The above links are just some of those you will find if you would like to know a little more about SCAD.
On the 7th June, Jessica had gone into St. Vincent’s hospital for the routine pre-admission, before her Total hip replacement the following Wednesday, I had gone to the dental hospital to have some new dentures fitted, intending to go to the hospital afterwards.
Things were not to be as routine as they usually are, throughout the proceedings it was discovered that unbeknown to either of us Jessica had recently had two small heart attacks.
Jessica has Autonomic Dysreflexia and does not experience pain in the same way as I do which is why the slight pains in her chest and left arm were thought nothing of because they seemed such tiny pains.
An EEG, Cardiac ultrasound, CT Angiography later confirmed that a serious event had taken place. For those who know Jessica as soon as she dressed herself after the CT Angiography she shot through even though the Cardiac Specialist had wanted to admit her.
Well, we received a telephone call that evening from a Dr Andrew Jabbour telling madame that she had a very serious condition for which he was arranging an Angiogram the next morning. During the procedure Jessica suffered an incidence of of Bradycardia which truncated the proceedings though enough information was gathered to make a diagnosis.
They called “code blue” and admitted her and when I arrived she was as chirpy as ever after her latest adventure.
Apparently her event of Spontaneous Coronary Artery Dissection had been totally asymptomatic since it cannot quite be determined when it happened and Jessica recalls no symptoms-
Signs and symptoms of spontaneous coronary artery dissection (SCAD) are the same as symptoms of other types of heart attacks and may include:
- Chest pain
- A rapid heartbeat or fluttery feeling in your chest
- Pain in your arms, shoulders or jaw
- Shortness of breath
- Unusual, extreme tiredness
And I noticed none.
For all anyone seems to guess, for very little information came our way from her medical team, it may have happened a few years ago down to a few hours ago.
Spontaneous coronary artery dissection (SCAD) is the leading cause of heart attack in women under age 40 and until recently was largely unstudied due to the erroneous belief that it was a rare occurrence. Novel patient-initiated research initiated in 2010 by the multidisciplinary Mayo Clinic SCAD Research Program SCAD is changing that. Mayo Clinic is the leading clinical and research program for SCAD, a cause of heart attack
Don’t worry — you’re just tired and out of sorts after having your baby. But the chest pain experienced by the woman you’re about to meet was much more than a difficult recovery. She had a heart attack when a rare and deadly condition stopped blood flow to her heart. The same thing happened to another woman. After sharing their stories on social networking sites they found more women with the same problem. That’s when they
A heart attack at age 35. That’s not supposed to happen. The woman you’re about to meet suffered what’s called a spontaneous coronary artery dissection, or SCAD. It’s a condition that’s hard to diagnose and there’s very little information available about it. Experts at Mayo Clinic have results from studies aimed at learning more about this life-threatening condition.
Jessica’s hip Replacement was cancelled and now she is getting to know the world of SCAD survivors with many appointments to various clinics.
RESOURCES – NOT JESSICA BLAIR OR ANDREW
This page will be an ongoing labor a love, a work in progress. [Her] current prediction (and goal) is that it will get updated semi-frequently, as [she]find new sources. 🙂
Last Updated: Wednesday 5 April 2017
Comprehensive Lists of Traits & Characteristics (with emphasis on adults, especially females):
- Rudy Simone’s (author of “Aspergirls” and several other excellent books) list of traits (Help4Aspergers.com)
- Tania Marshall’s (author of “I am Aspiengirl” and “I am Aspienwoman”) list of traits in younger girls
- Tania Marshall’s list of traits in adult females
- Tony Attwood’s list of Asperger’s traits (gender-neutral)
Information on Neurodiveristy:
- Neurodiversity: Some Basic Terms and Definitions – from NeuroCosmopolitanism.com
- Not Otherwise Specified Magazine (NOS Mag) ~ Neurodiversity Culture + Representation (NEW!)
Excellent Books About Asperger’s/Autism, Written By Autistic People:
- “Thinking In Pictures” – Temple Grandin, 1996
- “Different Not Less: Inspiring Stories of Achievement and Successful Employment of Adults with Autism, Asperger’s, and ADHD” – Temple Grandin,
- “The Autistic Brain: Helping Different Kinds of Minds Succeed [Reprint Edition]” – Temple Grandin, 2014
- “The Loving Push: How Parents and Professionals Can Help Spectrum Kids Become Successful Adults” – Temple Grandin,
- “Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism” – Temple Grandin, coming soon
- “Everyday Aspergers” – Samantha Craft, 2016
- “Painted Words: Aspects of Autism Translated” – Judy Endow
- “Learning the Hidden Curriculum: The Odyssey of One Autistic Adult” – Judy Endow
- “The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment” – Judy Endow
- “Practical Solutions for Stabilizing Students With Classic Autism To Be Ready To Learn and Getting To Go” – Judy Endow
- “Paper Words: Discovering and Living With My Autism” – Judy Endow
- “Safety Skills For Asperger Women” – Liane Holliday Willey
- “Aspergirls: Empowering Females With Asperger Syndrome” – Rudy Simone, 2010
- “Broken Cookies Taste Just As Sweet: The Amazing Grace of Motherhood, Marriage, and Miracles on the Spectrum” – Marisa Ulrich, 2017 (NEW!)
Excellent Books About Asperger’s/Autism, Written by Non-Autistic People:
- “Neurotribes: The Legacy of Autism and the Future of Neurodiversity” – Steve Silberman
- “The Complete Guide To Asperger’s Syndrome” – Tony Attwood, 2007 (NEW!)
- “I Am AspienGirl: Not Your Average Superhero” – Tania Marshall, M.Sc.
- “I Am AspienWomen” – Tania Marshall, M.Sc.
- “AspienPowers” – Tania Marshall, M.Sc.
- “I Am AspienBoy” – Tania Marshall, M.Sc. (pre-order only)
- “Behind the Mask: A Guide For Professionals Working With Females on the Autism Spectrum” – Tania Marshall, M.Sc. (pre-order only)
Progressive, Autism-Friendly Publishers: (NEW!)
- Jessica Kingsley Publishers (UK)
- Your Stories Matter (UK)
- Autonomous Press (online, unknown location) ~ Weird Books For Weird People
Professionals Who Provide Asperger’s/Autism Spectrum Assessments (both will keep your results and status confidential; both take a positive and gender-neutral approach to Asperger’s/ASD):
- Tania Marshall (MSc) (Australia) (will do Skype, worldwide)
- Autism Advantage (PhD) (United States) (will do Skype in Colorado and Texas, USA)
Other Asperger’s/Autism Support Resources:
- Auptima Press (excellent holiday survival guides and other resources)
- Toni Boucher (talented consultant, 26 years experience)
Asperger’s/autism Spectrum Advocacy and Positive Research:
- Autistic Self-Advocacy Network (ASAN)
- Academic Autism Spectrum Partnership In Research and Education (AASPIRE) (partnered with autistic adults, most of whom are opposed to curing autism) (NEW!)
- American Badass Advocates ~ Peer-led initiatives for Neurodiversity (NEW!)
- Boycott Autism Speaks
- Dana Foundation ~ Your gateway to responsible information about the brain (NEW!) which includes Temple Grandin’s amazing words “The World Needs People With Asperger’s Syndrome” (from 2002) (NEW!)
- The BullSh*t Fairy
List of Personal Blogs written by Aspie/”ActuallyAutistic” people:
- An Autism Observer (most comprehensive resource to date! Organized into categories as well)
Excellent Positive, Creative, Humorous, and/or Open-Minded Resources:
- The Art of Autism – “an international collaboration of talented individuals who have come together to display the creative abilities of people on the autism spectrum and others who are neurodivergent” (their words)
- Exceptional 2 Infinity – “Redefining neuro differences and intelligence through positive art”
- Aspie Comic – a lighter/humorous side of Asperger’s (my description)
- Thinking Person’s Guide To Autism (Thinking Autism Guide) – “What you need to know: from autistic people, professionals, and parents” (their description)
- NT Speaks – an international collaboration in the spirit of light-hearted parody of “turning the tables” back on “puzzle-piece” organizations. Brand-new and being built by a handful of people who also have busy daytime schedules/work demands – but keep checking back!
- NeuroCosmopolitanism – “Nick Walker’s notes on neurodiversity, autism, and cognitive liberty”
Autistic Radio Shows/Chat/Etc:
- AutChat – an Twitter-centric online community with structured weekly topics, all under the hashtag #autchat
- David Snape – A place to show off your hidden talents (radio show and blog)
Building Bridges Between Asperger’s/Autistic People and Neurotypical People:
- Learn From Autistics – “Connecting parents and caregivers with autistic voices”
- The Curly Hair Project – offers Autism Spectrum training courses
It just keeps coming
Posted in chronic illness, Chronic pain, Fibromyalgia, Life, Multiple Sclerosis
When you live with a body that never gets things right, well, eventually, nothing ever surprises you. Doing something incorrectly is as second nature to my body, as breathing is.
If you live in Scotland and you are aged over 50, every two years they send you out a bowel cancer test kit. All you have to do is supply a smear of your stools, from three separate dates within a ten day period, then post it back to them. It’s that simple and free, so to not do it, seems rather silly. I have to admit that I didn’t do the first one when it arrived, as it arrived on my 50th birthday, not exactly something that filled me with joy, in fact, I put it in the bin. Well, I already knew without someone rubbing it in, just how old I had become. Three weeks ago, my third test kit arrived and I once more set out to comply with their wishes. It all sounds really easy and it is, but when you have problems both with twisting your body and with your dexterity, well, it adds a new level of complexity to the whole thing. Once complete, I put it back in it’s prepaid envelope and asked Adam to post it, then set about life as always, and as always, forgetting all about it. [ ]
1 post published by livinginalimitedword during March 2017
I’m sorry I haven’t written for a while, but life went a little crazy for me and I simply stopped doing almost everything. When I last wrote, I was full of beans and convinced that I had found the answer to the intense cold I was feeling. Ever since winter arrived, I had felt nothing but cold. Not the normal cold that is linked to the outside temperature, but a far more intense and at times, even painful cold. It didn’t make full sense to me, but I was colder than I had ever been this early in winter, and I knew I was driving Adam mad with my insistence that there had to be a draft, a vent left open somewhere, or that sealant somewhere had failed. There were a few things about it that were a little odd, but I just kept brushing aside, something I now know was a huge mistake. It didn’t seem to matter where I was in the house, including in my bed, my legs and my back were always cold. At times, it was so painful that I found myself on the verge of tears and unable to think of anything else. All I wanted was a heat source, one that was close to my legs, and my invention had to be the answer for my legs, my back, well I was going to deal with that one later.[ more ]
Andrew writing – Jessica, being chronically ill and wheelchair dependent is governed by the hours Day Carers come to provide One on One Social Interaction for her in the community – now she doesn’t mind this at all. My difficulty is the early hours at which I must arise to fit her out for these events, and to manage when things go wrong and the Agency doesn’t materialize.
I also have a respite allocation to assist my arthritic self do shopping and the Agency has very creative ideas regarding when it is timely to shop – not. You must wait around for them since they can be very late. This is nothing like the trauma in the reblog below but I am trying to say we understand in our own limited way.
The day that you reach out and you ask for help, the day when you tell the world that you are no longer coping alone, isn’t the day where life gets easier, it’s the day when life is turned on its head and will never be the same again. What I wanted, was peace and quiet. Days, where I didn’t have to think or do anything, other than sit here and let life happen. It hasn’t turned out that way at all. I know this is only the start of week two, but I’m already exhausted by the whole routine. It didn’t take any brain power, to know that last week, was going to be spent teaching (my new carer) Laura, just what was needed and how I would like it done. So exhaustion was going to happen, but this is week two and I’m still exhausted. Admittedly, Monday wasn’t Laura’s fault, but it is also the perfect example of how my days appear and feel.[more]
Source: Draining daily