Broke in a new pair of sneakers to do my first virtual duathlon for @newyorktriathlon.
The March Madness Duathlon was 2 miles of running, 12 miles of cycling and 2 extra miles if running. Originally I was scheduled for a 2 hour cycling session from my coach with a 30 minute run – decided to commit to both.
My endometriosis flare up caused me to have a really late start. Kinda thankful this was a virtual race. Social distancing was a breeze since I ran at night and I took my cycling section indoors on my trainer.
Admittedly it’s not the same without the cheers and crowd but it felt good to run again.
My medal will be available once all of this stuff is over. In the meantime, I gifted myself some wild salmon before bed.
My newest video: my perspective on what it means to have a meaningful life as someone who has dealt with intense suicidality in the past. Link in bio or video can be found by searching for my username on YouTube. #actuallyautistic #chronicillness #disability #mentalhealth #mentalillness #chronicpain https://www.instagram.com/p/Bx6MitGB2DH/?igshid=1lwkkcnt1addh
”No other disease in the history of modern medicine, has been neglected in such a way as Ehler’s Danlos Syndrome” Professor Rodney Grahame
EDS is a group of connective tissue disorders, our collagen is defective. Collagen is a major component of the human body. This causes a wide variety of multi-systematic symptoms. EDS is incredibly hard to diagnosis and not widely known. It is extremely hard to for doctors who are not educated in EDS to put together symptoms like constant nausea, dislocations/subluxations, hyper-mobility and easy bruising (just to name a few). Because of this, EDS is considered a rare and under-diagnosed. We are not rare, just rarely know.
Ehler’s Danlos Syndrome as all to often been overlooked, misunderstood and mistreated. As with many other rare and invisible illnesses. Here are some facts about EDS:
EDS is a connective tissue disorder.
It is something that effects the entire body, it does not just make you extra bendy.
There are 13 identified subtypes, with some being ultra rare.
It is an invisible illness.
It is a life changer.
Not just a ‘minor inconvenience’.
It is valid.
Don’t let anyone tell you differently.
“It’s like when you run a marathon, and you’re sore for the next couple days, but that feeling never. Goes. Away. You rest, it still hurts. You work out more, it still hurts. You take pain medicine, it still hurts. You change your diet, it still hurts. You do every possible thing you can think of, it still hurts. But then you have to pretend like you’re fine otherwise you get ridiculed which just makes everything worse.”
It’s EDS awareness month once again and the reality is awareness is not enough.
For those that don’t know EDS is a connective disorder that causes a wide array of symptoms from joint dislocations to chronic nausea and so much more. There are 13 identified subtypes, all but one having an identified gene and some being ultra rare.
EDS has been overlooked, mistreated and misunderstood for far too long. Patients seeking care and understanding are often met with disbelief from the very people who are supposed to be helping us. We as patients with EDS are denied our own experience by our healthcare providers, the very people who are supposed to help us. There are not only chronic health issues when met with a lack of understanding but also psychological implications. According to Loreen Myerson, an anthropologist and a person living with EDS - “The healthcare experience of anyone with EDS appears to be much the same. Almost without exception, negative.”
Up until 1980 Hysteria was a studied psychological disorder that was thought to be caused by female reproductive organs. Women’s pain is all too often dismissed and ignored, a recent study published in a Pennsylvania journal found that women typically wait 16 minutes longer to receive pain medications than their male counterparts in an emergency room setting. A survey of 2,400 women with chronic pain published in the National Pain Report found that 90% of women feel that their healthcare system discriminates against women. Another study found that women who are in the emergency room with acute abdominal pain wait on average 65 minutes before receiving analgesic (painkiller), while their male counterparts receive analgesic wait on average 49 minutes.
I look back at my childhood and all the signs were there, they were just simply dismissed and ignored by the people who were supposed to be helping me. look back at my childhood and all the signs are there. Women are disproportionately affected by EDS. EDS is still overlooked, misdiagnosed and mistreated by the very people who are supposed to be helping us. My story however is not unique, both anecdotal evidence and peer reviewed research are pointing at disturbing trend that it is not at all new, women are more likely to be dismissed and overlooked when it comes to chronic pain and other health issues. In a peer reviewed study published in the Autoimmunity Reviews found that autoimmune diseases disproportionately affect women with 65% of patients being women. 85% of thyroiditis, systemic sclerosis, systemic lupus erythematosus and sjogren’s patients are female.
This is a cultural issue that we must continue to fight for ourselves and those to come, as demonstrated above both my peer reviewed research and personal narrative. These issues are ever present in our society and women’s pain is taken less seriously whether it comes to emergency care or by a primary care physician.
EDS is misunderstood, overlooked and mistreated. But there is so much hope for the future. All of us zebras who are fighting for more awareness. Hopefully in the future it won’t take us on average 20 years to be diagnosed.
Technically, it was 3 years for me… but I was already just into my forties and it took a serious cascade of symptoms to get the diagnosis ball rolling. Looking back, there were clues right back to my childhood so really, it took four whole decades.
#Repost @rarediseasepatient ・・・ Some of us need #narcotic #painmanagement just to live in our own bodies, because our #pain is so severe. This makes the one-sided #media hype about the #opioidcrisis dangerous and damaging to us, because it makes this prescription #medication more difficult to obtain from scared doctors and hospitals, even from pain-management specialists. Finding a pain-management #doctor who is comfortable managing a #patient with narcotic medication, even when no other treatment has been effective, is increasingly difficult, and may sometimes be impossible. #ChronicPain patients who can’t find help for pain are at risk for #suicide. If you are in pain, you have the right to medical intervention. If you are a member of the media, you have a responsibility to report with balance and accuracy. If you are a doctor, you have a duty to treat patients with the appropriate medication for each patient’s needs, not your own, even if that means managing a narcotic. www.practicalpainmanagement.com/pain/other/ehlers-danlos-syndrome-emerging-challenge-pain-management #EDS #EhlersDanlosSyndrome #Awareness #RareDisease #RareDiseases #ChronicIllness #ChronicallyIll #Genetics #GeneticDisorder Please help: www.gofundme.com/HOPE-for-a-RareDisease-Patient https://www.instagram.com/p/B57ErGZpYNf/?igshid=29leb9vzy92x
TBT the only time a professional has ever taken my photo I am a beautiful flower . . . . . (This is like a year old don’t worry I’m healing ) . #sexyenby #ehlersdanlossyndrome #ehlersdanlos #eds #zebralife #arthrogram #xray #needles #needlephobia #chronicillness #chronicpain #invisibleillness #imvisibleillnessawareness #shoulderdislocation #timeforphysio #bones #skeleton #spookyseason #spooky https://www.instagram.com/p/CUvYZBEl2Tx/?utm_medium=tumblr
Be thankful for today and love laugh and love , for in one second your entire life could be turned inside out and be unlike you know it so much so that you will loose parts of yourself and the little things that you gave no thought to and took for granted will be what you miss the most .
“It’s not because I don’t care, am not interested or don’t want to spend time with you [as long to] I’m exhausted…running on empty, and it’s impossible to pour from an empty cup…I still love you. I still care.” What I Need You to Know When I Don’t Reply
“Most #chronicpain patients fight like crazy to live a normal life. They try to ignore the pain and go about their days, but it’s just not that easy. Even when you ignore pain, push it to the back of your brain…pain doesn’t give up.”
When tradies say they will be there between 8-9 pushing 10 and still not here angry 5 mins sleep in the morning is worth luquid gold especially when it’s taken me most the night to get to sleep.
“My body is once again failing me… I have the motivation and determination to achieve awesome things but I’m trapped in a body that will not allow me to… Many people with #chronicillness will relate to this… I just wanted to say #YouAreNotAlone.”
