Latest posts tagged with #MySeveralWorlds on Bluesky
My #AxSpA Story for @spondylitis
When I was diagnosed w. #AnkylosingSpondylitis in 2009, the #DelayToDiagnosis meant I had damage that couldn't be fixed. Learn how robotic exoskeletons help patients like me. #disability
🔗
spondylitis.org/patient-stor...
#MySeveralWorlds #CarrieMarshall
"You should think of your energy as if it's a luxury item. Not everyone can afford it." Credit: @femalequotient Image of Taylor Swift on a podcast #pwME #MySeveralWorlds #AutoimmuneFatigue #AutoimmuneDisease #PostExertionalMalaise
"You should think of your energy as if it's a luxury item.
Not everyone can afford it."
Credit: @femalequotient
Image of Taylor Swift on a podcast
#pwME #MySeveralWorlds #AutoimmuneFatigue #AutoimmuneDisease #PostExertionalMalaise
Little dwarf with a pick axe represents high pain days.
My little dwarf with a pick axe is very active today after:
✔️ 3 weeks of testing & emergency treatments
✔️ floods
✔️ a blown circuit
✔️ dealing with OW
✔️ working with pharmacist on meds while building bridge to safety
✔️ dealing with 7 major life stressors
#MySeveralWorlds #Resilence #KeepOnGoing
Many thanks to Melissa at @teamfibro (Fibromyalgia National Health Organization) for featuring my journey with #fibromyalgia. Learn top tips for #LifeWithFibromyalgia at
🔗
supportfibromyalgia.org/fibromyalgia...
#FibromyaligiaAdvocate #FibroNerds #MySeveralWorlds
#SupportFibro
Carrie shares her story about life with D2T #axSpA. She talks about treatment-resistant her arthritis. Her site #MySeveralWorlds is a patient centered hub that assists folks who are chronically ill & disabled.
🔗
arthritis.theenthusiasticlife.com/2024/12/19/a...
Via @arthritischeryl.bsky.social
EMERGENCY INFORMATION EHLERS-DANLOS HANDLE THIS PATIENT WITH GREAT CARE! 🦓 ✔️ Joints may be lax and dislocate easily. ✔️ Skin tearing, splitting and bruising are common. ✔️ Mitral Valve Prolapse, umbilical and inguinal hernias may be present. ✔️ Arterial or intestinal rupture commonly presents as acute abdominal or flank pain that can be diffuse or localized. ✔️ Cerebral arterial rupture may present with altered mental status and be mistaken for drug overdose. ✔️ Emergency procedures (especially for Vascular #EDS) often require trauma, vascular surgery, ICU. ✔️ Elective surgery and procedures should be avoided whenever possible. ✔️ Non-invasive testing is highly preferred. ✔️ Healing may be delayed, with irregular scarring. ✔️ Use alternatives to sutures whenever possible. ✔️ Retain sutures/staples for twice the normal period; watch for wound reopening and dehiscence. ✔️ Anesthetists should use caution upon intubation, as jaw dislocation is common. ✔️ Local anesthestics are usually inadequate or short- lasting. ✔️ Potential spinal and/or cerebullar involvement may increase general anesthetic and surgical risks. #EDSInfo #EhlersDanlosAwareness #EDSAwareness #MySeveralWorlds
EMERGENCY INFORMATION
EHLERS-DANLOS
HANDLE THIS PATIENT WITH GREAT CARE! 🦓
✔️ Joints may be lax & dislocate easily.
✔️ Skin tearing, splitting & bruising are common.
✔️ Mitral Valve Prolapse, umbilical & inguinal hernias may be present.
#EhlersDanlosAwareness #EDSAwareness #EDS #MySeveralWorlds
In this episode of Oh, I Didn't Know That, Amber talks with Carrie, author of #MySeveralWorlds, about navigating Taiwan's healthcare system as a foreigner with #AutoimmuneDisease.
Head to part 1 to hear Carrie's story with #AxSpA.
🔗
www.rti.org.tw/en/programne...
@radiotaiwan.nzcow.com
"Nothing is absolute. Everything changes, everything moves, everything revolves, everything flies and goes away." ~Frida Kahlo ©️ MYSEVERALWORLDS.COM #FridaKahlo #MySeveralWorlds #WarriorWords #Resilience
"Nothing is absolute.
Everything changes, everything moves, everything revolves, everything flies and goes away."
~Frida Kahlo
©️ MYSEVERALWORLDS.COM
#FridaKahlo #MySeveralWorlds
#WarriorWords #Resilience
A person in their darkest hours doesn't need a pep talk. They need to know someone else sees and understands the darkness. Credit: Nate Postlethwait @nate_postlethw #LifeReminders #KindnessMatters #MySeveralWorlds
A person in their darkest hours doesn't need a pep talk. They need to know someone else sees and understands the darkness.
Credit: Nate Postlethwait
@nate_postlethw
#LifeReminders #KindnessMatters #MySeveralWorlds
CAR RIDES WITH CHRONIC PAIN FEEL LIKE THIS: ‣ Stuck in the same position with no way to stretch ‣ Every bump feels like an impact Seats that never support the right places ‣ Muscles tightening because your oodv's on high alert ‣ Pain stacking on top of your 'regular pain' Fatigue hitting way sooner than it should ‣ Trying not to show how uncomfortable vou are It's not "iust a drive." It's something you have to get through. Credit: Surviving Chronic Pain #ChronicPainAwareness #MySeveralWorlds #LetsTalkAboutPain
CAR RIDES WITH CHRONIC PAIN FEEL LIKE
*Stuck in the same position with no way to stretch
*Bumps are impact
*Muscles tightening/ body on alert
*Pain on top of regular pain
It's not iust a drive. It's something you have to get through.
Credit: Surviving Chronic Pain
#MySeveralWorlds #LetsTalkAboutPain
WHAT PATIENTS WISH DOCTORS KNEW "5 minutes of their day can affect our life for months or years. They're only seeing a small picture into our daily reality. Sometimes symptoms are hard to describe, but that doesn't mean they aren't real. O We are not choosing this, and we would do anything to get better. A little empathy goes a long way. We hope they'll treat us like they'd treat a family member they love." Credit: Chronic Love Club
WHAT PATIENTS WISH DOCTORS KNEW
"5 minutes of their day can affect our life for months or years.
They're only seeing a small picture into our daily reality.
We hope they'll treat us like they'd treat a family member they love."
Credit: Chronic Love Club
#MySeveralWorlds #MyChronicLife
Story of my life! "HAVING TO MAKE MEDICAL DECISIONS ON A FREOUENT BASIS IS OVERWHELMING After the doctor has given you your options and you've done your own research, the anxiety often remains. Will this treatment help me or harm me? Will it cause a flare or do irreversible damage? When your condition makes you sensitive to medications, you feel like your body sees the list of possible side- effects as a to-do list. Either way it's a risk: you risk getting worse or you risk staying the same, either way it's terrifying." Credit: @strongerthanpots #ComplexChronicIllness #MySeveralWorlds #DifficultToTreat #MyMedicalDrama
Story of my life!
"HAVING TO MAKE MEDICAL DECISIONS ON A FREOUENT BASIS IS OVERWHELMING
Either way it's a risk: you risk getting worse or you risk staying the same, either way it's terrifying."
Credit: @strongerthanpots
#ComplexChronicIllness #MySeveralWorlds #DifficultToTreat #MyMedicalDrama
"Morning struggles of a full time #Spoonie I literally just put a pill in my mouth, dropped the other one, and then freaked out cuz I couldn't find the one IN MY MOUTH." Credit, Carrie, #MySeveralWorlds
"Morning struggles of a full time
#Spoonie
I literally just put a pill in my mouth, dropped the other one, and then freaked out cuz I couldn't find the one IN MY MOUTH."
Credit, Carrie, #MySeveralWorlds
Some #MondayMotivation as I head into the hospital for cardiac testing and my first infusion. This is another Hell Week for medical testing. To date, all the testing that I've done here in Canada has shown that my health is actually worse than it was than they thought in Taiwan. "Sunflowers a reminder to be strong, stand tall, and always find the light." ~ Anonymous #MondayMotivation #ChronicTruths #KeepOnGoing #MySeveralWorlds
#MondayMotivation as I head to hospital for cardiac testing & my first infusion. All the testing I've done in Canada has shown my health is worse than it was than they thought in Taiwan.
"Sunflowers a reminder to be strong, stand tall, and always find the light."
#KeepOnGoing #MySeveralWorlds
#MECFSis my cage. I have moderate to severe ME. I've had my diagnosis since 2014. I caught a viral infection in July 2014. It not only brought me out of remission with my autoimmune diseases, but it ended my life as I knew it. MECFS is a serious, chronic, multi-system, complex neuroimmune disease. It's common for me to have unexplained fevers. My brain and central nervous system go into overdrive. I don't have the energy to handle much time outside of my home. Life as I knew it crashed to a halt. My life has been extremely limited for over a decade. My quality of life is low. I'm in pain all the time, but most concerning is PEM. Even a spike of emotions can make me weak as a kitten. I never know what will set it off. Post exertional malaise occurs with the smallest activities that are not part of my normal day to day routine. I live with strict limitations to try and avoid more crashes. If I overdo it, I lose months in crashes. I live in daily fear of losing more quality of life. There is no cure. Very few doctors know how to help. We don't have any approved treatments or diagnostic tests but OMF and many other orgs are working hard to change things for us. People with MECFS fade from their lives and that is why we say Millions Missing. All it took was a virus for #MyalgicE to take me prisoner and become my cage. Are you a #pwME? How much have you lost because of this disease? Chronically yours, Carrie, #MySeveralWorlds
I have moderate to severe ME. MECFS is a serious, multi-system, complex neuroimmune disease. My life has been extremely limited for over a decade. My QOL is low. I'm in pain all the time. Even a spike of emotions causes PEM. There is no cure. We are the #MillionsMissing.
Carrie, #MySeveralWorlds
"I am that clumsy human, always loving, loving, loving. And loving. And never leaving." ~ Frida Kahlo Image by Carrie, My Several Worlds. #InspirationalQuotes #LifeLessons #Reflection #MySeveralWorlds #FridaKahlo
"I am that clumsy human, always loving, loving, loving. And loving. And never leaving."
~ Frida Kahlo
Image by Carrie, My Several Worlds.
#InspirationalQuotes #LifeLessons #Reflection #MySeveralWorlds #FridaKahlo
every single day. How much of a fight it is to simply exist." Credit: Sarah_SC.10 #MySeveralWorlds #ChronicTruths #ChronicallyComplex #TheChronicLife
every single day. How much of a fight it is to simply exist."
Credit: Sarah_SC.10
#MySeveralWorlds #ChronicTruths
#ChronicallyComplex #TheChronicLife
"If you are feeling like a failure because you are unable to accomplish something due to health issues, poverty, or even lack of time and energy remember that you did not fail. The system failed you! You are NOT a failure. We should have a system that supports people that are struggling, not one that leaves them to drown and then labels it an individual failure to distract from the fact that the system is built to benefit the few at the expense of the many." Credit: theferalmountainwitch #DisabilityBenefits #YouAreNotAFailure #MySeveralWorlds #DisabilityInclusion
"If you feel like a failure because you are unable to accomplish something due to health issues, poverty... remember you did not fail. The system failed you! You are NOT a failure. We need a system that supports people who strugge...
@ theferalmountainwitch
#DisabilityBenefits #MySeveralWorlds
"Often we push through illnesses, to simply feel part of life." Illustration of a woman falling over with a wind up key in her back by: Shantel Palmer #ChronicTruths #ChronicArt #MySeveralWorlds
"Often we push through illnesses, to simply feel part of life."
Illustration of a woman falling over with a wind up key in her back by: Shantel Palmer
#ChronicTruths #ChronicArt #MySeveralWorlds
"Chronic pain means chronic "every day for the rest of your life" pain. If you see me out and doing things, it's not because I'm feeling all "better". I'm out because my pain is manageable enough for me to do things. If I look like I'm doing well then walking just fine, it could literally change within minutes and I may have to go lie down ASAP. Even when I'm smiling and laughing, I'm still in pain in multiple areas of my body. Sometimes I will have to leave a function after 15 minutes... My desire to go out forgot about my body's desire to lie down." Credit @the_dead_arthritic Image: illustrations of a skeleton in various poses #ChronicPainAwareness #MySeveralWorlds #ChronicTruths
"Chronic pain means chronic "every day for the rest of your life" pain.
If you see me out doing things, it's not because I'm feeling "better".
Even when I'm smiling and laughing, I'm still in pain in multiple areas of my body.
Credit @the_dead_arthritic
#ChronicPainAwareness #MySeveralWorlds
A nice play on a familiar graphic... I turned it up a notch for us chronic folks! Why you should never offer health advice... Someone's health (illustrated as large circle) What you know about it! (The tiny dot in the circle.) Credit: Carrie #MySeveralWorlds #ChronicallyIconic
A nice play on a familiar graphic... I turned it up a notch for us chronic folks!
Why you should never offer health advice...
Someone's health (illustrated as large circle)
What you know about it! (The tiny dot in the circle.)
Credit: Carrie
#MySeveralWorlds
#ChronicallyIconic
"A few weeks ago a hypermobility specialist told my pal that standing up normally for us is like standing on a moving bus at all times and I haven't stopped thinking about it. no wonder we're so flipping tired. I think I mention in my essay for Allies the way disabilities can be quietly noticeable if you know what to look for and I can always spot a hypermobile person by how we stand and sway and move positions a lot while standing, or sit like a dropped cluster of spiderweb." hux | lizzie huxley-jones @littlehux #EDSAwareness #HypermobilitySpectrumDisordern #MySeveralWorlds
"A few weeks ago a #hypermobility specialist told my pal that standing up normally for us is like standing on a moving bus at all times and I haven't stopped thinking about it. no wonder we're so flipping tired.
hux | lizzie huxley-jones @littlehux
#EDSAwareness #MySeveralWorlds
"You deserve the best, the very best, because you are one of the few people in this lousy world who are honest to themselves, and that is the only thing that really counts." ~Frida Kahlo A young Frida Kahlo in bed with one of her painted calavera #MySeveralWorlds #SelfCare #MotivationalThoughts #SelfLove
"You deserve the best, the very best, because you are one of the few people in this lousy world who are honest to themselves, and that is the only thing that really counts."
~Frida Kahlo
#MySeveralWorlds #SelfCare #MotivationalThoughts #SelfLove
Honestly, the appointments are piling up fast at an average of 2-3 per week because everything is on fire. ✔️ GP ✔️ 50 X-rays this week ✔️ Cardiologist and heart holster for the second time in eight months ✔️ Iron infusions with B12 while waiting for hematologist who will deal APS, with severe iron anemia and B12 deficiency ✔️ Rheum incoming ✔️ Immediate mammogram ✔️ PT who is escalating because I am a high fall risk with an unstable neck and knees ✔️ Colonoscopy lined up ✔️ Rheum incoming ✔️ Looks like triage will happen at all three Ottawa Hospital campuses ✔️ Plus mental health and trauma therapy because although I knew my health was disintegrating fast, others did not understand/refused to acknowledge IT REALLY IS THAT BAD! I saved my life when I left Taiwan because I know I can't do this without a lot of support. I need people who will let me rest and help with food and transport. 🚫 Still no access to primary med that allows me to bend my arms and legs. ✔️ Contacted AbbVie for help. 🚫 Still no idea how I will pay for this. No stranger to this as I didn't have help before and was paying for all my treatments myself ✔️ I filed for emergency assistance this week and got through to OW and ODSP with my Canadian social workers providing a lot of support. There is no time to psych myself up. Things are wrong. I have to push through and then hit hard rest. DOCTOR'S APPOINTMENTS 07:00 Psyching Myself Up For Doctor's Appointment 08:00 09:00 10:00 Doctor's Appointment 11:00 Trying To Calm Myself Down From Doctor Appointment 12:00 13:00 14:00 Credit MyBodylsTryingToKillMe.Com #ButYouDontLookSick #MedicalGaslighting #MySeveralWorlds
DOCTOR'S APPOINTMENTS
07:00 Psyching Myself Up For
Doctor's Appointment
08:00
09:00
10:00 Doctor's Appointment
11:00 Trying To Calm Myself Down From Doctor Appointment
12:00
13:00
14:00
Credit
MyBodylsTryingToKillMe.Com
#ButYouDontLookSick #MedicalGaslighting #MySeveralWorlds
Carrie shares her story of life with D2T #axSpA in #Taiwan. She talks about struggles w treatment-resistant symptoms & how these challenges motivated her to create #MySeveralWorlds, a site dedicated to #PatientAdvocacy @arthritischeryl.bsky.social
🔗
arthritis.theenthusiasticlife.com/2024/12/19/a...
Appropriate for this hell week of medical appointments and red tape paperwork! Come on, Friday! "Always start your day with a positive attitude" Me: Fuuuuuuuuuuuuuuuuccckkk..." Credit Unknown
Appropriate for this hell week of medical appointments and red tape paperwork! Come on, Friday!
"Always start your day with a positive attitude"
Me:
Fuuuuuuuuuuuuuuuuccckkk..."
Credit Unknown
#ChronicHumor #MySeveralWorlds
Many thanks to Melissa at @teamfibro (Fibromyalgia National Health Organization) for featuring my journey with #fibromyalgia.
Learn top tips for #LifeWithFibromyalgia at
🔗
supportfibromyalgia.org/fibromyalgia...
#FibromyaligiaAdvocate #FibroNerds #MySeveralWorlds
#SupportFibro
Mine is the opposite with axSpA and Psoriatic Arthritis. Did you know it takes an average of 30-60 minutes for a person with axSpA to get moving in the morning? We wake up stiff as a board and in a lot of pain. That is why movement is important. This cycle happens throughout the day and is timed around my meds. 24 hours in a day - 24 windows for your body to rebel in many different ways. Do you experience this too? ONE hour in life with chronic pain 8:00 AM - hizzuh 8:15 AM - ugh 8:30 AM - double ugh 8:45 AM - oh no 9:00 AM - flattened Credit: @chronicallymeh #Spondylitis #MySeveralWorlds
Did you know it takes an average of 30-60 minutes for a person with axSpA to get moving in the morning? We wake up stiff as a board and in a lot of pain. 24 hours in a day - 24 windows for your body to rebel. Do you experience this too?
Credit:
@chronicallymeh
#Spondylitis #MySeveralWorlds
My little dwarf with a pick axe - always causing pain! Image credit: Carrie, #MySeveralWorlds
My little dwarf with a pick axe - always causing pain!
Image credit: Carrie, #MySeveralWorlds
What's your favorite technique for creating calm? Mine are deep breathing (nervous system reset), writing, and art. I practice all of these things though. I'd love to hear from you! 12 WAYS TO CREATE SAFETY WITHIN YOUR NERVOUS SYSTEM 1. Practice slow, deep breathing 2. Aromatherapy, scents that promote relaxation 3. Singing, humming, or chanting 4. Dancing, somatic movement 5. A warm bath or shower 6. Nature walk or visit to the park 7. Soothing music or binaural beats 8. Guided meditation 9. Yoga or stretching your body 10. Journaling or a gratitude list 11. Grounding exercise or mindful body scan 12. Co-regulation with someone you trust Credit: NEUROFIT #CalmOverChaos #ProtectYourPeace #NervousSysremReset #MySeveralWorlds
What's your favorite technique for creating calm?
Mine are deep breathing (nervous system reset), writing, and art. I practice all of these things though. I'd love to hear from you!
Image Credit: NEUROFIT
#CalmOverChaos #ProtectYourPeace #NervousSystemReset #MySeveralWorlds
