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My MRI experience: reasons I'm proud of myself

I had an MRI study done this week on my head and neck. I have symptoms of Multiple Sclerosis, and so this imaging study will confirm or deny the presence of lesions, or areas of scarring resulting from demyelination in the brain or spinal column. As anxious as I am to receive those results, I'm proud of myself for getting through the study, because...

I'm autistic and am extremely sensitive to sound! While I don't have claustrophobia, the experience of being "trapped" in such a loud, uncomfortable environment was causing me terrible anxiety. But knowing that my participation in the study was necessary to diagnose and treat another problem, I found a way to cope with the overstimulation in the short-term. I used a combination of deep breathing, mantras, and distraction. When the pattern of the magnetic coil was slow enough, I even tried to think of songs that fit the beat, and I imagined the radio frequency as a steady bass note.

Strangely enough, there were some positive aspects to the experience that helped me to bear it. For one, my head was held in place with lots of padding, and I've always found pressure on my ears to be comforting. (This additional padding also helped to deaden the noise somewhat.) For another, I was given a couple of blankets, and the pressure of the blankets felt like a firm hug.

An hour passed much more quickly than I would have expected. Soon enough, the study was over... So I drove home, popped in my Loop Quiet earplugs (seriously a Godsend), and slept like a rock.

I just can't believe that I managed this. As a child, I struggled to tolerate any loud noises whatsoever; I was scared witless by high-powered hand dryers and intercom announcements. I'm proud of myself that I'm strong enough to endure what I must (e.g., necessary medical procedures)—and that I know to accommodate myself when and where I can.

#AutismSpectrumDisorder #MultipleSclerosis

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The American Prison System's Contribution to the Mental Health Crisis

The American prison system, with its large incarcerated population and punitive approach, stands as a stark contrast to many other developed nations. One of its most glaring shortcomings is its contribution to the mental health crisis, particularly by denying adequate treatment to those who need it most. This issue becomes even more pronounced when juxtaposed with prison systems in other developed nations like Norway and Japan, for example, which prioritize rehabilitation over punishment.

The American Prison System: A Breeding Ground for Mental Health Issues
The U.S. has the highest incarceration rate in the world, with over 2 million individuals behind bars. A significant portion of these inmates enter the system with pre-existing mental health conditions. However, rather than receiving the necessary treatment and care, they often find themselves in environments that exacerbate their mental health issues.

Overcrowding is a pervasive problem in American prisons. Many facilities are filled beyond their intended capacity, leading to stressful and unhealthy living conditions. This overcrowding can intensify feelings of claustrophobia, anxiety, and hopelessness among inmates.

Solitary confinement, a punitive measure frequently employed in the U.S., can have devastating psychological effects. Extended periods in isolation can lead to a range of mental health issues, from anxiety and depression to hallucinations and severe emotional distress.

Moreover, the lack of proper medical care in many American prisons is alarming. Mental health services are often understaffed, underfunded, or entirely absent. This systemic neglect means that countless inmates, many of whom desperately need psychiatric care, are left untreated.

Violence, both physical and sexual, is another grim reality of the American prison landscape. Exposure to such violence, whether as a victim or a witness, can lead to trauma, PTSD, and a host of other psychological issues.

Rehabilitation vs. Punishment: Insights from Norway and Japan
In stark contrast to the American system, countries like Norway and Japan have prison systems that emphasize rehabilitation and the reduction of repeat offenses. Norway’s prison system operates on the principle of restorative justice. Rather than focusing solely on punishment, the Norwegian approach seeks to repair the harm caused by crime. Inmates in Norway live in conditions that closely resemble life outside prison walls. They have access to educational programs, vocational training, and therapy sessions. This emphasis on rehabilitation and reintegration has led Norway to boast one of the lowest recidivism rates globally. Japan, on the other hand, maintains a strict prison system. However, it balances this strictness with a significant emphasis on discipline and rehabilitation. Inmates in Japanese prisons undergo rigorous training programs, which include vocational training, to prepare them for a productive life post-incarceration. Additionally, mental health care is provided, with a focus on understanding and addressing the root causes of criminal behavior.

The Way Forward for America
The disparities between the American prison system and those of countries like Norway and Japan underscore the urgent need for reform in the U.S. By emphasizing punishment at the expense of rehabilitation, the American system not only fails to address the root causes of criminal behavior but also compounds the nation’s mental health crisis. To forge a path forward, the U.S. must invest heavily in mental health services within the prison system. Every inmate should have access to quality mental health care, tailored to their individual needs. The widespread use of solitary confinement, especially for those with pre-existing mental health conditions, must be re-evaluated and limited. Rehabilitation programs, focusing on education, vocational training, and therapy, should be the cornerstone of the prison experience, preparing inmates for successful reintegration into society. Lastly, a shift in the judicial paradigm is necessary, moving from purely punitive measures to approaches rooted in restorative justice.

In conclusion, the American prison system’s current approach to mental health is both inhumane and ineffective. By drawing inspiration from countries that prioritize rehabilitation and mental well-being, the U.S. can create a prison system that truly serves its citizens and addresses the root causes of crime.


Dear classmate

To say my life is vastly different from anyone I know is the biggest understatement in the history of understatement. All those I graduated with have almost reached 30 years of life.

I feel the divide of our similarities widen now more than ever. It gets more and more devastating to me each few months especially as new health problems seem to come at least twice a month.

Every single doctor I have come across here in S.C. has never heard of my Ehlers-Danlos Syndrome. I have taught 50+ doctors and 150+ nurses about this diagnoses. And that isn’t even my biggest or worst health problem, though it will be with me forever.

Because of that I feel some relief knowing I will never be able to pass these horrible hereditary genes to any poor unsuspecting mini me. And then the hurt explodes that I will never be able to have a future mini me.

I adore each picture of a baby that all of those I grew up with post. So many little ones that look just as their parents did at their age. A smile I can’t help but have as a new addition to the population appears in the world, and memories of their likeness in my class many years ago plays through my mind.

It is so amazing and heartening to see each and every one of you grow as people as you become parents. You THRIVE.

My heart aches deep and low knowing I can never commiserate on going through pregnancy, maternity photos, new parent long nights and each new year birthday and school photos. It feels as though my heart has been ripped out knowing I will never get to introduce my parents to a grandbaby from me or make my brother and sister aunt and uncle to a child I brought into the world.
Jokes and laughter do their best to convince me it is all okay and that the divide between me and everyone else in the world is no big deal when my writing and words can create a large sturdy bridge so everyone can understand my side of things.

But those quiet moments alone with just you and your child, I won’t get those. Each day you wake up, get to shower, make breakfast, go to work, make memories out in the world, I don’t get that.

My life is 99% spent in my room in bed sleeping with excruciating pain waking me just so I can take my many medications-60 pills a day-try to choke down at least a teeny bit of food so my nausea can be lessened by a sliver, and then go right back to bed. I miss out on LIVING. I have gone way past my limit of painful existence just to try desperately every thing possible to improve my health. But doctors cost me so much more than I have ever gained in my full 28 years. Those who waste my living time by refusing to help me, refusing to do anything to decrease the pain that so haunts and tortures me millisecond by millisecond. Years go by wasted being spent with doctors I pray will help me just once but they scoff, being not one bit bothered by my discomfort and ocean of tears.

This is the healthcare the world has been building. And I, for one, have never wanted so badly to LIVE when I am being told to not exist.

I don’t get to go to work and do what passion I love most of all. I don’t get to go to a home I own in a car I love at the end of the day. I don’t get to spend time with friends or family not because I don’t want to but because my body won’t let me. The freedom of choice in my life is almost nothing. Claustrophobia in a tiny room I exist in is not an existence anyone would choose. I don’t even get to go to more school as my health is so negatively unpredictable. With home health care at last I don’t have to expend everything in me just to try to get dressed for the day and making my hair presentable.

Each of those medications is so necessary and yet each side effect possible and those doctors say aren’t, torment me even as they half help me. Beggars can’t be choosers.

I want so badly to be content as I savor scraps of joy every few months. But as time passes, so does any tiny dream I ever let slip out of my eyes and drip down my face.

All of us with bad health or no health want nothing more than to pretend everything is okay and that we have the same happiness and freedom that is suppose to be a God-given right to each child that comes into this world.

But at least to a small part of me, infertility is not the worst thing for a chronically ill chronically in pain girl with a chronically failing body.

Please, savor each moment you have to live, go to work, be with your kids and spouse, make memories or take vacations to places far away.

Because once your health starts to fade, it is near impossible to get back.

4 reactions 1 comment

Flight anxiety #Anxiety #PanicDisorder #Claustrophobia #MentalHealth

Hi all,

I’ve posted about this before and gotten great support. I have a flight coming up on Tuesday (and the eventual return a week after). I have such a phobia of flying that I’m slowly trying to work on and have gotten great tips here before. I’m hoping for any tips, support, love and encouragement as I try to do the hard things.

7 reactions 1 comment

Public transit anxiety

My #Claustrophobia (stemming from #OCD ) has made the train into the city very challenging for work.. someone stood too close to me today and I broke out into a cold sweat and just got off at the next stop even tho it wasn’t mine. Today, there was a bomb threat on the train line I usually take. I have to take the same train to work tomorrow and I am fully #fixating on the risk, I can’t relax, my pulse is racing, how am I going to get through the train ride to work.. can’t work from home.. I don’t want to let this fear win and set into a permanent fear… I can’t stop thinking about it and I’m getting to the point of being terrified… please help, it feels like my mind is in a tornado and I am reminding myself to breathe deeply but not hyperventilate

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Do not understand.#CPTSD ,#avm #artheals

I have been told, by a case worker, with our insurance provider,a diagnosis I was unaware of.This isn't the first time.I was told by the neurosurgeonsRN called me to tell me size and severity of my AVM prior to knowing I had one.I was told I had claustrophobia after having a seperate surgeon ask for general anesthesia for me.That is still in my chart.I am exhausted of not knowing the husband doubts anything unless he gears it himself.He won't speak about it without it turning into an argument.An argument over the multiple diagnosis.I can remember when he'd say..I thought it was so n so.Last visit you said it was this.Now your saying this.Ive been actually advocating for myself.Told tonight that I go on and on and on.I had only spoke for less than 5 screaming or calling names.Calm.Shocked at his lack of reaction.His accusing look and tone.T hat things are sarcastically implied.Jabs and stares that are defensive and too much for me.I need to express myself.It is not my problem if the person Im talking to cant handle their emotions.Im not keeping mine in anymore.When Im pushed.I react.Why am I wrong for pushing back?When I was asking for reassurance, all you did was fight.

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How to Break Panic Attacks

Part 1 of 2 The room was spinning. There were hundreds of people. Intelligent, impactful people. As I stood on the platform in front of the crowd, everything went blurry, out of focus, as though I was being sucked into a vortex. Blood rushed to my head and I couldn’t think. I couldn’t speak… something had to come out, but language evaded me. I leaned into the microphone. I tried to conjure up a string of words that would make sense, anything, just to release me from this state of panic. I desperately wanted to escape, as though it were a night terror that I was helplessly trying to snap myself out of; only I knew waking up wasn’t an escape, I was already awake, I could feel everything too vividly. There was no way of getting out, I was stuck in the mess.

This was one of many #PanicAttacks I personally experienced over several years. I’m not sure when they first crept into my life. I’ve always been a bit shy around people I don’t know, but I’d done plenty of public speaking over the years, which I could handle fine. But, the day when I stepped up to the microphone to accept a business award, I was riddled with stress – it was a hideous experience. #Anxiety simply had gotten the better of me.

I had been thinking about that awards night all day. It was a constant tug of war in my mind, wanting to win our business category, but dreading the idea of an acceptance speech on stage. Looking back, it’s easy to see the stress I had all around me – some of it I can stem back to key events, like when my 4-week old son went into emergency heart surgery, and the PTSD that followed. And for whatever reason, I can also be just a bit of an anxious person – I like to be perfect, but never meet that lofty standard. That night, in that season of my life, the two of those things well and truly collided and formed a lethal combination, breeding panic attacks that were becoming more regular by the day. #Claustrophobia of the mind. You freeze. You’re stuck. You can’t go backward, you can’t go forwards. There’s nothing you can do about it… at least, that’s what I believed at the time – that I was simply at the mercy of this malicious mind which showed up as it pleased. It was becoming more regular, and it was a lonely place. Most of all, it was a scary proposition living with the thought of future panic attacks – you begin panicking about panicking – how stupid is that! So you go to what comes naturally and avoid situations prone to giving rise to panic, perpetuating further anxiety.

I remember the conversation vividly. My wife and I were attending a course for families who had suffered from significant stress as a result of their child’s chronic heart condition. In a private conversation, I asked the psychologist hosting the course whether there’s anything you can do about panic attacks. I was surprised by how succinct her answer was. She simply said you can do two things. Reduce your daily life stress from a 9 to an 8. And, breathe. I’ve since learnt to add one more – gradual exposure.

1. Reduce Daily Stress

2. Deep Breathing

3. Gradual Exposure

Here’s the thing. If your general stress/anxiety levels are running at a 9, and your mind decides to hit that big red panic button, there’s not a whole lot of room until it gets to a 10 – panic territory. A speech, a social situation or facing something which caused #Trauma in the past. You think the event is the problem, hence you begin to avoid it. But if you take a good hard look at where your general stress levels are running at in life, and you work on dialing it down just a notch or two, you have wiggle room. Sure, your stress will still spike, but not usually to the point where panic attacks reside.

And Breathe. It’s so simple, but it’s one of the only things we have control over, and it makes a monumental difference. Put simply, we breathe faster when we stress, it’s our bodies natural way of getting more oxygen to our muscles, ready to run. This comes in handy when we’re being chased by a whatever. But when there is no real threat, just our mind wreaking havoc, we can manage panic by controlled breathing.

Fast forward a few years…

The auditorium was full of people. It was Father’s Day and I was speaking on a Q&A panel. It was about 3 years since the night I’d experienced that panic attack at the awards night. But… I was exercising regularly. Meditating. Sleeping regular hours. Slowing down. Being kinder to myself. And importantly, I’d been slowly exposing mysel


How to Break Panic Attacks

Part 2 of 2 f to public speaking… facing the giant villain in my head. This combination of lifestyle choices and gradual exposure reduced my stress levels down to a 7… 8 tops. Yes, I was packing myself, but I needed to do this. I knew I could do this because I had a game plan. The physiology behind a panic attacks wasn’t so foreign to me and made more sense. I went for a run that morning, and 10 minutes before I went down on stage I breathed.

In 1, 2, 3, 4. Hold 1, 2, 3, 4, 5, 6, 7, 8. Out 1, 2, 3, 4, 5, 6, 7. I repeated this until I walked down onto the stage.

I’m not exactly sure what happened that day, but it’s as though everything just flowed seamlessly. I spoke without panic. I joked. I shared what I believed was important about life as a Dad. I was me, and it felt so good to share that. It’s hard to describe the high I was on after the panel… I liken it to the moment I landed on the ground after jumping out of a plane, parachuting for my 40th birthday. I was OK – no regrets.

What results in a panic attack for you? Common examples may be:

– Speaking in front of others

– Medical appointments such as going to the dentist

– Seeing a particular person

– A certain sound, smell or sight

– Being in small spaces

– Being in crowds

Panic attacks are terrifying. Period. But panic attacks can be physiologically explained. Likewise, they can be physiologically managed. Don’t judge yourself. Don’t avoid. Gradually expose yourself to that which is freaking you out. Reduce your general life stress down a notch or two. And as trivial as it sounds, remember to breathe. You’ve got this.


What is this thing called "Hope"? #seekingknowledge

What is this thing called hope? Yes, this is a serious question. What frame of reference do you use to explain something to someone who has never know or seen hope? We liken the situation to finding a single Waldo in a swarm of people who all look slightly like Waldo. But none ARE Waldo.

We are, at this point, 47 days into our 2 new Antidepressants, 21 days into our Antipsychotic and no change other than we sleep an added 1 to 2 hours a night. We are grateful for that. Our meds are increased every 2 weeks. I, since none of the other want to attend at this time, do video chat with at least 3 Doctors every week. The all tell me that hope will help us in this wait and see pattern we currently find ourselves stuck within.

We believe that everything in our universe has a counter balance. Night has Day. These are concrete, provable, repeatable facts available to establish what distinguishes Night from Day. Where "Hope" along with, it's 1st cousins the other emotions and "feeling" are all abstract concepts not grounded by facts.

What reference points does one use when trying to describe abstract concept of "hope" to one who has never seen or experienced it in their lifetime. How would you describe colours to a person who has never seen them? We have as little insight into what "hope" or any of the "emotions" are, at this point. What is this thing called "Hope" and where do we find it?

#SexualAbuse #SexualAssault #Childhoodneglect #DomesticAbuse #DID #raynauds #Fibromyalgia #MyalgicEncephalomyelitis #RheumatoidArthritis #DegenerativeDiscDisease #Hypertension #Trichiasis #irritableboweldisease #GeneralizedAnxietyDisorder #AnxietyDisorders #PanicAttacks #Agoraphobia #Insomnia #Rosacea #Claustrophobia #heartmurmur #ComplexPosttraumaticStressDisorder #Allergies #Dyslexia #OCD #Trichotillomania #cleithrophobia , #IntrusiveThoughts #SuicidalIdeation #haphephobia #EatingDisorder #MajorDepressiveDisorder #SocialPhobia #Acrophobia #Psychosis #DissociativeDisorder #audiohallucinations #visualhallucinations #intervert #raynauds


Fixing claustrophobia on my own

I have realized that it's not a mental or emotional issue or a condition, claustrophobia is actually lack of trust, it is the fear that we might not be heard, it is the loneliness. It's not the fear of dying its the fear of dying without anyone noticing or helping. It feels like what if I cry and cry for help but no body would be there to listen. It's the fear of being alone and not capable, not being independent.
So if you are claustrophobic please look into it from this view point and you will be amazed at it. May be you ll be able to find a solution for your self. #Claustrophobia #Thanatophobia #CTS #PCOS