a feature film, it

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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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My story my life my choice

On oct 5 2018 I was shot 4 times by some guy I had never met I chose not to leave the place I was at I was asked to go there come to find out I was set up to die be abuse of a scared girl that used manipulation and deciet to gain favoritism and finacial support anyway I was in a coma for a month long story short I was only there to take her money like she asked I thought I was protecting her when the gun came out three years prior the same thing happened he held her against st her will for three days I was just informed of this 2 days prior on oct 3 also she never said a word but on her police statement she said she told me to leave repeatedly I even asked her when he showed me the gun and stated leave I replied only if she says to I looked at her and said do you want me to leave because I will never come back anyway I woke deformed missing part of my liver part of my lungs my spleen removed I lost any self respect all self worth I never really had any to start with but her gift was making me feel like I mattered and because of this and how great it felt I built a company in 6 months that was making so much money it didn't seem real there's so much more I woke up confused I couldn't walk eat drink think so I did what I always did accepted the blame because I didn't remember I mean the sheriff blamed me for the simple reason he was responcible for the budget of the county and in his eyes I didn't deserve any help if he only knew how close I was to holding him accountable im done for.now good night

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Finding value in everything but yourself

How could love when when the mirror holds no value
How can you connect when the fear tells you to push away
You have searched your hole life for this feeling of connection but you failed to learn the most basic fundamentals all of it must start with reflection
Have you ever took the time to look at your on reflection to get to know the one that stairs back your direction
Maybe when you brush your hair did you notice yourself did you feel a connection
Or when you brushed your teeth no I always look the other direction .
No wonder I'm so broken Iv never taken the time to connect with my self I don't even know you a stranger is my reflection for 50 years iv lived in shame its starting to catch up How the shame turns to blame first I blamed everyone else but the odds always explained it can't be when the odd one is always me soldier up little man there's no set path there is no fam you threw that away to nieve to understand the feeling of worthlessness as your knowledge cut threw the critical criticism was understood the shame I carry was handed down all I did was meet the expectation accepted the decree that was layed before me no I didn't chose it it chose me and before I could understand I was devoured like my father before me .The pain I cause the ones that ment most to me the shame I allowed to over rule every part me AND I realize God sacrificed his beautiful Son so we all could be free but my sin was so vile even I have to hate me only one rule that matters so much to me never ever let my pain fall on another its mine to bare only me .My choices were mine I chose this path I chose to believe but what iv learned ,what this life has taught me is love is a weakness it will always decieve the more you give the less you recieve. I CHOSE TO CARE my heart screams it at me is it because I never found any value none I could see as my eyes cross paths with my reflection as it looked back at me.
It's kind of dark these words I speak but my GOAL IS TRUST IN JESUS BECAUSE IM MOST DEFINITELY A JESUS FREAK .WHAT HAS CAUSED ME TO BELIEVE MAYBE IT WAS ALL THE THINGS IV BEEN THRUE ALL I KNOW IS HE WAS RIGHT THERE WALKING WITH ME AND WHEN I WAS TO TIRED READY TO GIVE UP READY TO DELETE ME ALL THE WIEGHT WAS LIFTED MY FATHER WAS CARRYING ME IF I TRYED TO EXPLAIN YOU WOULD CONSIDER ME INSANE IF I TOLD YOU THE TRUTH WHAT JESUS HAS PROCLAIMED TO ME
YOU WOULD CONSIDER IT SCIENCE FICTION YOU WANT EVEN BELIEVE IT WHEN IT HAPPENS TO YOU WHY WOULD YOU BELIEVE IT JUST CAUSE I SAID IT HAPPENED TO ME . SHOT FOUR TIMES WHAT A FOOL I MUST BE I BELUEVED WHAT YOU SAID I THOUGHT I FINALLY FOUND SOMEONE THAT TRULLY LOVED ME YOU CONSIDERED IT ALL A GAME I WAS IN A COMA FOR A MONTH I CANT EVEN EXPLAIN THE THINGS I WAS FORCED TO SEE, YOU LIED TO THE LAW SO THEY WOULD CONDEMN ME THE SAD PART IS YOU WERE RIGHT I ALLOWED YOU TO TAKE EVERYTHING FROM ME ITS MAKING ME STRONG AS LONG AS THE SELF PITY DOESNT OVERWHELM ME THE HARDEST PART IS FINDING A REASON
IM TIRED OF THE REASON BEING ME MY BIGGEST PROBLEM IS EASY TO SEE JUST LOOK HOW MANY TIMES I SAID THE WORD" ME " IF IV LEARNED NOTHING ELSE THERES A TRUTH THAT STUCK WITH ME THE MORE YOU ALLOW YOURSELF TO BE A VICTIM THE MORE OF A VICTIM YOU WILL BE GET OVER IT NOONE CARES STAY CLOSE TO GOD AFTER ALL HE IS THE ONLY ONE THAT WAS EVER REALLY THERE , I CONSIDER THIS PLACE THE PLACE THAT I MUST SUFFER I SURE HOPE THE LORD THY GOD HAS GRACE FOR ME I KNOW IM NOT DESERVING HOW COULD ANY OF US BE