Arteriovenous Malformation

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I’m new here!

Hi, my name is MummyTut82. I've been diagnosed with so many illnesses diseases that at age 40 and Mum of 3 darling children, I have lost all quality of life and I'm scared of myself honestly.. For I can't keep just 'existing' like this and I know it is destroying my children's hearts watching me so sick ... it breaks me more every minute coz I honestly believe they shouldn't have to see Mummy this way anymore it isn't fair on them... #icantdothis😮‍💨 #heartbroken💔 #idontwanttoleavemybabies😪 #itisjustfartoomuchtohandle💔

#MightyTogether #PTSD #Fibromyalgia #Anxiety #Depression #ADHD #OCD #Grief #Leukemia #FunctionalMovementDisorder #DiabetesType2 #Cancer #RheumatoidArthritis #OpticNeuritis #NeurocardiogenicSyncope #DemyelinatingNeuropathies #CeliacDisease #InappropriateSinusTachycardia #congenitalheartdefect/Disease #BirthDefect #IronDeficiencyAnemia #Arthritis #ArteriovenousMalformation #SuicidalThoughts #chronicactiveepstein-BarrVirus #ChronicIllness #polycysticovarysyndrome(PCOS) #Hyperparathyroidism #ThyroidCancer #Cardiomyopathy #CardiovascularDisease #CongenitalVascularCavernousMalformations

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I’m new here!

Hi, my name is michaelfoglietta. I'm here because my AVM ruptured in 2003 and completely changed my life. I want to help people going through similar situations and let them know that there is still life left to be lived.

#MightyTogether #Stroke #ArteriovenousMalformation

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An Open Letter From A Mama Whose Child Became Medically Complex After Adolescence

Yesterday two of my three children went back to school for the 2022-2023 school year. We did all the things to prepare for the first day: schools supplies, meet the teacher, picked clothes out, talked about what they looked forward to and what they were fearful of.

I walked them to school (we live a few houses away), hugged each of them and waved goodbye reassuring them they were going to have a great day. Then I turned around and headed home.

On my walk I was flooded with the feelings my heart had been storing. My other child will not be returning to school with his siblings because just 11 months ago he suffered a severe hemorrhagic stroke caused by a ruptured aneurysm at the site of an unknown arteriovenous malformation within the left portion of his brain. That was a lot of words right?!?! Yep, that’s what I thought too when it all happened.

The aneurysm that led to a catastrophic bleed resulted in a brain injury we could have never foreseen. See that’s what happens with rare diseases; there is not enough research or education for people to be aware they even exist. Even when the result is lifelong recovery to a degree that is different for each case.

Some parents are informed pre-birth about genetic anomalies or diseases because of genetic testing or ultrasound results. Some find out after the birth of their child takes place or within the first few months because of difficulties or symptoms. We were completely unaware there was a ticking time bomb tucked deeply away in our son’s brain just waiting to explode.

Having your child acquire their disability and become medically complex after their adolescent years is… well, not something words can describe or that I would wish upon anyone. The grief is heavy and the learning curve steep.

I have joined groups of other parents with similar diagnosis’s only to be utterly discouraged by seeing so many others’ miraculous recoveries or much shorter timelines.

I have also built community with other moms who know all too well what it is like to have a medically complex child. I feel more support in these relationships, but still a hole and lack of relation when it comes to the stage of life we are in and grieving what we have lost.

I cannot care for my now 10 year old the way I could if he was 4 or 6. He is just too big. I need to use a lift for transporting and a slide sheet to move him in bed. I cannot pick him up and move him from place to place nor can I easily change him.

The advocacy and focus is also different. They advocate to embrace who their child is and the fact that they are no less and their needs are human, not “special.” WHICH IS ALL COMPLETELY, 10000 PERCENT ACCURATE AND ON POINT!!

I’m just not there. I’m not in that place or space. My child, at this time, is no longer capable of expressing who they were or doing the things they once did. My advocacy is more towards awareness about grief, sharing space and about his condition.

Only a parent who has experienced their child acquiring a brain injury, through disease or trauma, later in life knows the mourning and pain that accompanies every old photograph, every childhood video, every backwards milestone, every part of moving forward your other children experience without their sibling, every word not spoken, every smile not taken, every dream not lived every story not shared.

My goal here is not to discredit other parents’ grief or pain they experience with their children’s disabilities. Or their voice and message. Mine is different, not better or worse.

I grieve what was, what would have been and what could have been. Others grieve what would have been and what could have been. Both are still grief that needs to be explored and dealt with. Both have experiences that are valid and real.

The intent of my writing is to shed light so that when comfort or advice is shared, it is done so with knowledge and wisdom. When you approach a mama to a medically complex, rare disease, disabled child and share words, please be cautious to not put her in a stage of life she is either not prepared for or will never reach. If you do so, those words become a poison that attacks her heart and mind instead of a balm that soothes her soul. #BrainInjury #TBI #avm #PediatricStroke #RareDisease #disabilityparent #MedicallyComplexChild #MedicallyFragile #medicalmama #medicalmom #Caregiver


A Journey Into Peer Support!

A Journey into Peer Support! by Frankie Adao, CRSP

When we talk about recovery, whether it be mental health, physical health or substance abuse recovery, we often speak about it all in regards to a clinical or text book model. However, there has been a movement in the last 10 years that most times, does not get the spotlight or credit for the power in recovery. Peer Support is becoming a rising career for those of us who have the life experience in wellness and recovery.

I am what is known in the field of Mental/Behavioral Health and addiction services as a Certified Recovery Support Practitioner (CRSP). It is a fancy way of saying a Peer Support Specialist. Many agencies across the nation have employed individuals, like myself, to fill the roles in working with individuals who are being provided services.

My journey through recovery that has led me to the most valuable and purposeful work I have ever done started approximately almost 6 years ago. It was not an easy road! The day is very clear in my mind. February 2, 2015. You see I had been dealing with a life time of undiagnosed mental health issues. Looking back now in a place of wellness, those issues started early on in my life as a very young boy. Red flags that my parents and family did not connect the dots such as extreme defiant behaviors to adults, tantrums until I turned blue in the face and harm to animals. Those experiences are somewhat foggy, however, my family now sees how these flags were existent throughout my childhood.

I have an older sister who vividly remembers two incidents with harming animals, but at the time, looked at it was “Frankie is just so bad!” At about 3 or 4 years of age, my parents heard the family cat screaming. When they followed the sounds, they found me behind the couch with the cat and fur in my mouth. I was biting the cat. Then in about the 5th grade, we were going on winter recess for the holidays. My teacher had asked the class who would like to take the classes pet home for the break so it could be cared for. I immediately raised my hand. She advised me to take a letter home to my parents granting their permission to take the mouse home. I took the note home and forged my mother’s name. This was way before emails even were in existence.

The mouse was given to me on the last day of class before break. I remember walking to my mom’s job, saying “Look what I got!!!” My mother freaked out and said “absolutely not! Take it back!” What I do remember was being ENRAGED! I went home with the mouse and what I do remember is going in our snowy back yard. I remember it being snowy as we had mounds of shoveled snow around the yard and being so angry that the snowflakes that fell on my face, melted instantly. That is how angry I felt. I remember seeing RED! Then I remember about 15 minutes later my sister running out in the back yard and screaming “WHAT DID YOU DO! WHAT DID YOU DO!” She had heard screeches! I had buried the mouse into one of the snowy drifts. When my parents got home and my sister told them, they were shocked. They had to make up an excuse as to what happened to the pet once school returned back in session. This is actually even hard to write or fathom because now I am such an animal lover and advocate for animal rights.

At age ten, I was diagnosed with a brain arteriovenous malformation (AVM) and a seizure disorder. As if I didn’t already feel different among kids my age, this made the distance even further. I would isolate, have depressive states, and often thoughts of suicide. These issues manifested into my early adult years leading to explosive reactions towards people in my life and substance abuse issues. I know now that the substance abuse was an effort to self-medicate these issues as I was unaware of what was going on, but would feel so guilty I needed to numb the pain.

My undiagnosed mental health issues where now impacting holding jobs, keeping healthy and supportive relationship, my family and friends. It would get so bad that I would get severe panic attacks that would lead me to having unconscious “fight or flight” responses! Most times than not, it would result in flight. I would get some really good job opportunities, start the job, experience a debilitating anxiety attack, and just get up and leave! I would get this voice that would tell me “You are stupid! You are unqualified! You will fail! You are useless!” My only focus was to get back home to where I felt safe. This pattern would snowball and continue from ages 22 until about age 39! I remember the feeling of not wanting to leave the house, which led to feelings of worthlessness and severe depression. So bad that it would cause intense thoughts of suicide. I would continue this cycle through the birth of my son, through the passing of my grandmother who was a huge support for me, through more jobs, and through destroying relationship. I would try at several points to take my life. There was debilitating depression, guilt and shame! I felt worthless and without direction.

On the morning of February 3rd of 2015, I awoke that morning at about 7 am and pursued an unjust argument with my wife. Just as she was getting ready to go to work and getting my 12 year old ready for school. Enraged for no real reason, I locked myself into my bathroom and proceeded to ingest 80 pills of Tegritol. My wife knew something was going on and her and my son were screaming on the other side of the door. Pleading for me to not do anything drastic. It was at that point that my wife called the police. What they did not know was that the medication I took was time released medication. So when law enforcement arrived, I was not experiencing overdose. I had a replica bee bee gun in my room so when I heard the radios of the police in my home, I grabbed the bee bee gun and opened the door! I didn’t know at the time, but they had been officers that knew me and my family very well. My wife also had told them the bee bee gun was in the room, however they still approached me with hands on their guns. One of the familiar faces said “Frankie, you either come with us willfully or I will have to cuff you and take you to the hospital. We have an ambulance downstairs and you need to get there ASAP!”

I went on my own accord, but it was not without saying very nasty and hurtful things to my wife, my son, the officers and my neighbors. I was taken to the nearest ER and by the time we arrived, I had started to fall into overdose. I had to drink tons of charcoal and had to have my stomach pumped. Things went black! The next thing I remember was waking up in a hospital room. As my eyes began to focus, I can see an image of a person and as they became clear, it was a nurse sitting by my door way. She told me that I had been taken to medical and that due to my suicide attempt, I would need to have a “one to one” monitor in the room at all times to be sure there were no other self-harm attempts. I was instantly struck with intense pain in my face/head. The nurse said “Honey, I am going to give you a mirror. I want you to prepare yourself for what you look like. You tried to get up in the ER yesterday morning and fell face first on the ER floor. You cracked your orbital skull and are very swollen and black and blue.” She handed me the mirror and when I looked at myself I began to cry. I was embarrassed and feeling guilt. I would remain in a medical unit for approximately 5 days. During this time I was assessed daily for liver failure and even told I may be put on a liver transplant list. I was also assessed by several psychiatrists. I refused to see my wife and son. I would only permit my sister and my mother come visit.

On the 5th day I was cleared medically. I thought I was going home. So I thought! A psychiatrist came in and announced that I was to either voluntarily admit myself to their inpatient psychiatric unit or I would be involuntarily admitted for a higher level of treatment. I was TERRIFIED! There was no more running from the issues. They were right there in front of me. So tangible I could almost touch them. My mom was there and I remember even asking her to make a great escape with me. She knew that I had to get help finally. I agreed to go voluntary. That night I was transferred to the unit. Unsure of what to expect, but had images of what I saw on TV and movies and I was scared! I spent 2 weeks on the unit. My daily routine became: waking up at 5 am to shower, some quite time to journal and write letters to the family, eat breakfast, meds, groups, lunch, meds, more groups, some Rec time, more groups, dinner, some TV time, a snack, meds and lights out by 10pm. This became the new structure for my life. Probably the most structure I had in about 25 years. IT WAS JUST WHAT I NEEDED!

During the moments of quite times and lying awake in bed, I had time to reflect on what had led me to this point. I had time to write to those the hurt that I caused them. It allowed me to gain perspective and gain insight into my life. There was a peace finally that I had not experienced in as long as I could remember! I was diagnosed with Bipolar II, Major Depressive Disorder, Generalized Anxiety Disorder and Borderline Personality Disorder. While that may be weighty for some to get diagnosed, I felt relief. I felt that finally, there were answers to what was causing the behaviors and states that I had lived with for most of my life. I was gaining tools on managing life and these knew diagnoses. There was an adjustment to new medication treatments as well as the light bulb moments sitting in CBT & DBT groups. Meeting and talking to the individuals I was spending my time there with. Hearing their experiences, their paths and their journeys. Then discharge came 2 weeks later. I have to say part of me did not want to go! The structure became so comforting for me that I was terrified of the unstructured world! How would I manage all of this? I was clean and sober. I was mentally feeling the best I have in a very long time. I would I sustain all of this?

Upon my discharge I was linked to an outpatient psychiatrist as well as a case worker from Integrated Case Management Services (ICMS) through Catholic Charities. My case worker Patty met me at my home and held my hand through walking into the door for the first time since that morning, which felt like years rather than days. Patty worked with a team of case managers that would be part of my recovery team. Sharon, Lakisha, Alison & Jackie! My dream team of angels. Jackie, my primary case worker, would come to see me several times per week. We would work on wellness and recovery goals. We would talk about life and what staying well meant for me. It was an exploration. Questions that I never thought of. I told Jackie that employment has been a challenge for me and was a trigger. I wanted to contribute to my family, but I wanted to feel valued and purpose!

I truly invested this time of healing, which my wife 200% supported the time I needed to take to heal as well as her and my son. I learned about my diagnoses, my medication treatments, dove into clinical therapeutic treatment and continued with ICMS. At one of my visits with Jackie, about 6-8 months post discharge from the hospital, it was time to start talking about employment. I had no idea what I wanted to do. Jackie explored with me planning to do something I felt happy to get up every day to do. She mentioned an opportunity that she just heard of called Consumer Connections through the mental health Association of New Jersey (MHANJ). They were looking for individuals with mental health and substance abuse recovery. I had been vested into my treatments and actively going to 12 step groups and Jackie thought this may be the thing that would fill that void. With nothing to lose, I applied for a training opportunity to go through a 6 month training course offered through MHANJ where they were training and preparing individuals to work in peer support. They offered me a space in their class. It would be the most amazing education I would get! I made lifelong friendships and would graduate feeling I had the tools and empowerment to work in the field with individuals to help explore their own wellness and recovery. I learned that recovery is not linear. There will be peaks and valleys. That recovery is individual. I would learn about things like motivational interviewing, biological perspectives of mental health, various disorders and treatment options, psychopharmacology and working in community settings. It was a proud moment for me and my family the day of my graduation.

Upon graduating from Consumer Connections, I took the course one step further by applying for my Certified Recovery Support Practitioner licensure through the Certification Board. The addiction Professionals Certification Board of New Jersey’s primary function is the education, certification and testing of addiction and peer specific mental health professionals in the State of New Jersey as well as internationally in partnership with the IC&RC. I completed field work hours volunteering for my ICMS agency and at the end of my hours, was offered a job working for Catholic Charities Program of Assertive Community Treatment (P.A.C.T) as a Peer Support Specialist. At P.A.C.T my recovery experiences and a new skill set as a CRSP, I would invest in a career into providing treatment working with participants of services from all spectrums of mental/behavioral health. Even, working with the very same “Dream Team” I had as an ICMS clients. Sharon, Lakisha, Lilly, and Alison now where my team mates! Full circle!

They have pushed me to return to college, which I graduated in December 2019 with my Bachelors in Psychology. Now I am in graduate school for my Masters in Social work at Louisiana State University. The goal is to obtain my Licensed Clinical Social Worker license so I can open up my own private therapy practice. I have worked in Supportive Housing, treatment and case management services for some of the top agencies in the nation! My wife and son have been supportive and often tell me how proud they are of my journey and the passion I have for what I do. I wake up every morning feeling value and pride in working with the individuals who allow me to be part of their own wellness and recovery. It is not about my experiences, it is about connecting on similar life experiences and empathizing with them in their own experiences. It is about providing hope, advocacy, education, resources and self-determination. That there is life beyond a diagnosis. That your past does not determine your present or future.

Generally, I can open conversations on a peer level that the clinical staff members I work with cannot. People want to be heard. They want to know that someone understands aspects of their challenges on a life level. That they are not just reasons for dissecting their diagnosis. It is a magical connection that happens between two peers in the journey of wellness and recovery. A relationship that is often never heard of in treatment and case management services. The power of the Peer Movement is growing by leaps and bounds as states are seeing evidenced based statistics surrounding the implementation of trained and certified peers! We often talk and hear about experiences in wellness and recovery, but we rarely hear from what people are doing with those experiences to help the next person. Paying it forward! Listen, I did not reinvent the wheel at all into success in recovery. I have my own good days and bad days. I learn how to manage those bad days and utilize the same skill sets that those I work with use to manage their recovery. We are equals! We work together. We are on the life journey together! It is the power that the peer connection brings to the work and the human connection in wellness and recovery!


I Went From Fighting To Live to Wanting To Die #Stroke #ArteriovenousMalformation

It’s hard to remember my brain bleed, because of the nature of it all I obviously felt out of it for a lot of the time, slipping in and out of consciousness. It’s also hard to remember because I think my mind doesn’t want to remember and relive how traumatizing the experience was.

I do remember feeling blessed. I felt beyond grateful and lucky to be alive. I had A LOT of fight in me, and was willing to do whatever it took to fix the brain stem malformation I had. I went to brain scan after brain scan to radiation treatments to more brain scans with one goal in mind: To keep living.

I was happy. So stupidly happy, and I felt invincible. But it started with . No big deal, I’ve always been anxious. It turned into #Depression. Then one day, I broke down. Hello . It took over FOUR years before the mental health effects started to settle in. After I started struggling with , I became suicidal. I couldn’t understand it. “I just want to die” creeped into my mind, then started to take over all of my other feelings. It got louder. And then I got help.

When the days are hard, I still want to die. I convince myself that things will never really get better and my family would be better off without me causing them so much pain. But I try to remind myself of the time I was so determined to live, and found it so easy to find reasons to keep fighting. Sometimes that fighter seems so distant from who I am now. I’m fighting to find her and have more days of wanting to live vs. wanting to die.


New Member #newbie

I just joined The Mighty today because I need a place to vent about my frustrations from living with chronic illness in my 20s. I am partially undiagnosed (some things have been diagnosed but my biggest issue is still a mystery for now) and I am sick and tired of dealing with small town doctors telling me I am too young to have feel this way. Test after test and they STILL can't get to the root of my chronic pain... so apparently it's "all in my head" and I am "faking it for attention." I will be seeing a new doctor soon and hopefully she will listen to what I have to say and take me seriously, fingers crossed and prayers going up! #NewMember #ChronicPain #IrritableBowelSyndromeIBS #Migraine #ArteriovenousMalformation #SpinaBifida