HEDS TALES

𝐃𝐚𝐲 𝟐𝟑 – 𝐌𝐢𝐬𝐜𝐨𝐧𝐜𝐞𝐩𝐭𝐢𝐨𝐧𝐬ℙ𝕠𝕤𝕥 𝕒𝕓𝕠𝕦𝕥 𝕒 𝕞𝕚𝕤𝕔𝕠𝕟𝕔𝕖𝕡𝕥𝕚𝕠𝕟 𝕡𝕖𝕠𝕡𝕝𝕖 𝕔𝕠𝕞𝕞𝕠𝕟𝕝𝕪 𝕙𝕒𝕧𝕖 𝕒𝕓𝕠𝕦𝕥 𝕪𝕠𝕦𝕣 𝕔𝕠𝕟𝕕𝕚𝕥𝕚𝕠𝕟 𝕒𝕟𝕕 𝕔𝕠𝕣𝕣𝕖𝕔𝕥 𝕚𝕥 𝕨𝕚𝕥𝕙 𝕒𝕔𝕔𝕦𝕣𝕒𝕥𝕖 𝕚𝕟𝕗𝕠𝕣𝕞𝕒𝕥𝕚𝕠𝕟.People are always giving me their unsolicited advice. They always tell me how diet, supplements and yoga will cure me.𝙄𝙩 𝙞𝙨 𝙖 𝙂𝙀𝙉𝙀𝙏𝙄𝘾 𝘿𝙄𝙎𝙀𝘼𝙎𝙀! 𝙄𝙩 𝙞𝙨 𝙄𝙉𝘾𝙐𝙍𝘼𝘽𝙇𝙀!I have reached a point where I respond with sarcasm to get my point across because often they cannot comprehend simple facts. So when I’m given this unsolicited advice, I ask if they think it’ll also cure my brother’s Spastic Quadriplegic Cerebral Palsy (SQCP). They get it then.Tucked away in their advice lies a dig; an assumption that EDS’ers must live unhealthy lives. I make sure tell them the contrary. Thanks to my parents, I grew up eating well balanced meals daily. I did not eat fast food or junk food. Recently, I became less rigid diet wise, but still maintain balance and avoid certain foods. I have been active all of my life. As a dancer and athlete, exercising is a lifestyle. I grew up taking vitamins and supplements. In fact, I’ve been taking probiotics for decades; long before they became an expensive trend. I have enough connective brain cells to understand health basics. When they think it’s our ignorance in understanding a healthy lifestyle, it’s really their ignorance in understanding the condition—and that leads to misconceptions. #myedschallenge#EDS #healthcare #misconceptions #chronicillness #ehlersdanlossyndromeawarenessmonth #makinghoofprints #hearmyhoofbeats #angies_heds_tales

May 4th = Orange 🟠

On May 04, 2024, buildings around the globe will light up in “orange” in support of the EDS Awareness, so I ask that you all go “orange” then too. Whether you light up your home, go orange on social media or pull out an orange lightsaber, show your orange support on May 4th! * #orange #lightuporange #orangelightup #orangelight #goorange #may4th #orangelightsaber #ehlersdanlossyndromeawareness #callforsupport #makinghoofprints #hearmyhoofbeats #angies_heds_tales

ℍ𝔸ℙℙ𝕐 ℕ𝔼𝕎 𝕐𝔼𝔸ℝ! #happynewyear #imadeit

𝗚𝗔𝗦𝗧𝗥𝗢𝗣𝗔𝗥𝗘𝗦𝗜𝗦 𝗔𝗪𝗔𝗥𝗘𝗡𝗘𝗦𝗦 𝗠𝗢𝗡𝗧𝗛 💚 * #gastroparesisawarenessmonth #gastroparesisawareness #gastroparesis #ihatemyguts

𝟛𝟙 𝔻𝕒𝕪𝕤 𝕠𝕗 𝔼𝔻𝕊 & ℍ𝕊𝔻 𝔻𝕒𝕪 𝟙𝟟 - 𝔽𝕒𝕧𝕠𝕣𝕚𝕥𝕖 𝕎𝕒𝕪𝕤 𝕥𝕠 R҉E҉C҉H҉A҉R҉G҉E҉ 𝕐𝕠𝕦𝕣 𝕄𝕚𝕟𝕕 ⚡️Make rest a priority ⚡️Spend time with friends ⚡️Do something creative ⚡️Take a walk ⚡️Work on genealogy ⚡️Work on organizing ⚡️Watch mindless TV ⚡️Enjoy nature * #myedschallenge #ehlersdanlossyndromes #rechargeyourmind #rest #friends #creativity #walk #genealogy #organize #mindlesstv #nature #makinghoofprints #hearmyhoofbeats #angies_heds_tales

𝟛𝟙 𝔻𝕒𝕪𝕤 𝕠𝕗 𝔼𝔻𝕊 & ℍ𝕊𝔻𝔻𝕒𝕪 𝟙𝟚- 𝕐𝕠𝕦𝕣 ℙ𝕠𝕖𝕞𝕤/𝕊𝕙𝕒𝕣𝕖 𝕒 ℚ𝕦𝕠𝕥𝕖 I took a great interest in writing poetry in childhood. I really enjoyed writing poems in my youth because it was a powerful way for me to express myself and to make sense of the world. I wrote a book of poems back then and this poem from my book was so simple yet so powerful. I wrote “𝐓𝐞𝐚𝐫𝐝𝐫𝐨𝐩” in 1986 and it was published in 1987. #myedschallenge #mayawarenessmonth #ehlersdanlossyndromes #eds #heds #day12 #poem #poems #poetry #teardrop #makinghoofprints #hearmyhoofbeats #angies_heds_tales

𝟑𝟏 𝐃𝐚𝐲𝐬 𝐨𝐟 𝐄𝐃𝐒 & 𝐇𝐒𝐃 𝐃𝐚𝐲 8 - Fact or Stat About EDS & HSD The Ehlers-Danlos Syndromes (EDS) are a group of 13 heritable connective tissue disorders. Some symptoms are common across all EDS types, but each type has different characteristics. These symptoms can range from mildly loose joints to life-threatening complications. * #myedschallenge #mayawarenessmonth #fact #ehlersdanlossyndromeawarenessmonth #eds #heds #veds #aeds #bcs #keds #deds #peds #meds #mceds #speds #cveds #cleds #ceds #makinghoofprints #hearmyhoofbeats

𝟑𝟏 𝐃𝐚𝐲𝐬 𝐨𝐟 𝐄𝐃𝐒 & 𝐇𝐒𝐃𝐃𝐚𝐲 𝟒 - 𝐒𝐡𝐢𝐧𝐞 𝐚 𝐋𝐢𝐠𝐡𝐭 𝐨𝐧 𝐚 𝐓𝐲𝐩𝐞 𝐨𝐟 𝐄𝐃𝐒 𝐨𝐫 𝐇𝐒𝐃I’m shining the a light on Generalized Hypermobility Spectrum Disorder (G-HSD)…and since it is May the 4th, I’m using a lightsaber to do so 🤭𝐆-𝐇𝐒𝐃 is one of four symptomatic joint hypermobility spectrum disorders. It is a connective tissue disorder that affects the entire body. It causes joint instability, recurrent injury and is characterized by pain. Additionally, other associated problems include dysautonomia, mast cell activation disorder, headaches, GI disorders and fatigue.Some have argued that HSD and hEDS are the same condition along a spectrum. Management for both conditions is the same. Until definitive diagnostic tests are developed, their distinction will remain unclear. May Awareness Month is important because recognition and validation are needed to get the care needed to help improve the lives of people with these disorders.*#myedschallenge #mayawarenessmonth #hsd #shinealight #lightsaber #maythefourth #maythefouthbewithyou #makinghoofprints #hearmyhoofbeats #angies_heds_tales

Day 31: Community * #MyEDSChallenge The Ehlers-Danlos Society * C⃣ O⃣ M⃣ M⃣ U⃣ N⃣ I⃣ T⃣ Y⃣ creates fellowship and engagement and effects change. The EDS community is a very supportive and resilient community that encourages progress for support for the Ehlers-Danlos Syndromes. It has helped me tremendously and I am humbled that I too, have been able to help others. Together We Dazzle 🖤🦓🤍🦓🖤🦓🤍🦓🖤 * #community #dazzle #together #fellowship #encourage #effectchange #promotehealth #togetherwedazzle #zebradazzle #zebrastrong #ehlersdanlosawarenessmonth #makingtheinvisiblevisible #raisingawareness #mayis #may #makinghoofprints #hearmyhoofbeats #angies_heds_tales

Day 30: Spotlight a Different Type of EDS/HSD * #MyEDSChallenge The Ehlers-Danlos Society * Cardiac-valvular EDS (cvEDS) characterized by severe progressive cardiac-valvular problems (aortic valve, mitral valve), skin problems (hyperextensibility, atrophic scars, thin skin, easy bruising) and joint hypermobility. * #ehlersdanlosawarenessmonth #cardiacvalvularehlersdanlossyndrome #cveds #raisingawareness #makingtheinvisiblevisible #makinghoofprints #hearmyhoofbeats

Day 29: What Awareness Means To Me * #MyEDSChallenge The Ehlers-Danlos Society * 𝔸𝕨𝕒𝕣𝕖𝕟𝕖𝕤𝕤 𝕞𝕖𝕒𝕟𝕤 ℍ𝕆ℙ𝔼 It means education initiatives. It means ground-breaking research. It means improved treatment options. It means support. It means a chance for better quality of life. #ehlersdanlossyndromeawarenessmonth #ehlersdanlos #eds #heds #awareness #hope #education #research #treatment #support #qualityoflife #better #improved #chance #makingtheinvisiblevisible #doingmypart #makinghoofprints #hearmyhoofbeats #angies_heds_tales

Day 15: How long was your journey to diagnosis? Despite overlooked symptoms in childhood, I didn’t begin my journey for answers until my late teens and early 20’s. I went to college, married, started a family, raised my three children and my youngest was in college when I was finally diagnosed with EDS. Twenty-five years! More than two decades of anguish. Doctors were either baffled or dismissive; never curious to investigate. There was no “Dr. House” on my care team! A quarter of a century is a long time. I suffered the loss of a counseling career that I fervently worked to achieve. I forfeited dancing professionally— a passion that drove me. I was stripped of so much and my acceptance was difficult. Even with my obvious symptoms, I was repeatedly dismissed. There even came a point where my fight shifted, as my kids began showing symptoms. However; my efforts often only made me the subject of medical gaslighting over and over. It has been a long and treacherous road—one which I still haven’t reached my destination. This is the reason I feel obligated to bring awareness. “No other disease in the history of modern medicine has been neglected in such a way as Ehlers-Danlos Syndrome” —Rodney Grahame * #MyEDSChallenge @ehlers.danlos * #ehlersdanlosawareness #eds #heds #edsjourney #journey #longroadtohoe #challenging #struggle #difficult #hard #depressing #disappointing #tired #loss #diagnosis #lifechanging #lifealtering #makingtheinvisiblevisible #makinghoofprints #hearmyhoofbeats #angies_heds_tales

DAY 14: Favorite EDS life hacks For years, I’ve been using an old hand-held travel bag with compartments to tote tools and meds wherever I go. I’m able to tote my tens machine, braces, splints, pills, creams rollers and other modalities all in an organized, compact bag. It’s been a lifesaver. I also use a pregnancy pillow (named “Roger”). Not only do I sleep with Roger, but he follows me around everywhere. He’s a little big and awkward but I can use him to brace my back—with arm rests too while I’m sitting. I also position him to brace my back and raise my computer and other devices to eye level. He’s really come in handy more for sitting than sleeping for me. • • • #MyEDSChallenge @ehlers.danlos #lifehacks #edslifehacks #day14 #ehlersdanlosawarenessmonth #ehlersdanlosawareness #eds #heds #travelbag #zebrabag #pillow #pregnancypillow #rogerthealien #helpingmegetthroughit #makingtheinvisiblevisible #makinghoofprints #hearmyhoofbeats #angies_heds_tales

Day 12: Healthcare professionals who listened to, and support me It took two decades of seeing countless medical professionals, including many specialists, before anyone finally understood what I was going through. I was repeatedly being told: you’re too young, but you’re fit, it’s anxiety, it’s stress, etc. A rheumatology nurse practitioner was the first to understand and validate my constant pain. Then an orthopedist who was treating me for an injury had serious concerns for all of my loose and unstable joints. Despite his urgent recommendations, I was dismissed in follow ups with other care providers. It would take an additional 2 years before my request for a genetics referral would be obliged. The geneticist who diagnosed EDS, was instrumental in care. Suddenly, my whole life was explained. She knew exactly what I had been up against and shared EDS specific resources. Of those resources, I was able to find an EDS clinic at a renowned rehabilitation medical center. After a ton of red tape, I received an out-of-network referral for treatment in that clinic and for the first time in my life I am surrounded by medical care professionals that understand my condition. #MyEDSChallenge * * * #nursesday #ehlersdanlos #eds #edslife #recommendations #referrals #frustration #disappointment #gaslighting #longjourney #finally #makingtheinvsiblevisible #makinghoofprints #hearmyhoofbeats #angies_heds_tales

Day 11: What brings me joy? #MyEDSChallenge * #family #mypassions #dancing #helpingothers #genealogy #creativity #fellowship #fun #nature #aethetics #beauty #serendipity #eds #ehlerdanlosawareness #makinghoofprints #hearmyhoofb

Day 11: What brings me joy? #MyEDSChallenge * #family #mypassions #dancing #helpingothers #genealogy #creativity #fellowship #fun #nature #aethetics #beauty #serendipity #eds #ehlerdanlosawareness #makinghoofprints #hearmyhoofbeats #angies_heds_tales

Day: 9 Mental Health Week Stress from dealing with a chronic illness and all of the barriers that arise can be detrimental to mental health. The frustration from not being believed, being dismissed and becoming a victim of gaslighting can cause a range of emotions from anxiety to depression. Because of this, it is important for EDS and HSD sufferers to not only focus on physical health, but taking care of mental health and emotional well-being is equally important. Self-care, good sleep hygiene, and positive relationships are just a few things that can aid emotional well-being. In addition to medicine and tips, adding a mental health care professional to your care team can be very beneficial. * * * #MyEDSChallenge #mentalhealthweek #mentalhealth #emotionalwellbeing #anxiety #depression #mentalhealtprofessional #psychiatrist #psychiatry #psychologist #psychology #therapist #therapy #dismissed #ignored #gaslighting # medicalgaslighting #makingtheinvisiblevisible #spreadingawareness #makinghoofprints #hearmyhoofbeats #angies_heds_tales #MoveMental

It’s been nearly a month since my mom lost her battle with cancer and I’ve been bogged down making her final arrangements. Thankfully my sisters and I have been working together but it’s a daunting task nonetheless. Besides drained and lost, I don’t know what I’m feeling. After leaving my household for more than a year to go care for my mom, I’m finding it difficult to readapt to life now that she’s gone. I’m struggling with getting moving. I started the Muldowney Protocol last month, but struggling to keep up every day. I’ve become so deconditioned. I get winded easily. My blood pressure is really high even with meds and my appointment to address it is not for another 2 months. On top of several joint issues, this week my lower back has been killing me, I was dealing with a MCAS flare, I had countless presyncope episodes, and last night I was up vomiting. Needless to say, I was in bed all day. I’m exhausted! I’m in pain! I’m mad! I’m grieving! I’m done! I need a ten year nap! • • • #exhausted #depleted #tired #mad #highbloodpressure #jointpain #nap #mcas #syncope #grieving #needanap

It’s freezing outside but I gotta soak these muscles & joints ❗️ . . . #roughday #sorejoints #soremuscles #ehlersdanlossyndrome #eds #heds #mybodyhurts #imtired #jacuzzi #spa #freezingoutside #makinghoofprints #hearmyhoofbeats #angies_heds_tales