You know you have pots when felt shitty all day literally couldn't stand without almost passing out. Finally give in to do any extra 250ml bolus bag of Saline before tonights liter. When you suddenly crave more salt so you have hubby make ramen w/ adobo (can't have the packets because of maltodextrin). Literally salt in vein and salt in through mouth. There is a chance was bordering on hyponatremia. I take in 5-8grams sodium day and still can wind up on border. Now to see if sluggish Sally keeps down ramen usually 50/50 chance. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
I’ve had a few messages from people recently with diagnosed or suspected ILO. Over the last 10 years or so speech therapy services specialising in this condition have grown and more and more specialists are out there to help. It can still be quite a miss understood condition especially as it can look similar to an asthma attack or panic attack. However, with careful understanding of the specific symptoms, onset, duration and triggers and growing access to the right investigations, ILO can be expertly diagnosed and treated. Get in touch if you have any questions. ⬇️ #SpeechTherapy #induciblelaryngealobstruction #vocalcorddysfunction #paradoxicalvocalfoldmotion #LaryngealObstruction #VoiceTherapy #VocalRehabilitation #RespiratoryHealth #BreathingExercises #VoiceDisorders #LarynxHealth #ThroatHealth #speechtherapy #SLPeeps
Life has been a bit crazy lately but I am back! Unfortunately I have had to take a break from university to focus on my health but that means life 2.0 is pending. Can’t wait to focus on my recovery and getting the old me back. #chronicillness #induciblelaryngealobstruction #slt2b
Here’s a little about the services I offer and how I work with clients. After working in the NHS for 16 years I left in 2022 to focus on building my private practice. What a development journey it’s been. I love being able to offer the services I do. Sorry re typo on slide 2! *work If you have any questions please get in touch x #voicetherapy #speechtherapy #voice #chroniccough #induciblelaryngealobstruction #speechtherapyservices
Unfortunately so true. I really need to learn to just say I'm fine. People really don't want to know. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Dude all of this. I am just so bloody tired boss. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Ok who took this picture of me. Confess lol. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Please pretty please lol #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
All the bloody time. Just getting dressed registers as a marathon. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Last step of testing to see if some of my gi symptoms are due to vascular compressions especially the severe LUQ to flank. CTA abd/pelvis. Concerned because had anaphylaxis to contrast last time but all pre meds in so fingers crossed. Testing has taken so much out of me. So many breathing techniques trying to catch them. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Yep felt that crash coming. Had abd u/s for vascular compressions and had to do way to many breathing exercises. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Omg celebratory post I can eat a little with ivig and Mirtazipine. Most of time back fires but I can eat. I am able to tolerate some fiber in purees but baby food level 2 not anything higher, small particles, and most meat as long as chew really well if more fat then can handle get crampy and need more digestive enzymes. I am still mostly shakes but if this is all I get I am happy ok maybe a little less pain would be nice lol. So I watch carnivore diet videos not because following goddess my poor gi tract could not handle that much fat lol omg I would die. But it allows me to get ideas when order out and last night instead of my usual 4 piece chicken nuggies and small ff (literally cheap date kids meal lol) I was craving a big mac so had one w/ just meat, big mac sauce, and pickles and small ff. Omg cramping wasn't fun. Probably should have taken 2 digestive enzymes for fat content but I mostly tolerated it. No obstruction and got to eat semi normally. I can't do bread it expands in tummy causing me get sick. Adapt and overcome. It is so nice having the shakes because now can try and healmy relationship with food because now food is for fun. I said try lol. Image by Pngtree https://pngtree.com/freepng/birthday-cap-with-confetti-and-serpentine-explosion-celebration-vector_5574624.html #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
#longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Yep sounds about right. And what is even worse is when doctors don't even give you the chance to ask questions or process during a visit. Then your note is wrong and you didn't even get your questions answered. Leave feeling appointment was moderately useless and thinking all that appointment is going to now cost you spoon/energy wise or worse a relapse and lose more functional abilities. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Let's talk about burnout especially burnout for those who have a chronic illness or disability. The guilt we feel when we are just exhausted and tired of fighting. I have so many appointments coming up, many that I fought and waited so long for. Add in medical ptsd of seeing new providers just added stress. I am in process of trying new treatments that are showing promise, but they take so much out of me. I thought I would be so happy to be able to eat even a little agaib but my brain is going back to old ED thoughts and I'm so scared of gaining weight instead of enjoying the reprieve. Procedures are finally coming up that waited so long for. All this is causing me to be in a push crash cycle that I am having so much difficulty getting out of. I fought so hard to get help in home but even managing all of that has become a full-time job. Add in people quiting and just plain life no wonder I am just plain bloody burnt out. Add in the stress of finances, not being able to help my husband with the store, having trouble affording things I need no wonder burnout has arrived in all it's glory. I am trying to climb out conquer one thing at a time, listen to my body for both rest and nourishment. Trying to surround myself in self compassion and love. Take a step back and really see all the progress we have made. Just keep swimming just at a slower pace with lots of rest. I'll see you ln the other side just takes time, rest, compassion. Rome wasn't built in a day as they say. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
First off, I want to say that I know I’m very privileged, and I cannot imagine how much worse this could be if I was uninsured/disabled/a person of color, etc. I have great health insurance and healthcare, but I’ve had hives since July. After (begging/demanding) a referral in October, I was finally able to see the allergist yesterday. I had low expectations, because I always do. That I would spend a few minutes with a doctor, pay my deductible because it’s January, and then take more meds to mask my symptoms without ever finding a cause. Yesterday, Dr. Shapiro really listened to me, he held my hand and promised to make me better, with fewer meds. He says I’ve become accustomed to feeling a 5, but that he’s going to get me to a 10 and teach me how to stay there. He asked more questions about me than possibly every other doctor I’ve ever seen, put together. He tied a bunch of my symptoms together, and told me my breathing issues have been misdiagnosed and mistreated my entire life. One inhaler alone is a $30 copay a month, and I’ve been on it for a really long time. It has never helped my problem. He gave me hope that I wish I had had at 10, when a doctor looked at me and said “I’m sure you could breathe better if you lost some weight.” Yesterday, I cried the whole way home from his office. Just so appreciative of being heard and validated. Also so angry at how failed I’ve been by the medical system. I’m posting this to remind you, even if it feels useless, keep fighting for your health. Ask questions, keeps pushing, hold hope, and show our kids how hard we have to work to get the treatment we need, so hopefully they’re better prepared. #vocalcorddysfunction #induciblelaryngealobstruction #brokenmedicalsystem #chronichivesbegone #learntobreathe #inhalersdonthelp #treatthebodyasawhole #hope #drpaulshapiro #demandbetter #misdiagnosedfat #misdiagnosedfordecades
This has been one hell of a year. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
My new pcsp (NH pca program for non full-time w/c dependent) is starting today was supposed to be a female but she already quit didn't even neet her. Hopefully Paul willbe amazing and can't wait for my friend Jen to be approved for rest. It is so weird I did this job for 5+ years before becoming a nurse. I never pictured myself here at 42 years old. I am still grieving all that I have lost over past 2 years. I honestly think trying to work on acceptance of right now I had processed the grief. Guess next step in process. Really grieving and accepting what I have lost even if one day they magickally come back. I am not saying I haven't gained so much I have. I answered have. I have a prospective and insight both as a nurse and a human being that I never would have experienced without experiencing this. Like if you asked me today if could wave magic wand and be better, there is a side of me that says f@#$ yeah but then there is side of me that understands for whatever reason I am meant to go through this and learn, grow, and evolve from this. Does it suck yep but I have learned and evolved so much that I wouldn't be the person I am now without this experience. I thought I knew. I thought I understood chronic illness and disability nope I only knew a tiny amount and now only know a tiny amount more. The amount of societal and internal abilism is insane I am still fighting it. I would have never truly learned to listen to my body if wasn’t for being forced to. I maybe tired but I know the true meaning of resiliency and surviving. Now to just get to thriving would be nice. My new reality is so different then I ever pictured. It is going to take sometime. #longcovid #longcovidrecovery #longhaulers #longcovidawareness #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Wish some of the medical providers everywhere including bloody reddit. Nevemind the bloody comorbids. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Omg even on dose of steroids haven't "needed" any Tylenol yet. Still going to take it and wean off slowly to avoid rebound headache/migraines. I am really hopeful we can enjoy our mini Winter Solstice/Yule tonight. Finally really improving instead of 2 steps forward and like 3 oh shit steps back lol. #ivig #iviginfusion #asepticmeningitis #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility
So thankful to be home in my own bed. I will never complain of being uncomfortable again. Being in hospital in negative pressure (either too hot and dying or too cold and dying), plastic mattress doesn't go well w/ sweets from mcas/Aseptic Meningitis, the lights. I am so grateful for the care I received but omgoddess so happy to be home. Still have mcas reactions/ adrenaline dumps just had one which then sets of the Aseptic Meningitis but meds are in, ectrolytes are in and nap time soon I hope. #iviginfusion #ivig #asepticmeningitis #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility
Busted out. Tyler came and got me. On way home. Headache and pain still strong 5. My car was amazing. I was respected both as patient and nurse. It was best care in forever. Priscilla is deaccessed so can have bath once home. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
The care has been amazing here. Nothing like this in NH. This hospitalization almost makes me not scared to go to ER. I said almost. You could be dying and no one would admit you nevermind acknowledge you in New Hampshire. BWFH everyone has understood complex illness and is constantly saying you know your body best. They really treat the patient as part of the team. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
We are pretty sure bad mcas reaction to ivig and mild Aseptic Meningitis if can get off iv pain meds get to go home. Watch and will do steroids only if symptoms don't continue to improve and resolve in couple days. Want to avoid steroids with my adrenals being off. Really crossing fingers for home. #uvig #iviginfusion #asepticmeningitis #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility
Omg migraine cocktail and the benadryl and magnesium knocked me out. Woke up so much better. Still photosensitivity but headache like a dull 5. Spine and neck still tender. Plan is Lumbar Puncture under fluroscopy tomorrow. Really the best care here at Brigham and Women’s Faulkner Hospital. Even if don’t agree with lumbar puncture. They have been amazing to me. Hoping to go home tomorrow. Want my bed my routine lol. #ivig #iviginfusion #homeinfusion #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility
You know what question meningitis gets you even if only most likely aseptic meningitis. A private room after being stuck down in ER for 11 hours so bloody happy. My brain thanks infection precautions. Can't wait to get ready for bed. #ivig #iviginfusion #asepticmeningitis #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility
Being admitted to Faulkner. Just waiting for my bed to be open. Cross fingers single room. Also please pray they don't make me do lumbar puncture and just teeat the aseptic meningitis a known side effect of high dose IVIG. A little upset no way to get a hold of my autonomic neurologist. This will be a discussion on Monday. Overall everyone has been great. Really hoping don't end up from covid-19 from this. Like a minimum 1 in 10 here have covid-19. #ivig #iviginfusion #asepticmeningitis #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility
Being admitted for supportive care. If works no lp. If doesn’t then lp. Not happy about lp. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Definitely Aseptic Meningitis on way to Brigham and Women’s Faulkner Hospital. #asepticmeningitis #ivig #iviginfusion #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis
1st IVIG Gammagard infusion done. Some milfd mcas, migraines, nausea, hot flashes, sweating. But I made it. Still Alive. No anaphylaxis. #ivig #ivport #iviginfusion #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility
So I think I'm definitely allergic to the shower covers. Damn and they kept everything so dry. Still recommend if your skin is nicer then mine. Back to drawing board. So far iv3000 w/ flonase to outer edges and pat w/skin prep helping. Triamcinolone cream to area outside of dressing. Finding a dressing that works and doesn't set off Mally the mast cells now that is fun. Here is hoping can get her to last through Fridays fluids. #honeinfusion #portacath #portcare #mcassucks #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility
First access IV3000 with reg tegaderm over have cats. Had trouble w/biopatch and current needle. It's on there just not pretty. Really hoping this lasts. Still have some things to get used to doing on own. #homeinfusion #portacath #ivport #ivfluids #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility
Made a meme. Last night swore was going to be fluids only. So nauseous, so in pain but then was faced with really good wings and fries So kept picking like a toddler a fry here 1 wing there. Paying price for 5-8 fries and one really yummy wing but was so yummy. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
And I have both sympathetic adrenergic Dysfunction and parasympathetic cardiovagal dysfunction. I actually have sympathetic cholernergic and enteric nervous dysfunction too. Whole autonomic nervous system said f this I'm out after covid-19 lol. It matters which side is acting up. Total miserable party when either all or sympathetic and parasympathetic try at same time- chronotropic incompetence is so fun not. Literally feels like my heart is trying to be jumped like a motor or a lawn mower that keeps shutting off. And the weakness omg the weakness when in chronotropic incompetence is awful. #dysautonomiaawarenessmonth #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
One step closer. Keep them coming. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
I was recently featured on the amazing SWALLOW YOUR PRIDE podcast hosted by @theresarichardslp & got to chat all about UPPER AIRWAY,which is another one of my PASSIONS (along with VOICE, videostroboscopy, fitness, vocal injury prevention, research, head/neck cancer, & learning...but that list goes on & on)😉 . In the podcast, we cover A LOT about ILO (inducible laryngeal obstruction), EILO (exercise induced laryngeal obstruction), BPD (breathing pattern disorder), ILS (irritable larynx syndrome) including laryngeal hypersensitivity& hyper-responsiveness, DB (dysfunctional breathing), the International Airway & Breathing Conference (that I attended in June), differentiating upper airway conditions from asthma, the importance of using endoscopy for biofeedback to teach with your exams & therapy, & a variety of diagnostic & therapeutic interventions targeting upper airway & breathing function. Some mentioned therapy-related approaches include education (re: the larynx & its role as gatekeeper/protector, teaching the patient about their upper airway via endoscopy & biofeedback), teaching breathing recovery techniques & how to gain control over the airway (especially during biofeedback), improving the laryngeal environment, identifying triggers & improving sensory awareness, managing chronic cough & throat clearing patterns, modifying breathing techniques for specific sports/activities, desensitization training for ILS, reducing the heightened sensory receptors in the larynx, EILOBI techniques for use during EILO episodes & high intensity exercise, importance of mental skills training for athletes w/EILO (shouting out Erika Westhoff https://ewperformance.com/), importance of fullness/depth of breath (vs shallow/inefficient breath), Buteyko breathing method, benefits of nasal breathing, importance of expanding lung capacity, importance of lower-focused & 360 degree breathing, & the myriad of benefits achieved from using respiratory muscle strength trainers &/or resp. muscle trainers. . . SWIPE to learn about EDAC!➡️ . . SWIPE to learn some of my airway-related recommendations!💨 . So, check out the podcast! I hope you enjoy it! Reach out if you have any ?s...🫶🏻🗣️
Add everyday waking up wondering if going to lise another basic life function or if today is going to be a good day. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Fellow Healthcare providers free ceu's for health care providers on long covid-19 and post viral illness. Fellow patients maybe something can share with healthcare providers who are open to learning. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
It is this weird feing of finally answers for why feel so shitty but also same time like damn I don't need anymore rare shiny Pokémon. My long covid bingo card is full. I won full card flipped it over in anger. I'm good lol. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
I am a recovering mostly non-purging bulimic. When did purge was more diet pills, exercise, diuretics. I hate vomiting especially after had hyperemesis gravidaru with both my pregnancies. Not saying never did it but was not my perferred method. For years thought I was no longer a bulimic until 3 years ago after my head injury figured out I still was had just switched to mostly non-purging. Anyway I say all tjis to show many eating disorders and disordered eating comes in all shapes and sizes. We both as a society and as healthcare professionals need to be careful commenting on people's weight, food intake, fitness or health level because we do not know where they came from or what they have gone through. The long covid-19 post viral mcas, gastroparesis and gi dysmotility has been so bloody triggering for me. In beginning was the rumination but that stopped but now it is the fullness, the lack of appetite, the constant nausea and vomiting, the restrictive diet of safe foods and mostly liquid diet, the doctors, society bringing up weight loss - funny when was taking in only 800-1200 of not my own doing wasn't losing weight but now 1700-1800 calories and proper protein I am. My goal right now is to norish my body to the best of its ability. To hopefully avoid surgery and tubes (unfortunately port is definitely in future for fluids and possibly ivig). To keep my gi working to best its ability, decrease pain and distress, I am really trying hard not to focus on weight loss but on norishing my body to best of its ability. Unfortunately daily weights to monitor fluid and electrolytes balance, food recording to make sure reaching nutrition goals, and my gi dysmotility symptoms are very very triggering. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #bulimarecovery #eatingdisorderrecovery
Mid-morning snack of champions. What's you go to easy to prepare/all ready prepared gastroparesis/gi dysmotility foods? I tried regular food really chewed last night ended up in labor all night. So back to shakes, pureed, and really small particles. Looking for some variety. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
I had mentioned before how can use just your regular stats in your futbess tracker for pacing and trying (I said trying) to prevent crash or flare especially if have pem/pese, me/cfs, or post viral illness, long covid w/ pem/pese. So last week was very stressful for me as was trying to make sure my daughter was ok. You can see the dip in my hrv,my peak when was going to crash but was good girl and rest and the leveling off. I am still borderline and need yo be careful but this is a quick rudimentary way to check in with yourself and your pacing when you haven't been able too. Really love welltory and elitehrv too. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles #hrm4pacing
Did you know for majority of people disability isn't something far off it is something that happens to almost everyone. The question isn't if it is when? Getting older, poor healthcare outcomes, an accident, inadequate care, lasting effects of illness, 1 in 5 long covid, work accidents, etc. Yet for everyone of us it seems to be this thing that happens to others, not us. This thought feeds our external and internal abelism. I didn't know how bad things were until it happened to me. And honestly I can still walk short distances, transfer, get out and maneuver my wheelchair others can not. I have previous knowledge as a nurse others do not. The health disparities for disabled, bipoc, lgbtqa+, neurodivergent is getting people killed and needs to stop. It will most likely be you one day on the other end of disability discrimination or inaccessibility. I hope not. Just remember it is mostly likely not a if but a when. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles #medicaldiscrimination
Yale Listen Study is looking for healthy volunteers for their long covid study. If interested reach out at [email protected] #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Long covid-19 or Post Acute Sequela of Covid-19 is real. It is a spectrum of an illness. Almost 1 in 5 (7.5٪) adults who have had Covid-19 meet criteria for long covid. 1 in 10 covid-19 infections will result in long covid-19. Higher if hospitalized (50‐70%). There are ways to mitigate symptoms with the right team and combinations of treatments. So many are undiagnosed and gaslit despite the AMA, CDC, NIH, AAFP trying to get the word out to physicians. Unfortunate it is on us to advocate for ourselves. (Sources in comments) #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Sorry earlier somehow didn't post hr trends when was showing heart rate monitoring 4 pacing. You can see the up trend. For me nany timesvit is the change in rhr 1st then the dip or spike in hrv. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
So for about a year or so I use heart rate monitoring for pacing to manage my long covid-19, me/cfs, even a little my dysautonomia/pots. I use a couple tools @appcardiogram, @welltory, and @elitehrv for day to day monitoring and trying to catch early before crash. But wanted to show you even using your basic hrv and rhr trends in your tracker you can predict when heading for a crash ir flare. So for me this means either spike or curve up or down in hrv or rhr. I have been without my iv fluids 5 days now because of staffing issue at infusion center and going to Boston today for appointments. You can see the rise in rhr on Sunday that was when I overdid it. And the rise in hrv on Monday. This is my sign need to cut back and listen. There are other ways use heart rate monitoring 4 pacing but this one of the quickest ways for me to go oh crap need to be good girl. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
When those with Chronic Illness or Disability talk about acceptance of their abilities or the here and now; it doesn't mean we are giving up, losing hope, or not continuing to try. What it means is we are putting down the guilt of not being able to do what we used to, what we want to, and what we wish we could do? We are trying to learn to work within our abilities. Stop the crash, burn, flare cycle. We have tried everything you want to recommend to us can almost guarantee it. We are doing what works for us. Someone recently said you aren't a disabled nurse. I am right now. I can barely survive day to day. I can only wash my hair every 1-1.5 weeks without ending up in bad adrenaline dump me/cfs flare. Trust me if could flip switch tomorrow and be better I would. Disabled and assistive devices are not dirty words. Needing and accepting help isn't dirty either. I am working so hard to accept right now in a body and mind I do not recognize. Also just because I am disabled doesn't mean I'm not strong (eventhough me/cfs keeps taking more physical strength away). I may have to lift my w/c in to my car and almost die doing it but that doesn't mean I can walk more the 5-10min without passing out. Ambulatory Wheelchair users exist. Actually they are the majority of wheelchair users. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Same @vixenhearrt and @doc_with_longcovid lol #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
So lies to you. You will pay and pay dearly. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Story of my life now lol. Trying to keep enough down to stay out of park n die. Hoping someone cancels their infusion tomorrow so can get in. Feeling crappy. I miss eating without pain or getting sick. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #sfn #smallfiberneuropathy #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Previously known as PVFM, Inducible Laryngeal Obstruction can be tricky to diagnose. This free research review guides you through differential diagnosis of ILO, including questions to ask, treatments to investigate, and conditions to rule out. You'll also want to download the paper from Sandage et al. from ASHA--it includes a comprehensive spreadsheet to differentiate between ILO and its many mimics! Anyone can read this free research review at our #linkinbio. Members of The Informed SLP can earn 7 minutes of ASHA CE credit. The research: Sandage et al. (2023). Inducible laryngeal obstruction differential diagnosis in adolescents and adults: a tutorial. American Journal of Speech-Language Pathology. #informedslp #voicetreatment #medslp #induciblelaryngealobstruction #SLPeeps #voicetherapy
My Chronic Illness coloring book🤣🤣🤣🤣 #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #hypopituitarism #diabetesinsipidus #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
On the 29th September 2022 I was diagnosed with paradoxical vocal fold movement, a rare form of vocal cord disfunction. I have created this account to try and help raise awareness for my condition to and to help others going through the same condition feel less alone. #paradoxicalvocalfoldmotion #induciblelaryngealobstruction
Today marks the end of a chapter in the blue scrubs. I’m so grateful for the wonderful clinicians I’ve worked with over the past 16 years in acute care. There have been triumphant days and inconceivably difficult days, all of which have made me the clinician that I am today. I’m looking forward to having more time and space for family and growing @adelaidevoicetherapy to be a flourishing practice that can help more people achieve their goals for voice, singing, breathing and swallowing. 2023 is going to be a fabulous year! #voice #sing #singer #vocalist #vocalhealth #speechpathologist #slp #adelaide #swallowing #upperairwaydisorders #induciblelaryngealobstruction #vocalcords #chroniccough #voicetherapy #noscrubs #voiceclinic #voiceslp #acuteslp #acutecare #medicalslp
A final Voice Works session with 40+ members of the Speech and Language Therapy Team. We presented the evidence of our work with and for ILO patients - how singing related breathing, posture and vocal exercises benefit this patient group. A brilliant collaboration between Arts in Health, Speech and Language, University of Sheffield's Department for Music and freelance singer & voice coach Michael Bonshor. Thanks to @aceagrams and @sheffhospitalcharity #singingforwellbeing #induciblelaryngealobstruction #artsforhealth #artsinhealthcare
Very excited for the first day of Adelaide Voice Therapy today. It’s been 17 years in the making! Looking forward to helping the Adelaide community with all things Voice, Upper Airway and Swallowing 🎙🗣🥤 #voicetherapist #speechpathology #swallowingdisorders #vcd #voice #chroniccough #singers #vocalist #slp #vocology #vocologyinpractice #adelaide #vocalcords #voicerehab #dysphagia #induciblelaryngealobstruction #swallowing #speechpathologist
This fabulous collaboration between Arts in Health, Karen Esposito from our Speech & Language Therapy Department, and the Psychology of Music Department @theuniversityofsheffield is coming to an end next week Here Karen explains how the kazoo can help you with breathing and voice projection. "A kazoo can be an extension of your airway and using one doesn't put any pressure on the larynx" This project has been for the benefit of patients who experience Inducible Laryngeal Obstruction - a condition that affects the use of the voice with some amazing results that we will publish soon. Thanks to @aceagrams and @sheffhospitalcharity #induciblelaryngealobstruction #voiceproduction #artsforwellbeing #artsinhealth #singingforwellbeing
|ILO| What a fantastic 3 day course on inducible laryngeal obstruction (ILO), hosted by the Bergen ILO group. ILO describes an inappropriate, transient, reversible narrowing of the larynx in response to external triggers. ILO is an important cause of a variety of respiratory symptoms and can mimic asthma. Patients suffering from EILO (exercise induced laryngeal obstruction) are often misdiagnosed with exercise induced asthma and prescribed medication, which unfortunately doesn't work. Accurate diagnostics are key, so appropriate treatment strategies can follow. The conference covered updated treatments (pharmacological and non-pharmacological), different perspectives from multidisciplinary team members, new findings, free communications, workshops, thought provoking panel discussions and so much more! Highly recommended for those interested in the field to join us next year 🙌🏻🤓🌬 . . . #ilo #induciblelaryngealobstruction #eilo #exerciseinducedlaryngealobstruction #respiratoryhealth #lunghealth #respiratoryoptimization #lungs #respiratory #pulmonary #breath #breathe #breathing #physiotherapist #physiotherapy #physiotherapist #cardiorespiratory #cardiopulmonary
Today saw the culmination of the first block of our Voice Works project. The first group of patients experiencing Inducible Laryngeal Obstruction (ILO), met for the first time in person after weeks of online sessions. Dr Michael Bonshor has guided the group through creative singing and breathing workshops and patients have reported significant benefits. Sound recordings from today will be transformed by composer Chris Bevan into a sound based artwork, to be showcased at the University of Sheffield's @festivalofthemind later this year. A collaboration between Arts in Health, Speech and Language Therapy and the University of Sheffield, this project has been funded by @aceagrams @sheffhospitalcharity and @theuniversityofsheffield We hope the learning from this project may result in new therapies for patients with this condition. Huge well done and thank you to all involved! @tuosmusic #artsforhealth #artsforwellbeing #induciblelaryngealobstruction #voice #singingforwellbeing
Drawing the main upper airway symptoms together to illustrate that they commonly coexist. In my role I see many asthma patients who also have one or multiple upper airway symptoms. The normal function of the larynx includes: 🔹Airway protection 🔹Airway clearance 🔹Phonation 🔹Swallowing Clinical manifestations arising from laryngeal dysfunction include: 🔹ILO or Inducible Laryneal Obstruction is an inappropriate, transient, reversible narrowing of the larynx in response to external triggers. 🔹Muscle tension dysphonia is a change in the sound of the voice due to excessive muscle tension in and/or around the larynx. 🔹Pseudo dysphagia is a feeling/fear of choking despite no objective oral or pharyngeal abnormalities or dysfunction, often related to sensation change or a traumatic upper airway experience. 🔹Globus is a sensation of a persistent lump in the throat with normal anatomy. Painless but uncomfortable and often leads to throat clearing. 🔹Chronic cough - persistent dry cough for more than 8 weeks without physiological cause and refractory to treatment. Think of these clinical symptoms as forms of laryngeal hyper responsiveness, an exaggerated response due to laryngeal sensitization from 1. precipitation events (Respiratory infection) 2. aggravating comorbidities like reflux, asthma, rhinitis 3. external triggers like change in temperature, perfumes, air fresheners, chili, smoke. If you’d like to know more or have any questions please comment xx
Part 3 of my mini series on conditions I treat as a speech therapist. ILO or I-L-O or Inducible Laryngeal Obstruction. Formerly known as vocal cord dysfunction or Paradoxical vocal cord movement disorder. Check out: Christensen, PM et al. ERS/ELS/ACCP 2013 international consensus conference nomenclature of inducible laryngeal obstruction. Eur Respir Rev 2015; 24: 445-450. ILO is when there is a sudden and temporary narrowing at the level of the larynx in response to a trigger such as a certain smell or change in temperature. It can be the vocal cords that close inappropriately or it can be the supralaryngeal area that obstructs. It causes a range of respiratory symptoms that can mimic asthma but there are some clear differences. ILO starts suddenly and ends quickly, it is throat focused, it usually creates inspiratory difficulty and stridor and it is not aided by asthma reliever medications. ILO is usually managed with speech therapy intervention which includes provocation scoping to diagnose what is happening in the larynx when a person is symptomatic. Treatment includes coping strategies, breathing techniques to reverse the incorrect movements during an episode, laryngeal care information, muscle relaxation, voice work…. KEY 🔑 READING: Haines, Hull & Fowler Clinical presentation, assessment and management of Inducible Laryngeal Obstruction. 2018. Otolaryngology Vol 26;3 Hull, JH et al. Laryngeal Dysfunction: assessment and management for the clinician. American Journal of Respiratory and critical care medicine. 2016 Vol 194: 9. #induciblelaryngealobstruction #vocalcorddysfunction #ilo #paradoxicalvocalcords #speechtherapy #upperairway #upperairwaydisorder #larynx #laryngealfunction #chroniccough #dysphonia
In this mini series I will be talking about the different symptoms I work with as a voice specialist speech therapist. 🔹DYSPHONIA 🔹 There are multiple different definitions of dysphonia online! Some I really don’t like or agree with. These two I do. Dysphonia is a symptom, not a diagnosis. Dysphonia is caused by a disturbance to the function of the voice box and or vocal cords. There are many different diagnoses that can cause this disturbance. They can be categorised into four main types: 🔹 Structural causes 🔹 Inflammatory causes 🔹 Muscle tension causes 🔹 Neurological causes The classification of voice disorders has been researched extensively and there is more exciting work being carried out as we speak with the aim of standardising how we diagnose voice disorders, labelling the cause of the dysphonia. #dysphonia #voicetherapy #laryngealdisorders #voiceproblem #voicechange #voicedifficulty #laryngealinflammation #voicetreatment #speechtherapy #earnoseandthroat #throatdisorders #chroniccough #vocalcordpathology #musceltensiondysphonia #vocalcordnodules #functionalvoicedisorder #laryngealswelling #copingwithavoicedisorder #induciblelaryngealobstruction #vocalcorddysfunction #vocalcordparalysis
Our Voice Works project finally started after a 2 year delay due to the covid 19 pandemic. Patients @sheffieldhospitals who have been struggling with a condition called Inducible Laryngeal Obstruction (ILO) are receiving creative singing and breathing workshops from Dr. Michael Bonshor (pictured) supported by @aceagrams @sheffhospitalcharity @festivalofthemind @theuniversityofsheffield @tuosmusic #artsforhealth #artsforwellbeing #induciblelaryngealobstruction #voice #singingforwellbeing
Over the last 2 years I have been working more and more with BPDs with an upper airway and long Covid caseload. Im fascinated by breathing and I recently went to a brilliant physiotherapy led study day all about it. A breathing pattern disorder is an alteration in the normal biomechanical pattern of breathing. When looking at breathing patterns we observe and assess the muscles used, posture, the breathing patterns, rhythms and speed and the channel used to breath e.g. nose or mouth. 6-12% of the population have a breathing pattern disorder. 30% of asthmatics do. It is more likely to affect women than men. What is healthy breathing: 💙Nasal 💙Uses the diaphragm muscle 💙Quiet 💙Respiratory rate 8-14 breaths per minute 💙350-500mls of breath per breath (imagine a baked bean can or a small bottle of water) 💙Inspiratory expiratory ratio 1:2 💙Regular, rhythmical and relaxed 💙Passive exhalation Would you like to see further posts about breathing? I’ll flag up some incredible people to learn from and other bits and pieces in my stories today. #breathingpatterndisorder #bpd #nasalbreathing #dysfunctionalbreathing #healthybreathing #diaphragm #respiratoryspeechtherapy #respriatoryphysiotherapy #breathingpatterns #speechtherapy #longcovid #dysphonia #induciblelaryngealobstruction #breathing
ʜᴀᴘᴘʏ ᴍᴏɴᴅᴀʏ After having a busy week last week and doing a lot over the weekend it’s a take it easy day as I’m mentally and physically drained, had a really rough night last night, it was one spent by the toilet but better this morning, then had hospital for some speech therapy for the old ILO (spazzy vocal cords) so I can do the normal function of actually breathing properly 🤣 #chronicillnesslife #pots #vocalcorddysfunction #induciblelaryngealobstruction #adayinthelife #autoimmunedisease #autoimmuneawareness
As much as I like to be about positivity constantly on here and always look on the bright side I also like to be real and I’ve always been open about my illnesses, I’m never a poor me person I just get on with illness and always making jokes about it but then some days are just too much, like right now, over the bank holiday weekend I went out for a long walk in the sun and then went for drinks with my friend, just normal things a 25 year old should be able to do, I only had 2 alcoholic drinks and not even strong ones, I was only out for 4 hours but today I’m suffering, and right now I am thinking poor me and sat thinking why me, why am I the one that has to deal with umpteen chronic illnesses, and has had to since a young teenager, I lay here right now by the toilet, my feet and ankles swollen to within an inch of their life, chronic pain all over my body, my blood pressure drastically low, extreme sickness and dizziness, my vocal cords having such a spasm they’ve closed up and I’m struggling so hard to breathe, lips swollen up, hives all over, and having just overcome a really bad seizure, im emotionally and physically exhausted. What’s making everything worse is I’m so underweight but no matter how hard I try and how much I try to eat and force myself to eat nothing is working, I’m pretty sure I’m not absorbing any of the nutrients from foods and I’m just losing more and more weight. It’s scary because I can’t get better or to a stable point while I’m so underweight and so malnourished. Tomorrow I’ll wake up and probably be my upbeat positive self again but for now I just wanted to show how awful it can be living with these horrific conditions. What’s so poor is that all these autoimmune conditions are so debilitating that they make living a normal life impossible at times. So much awareness needs to be raised! Everyone needs to know what these are and what they cause! So many could be living with them and just suffering in silence. #pots #posturalorthostatictachycardiasyndrome #eds #elhersdanlossyndrome #mastcellactivationdisorder #induciblelaryngealobstruction #vocalcorddysfunction #asthma #endometriosis #autoimmunedisease #autoimmuneawareness #spoonie
Olympus Medical recently ran a fantastic study day about Complex Breathlessness with a focus on the management of Inducible Laryngeal Obstruction. Claire Slinger is a speech therapist at the Preston Complex Breathlessness Clinic. Here she talks to a patient Janet about her experiences of living with ILO and the challenging diagnosis process. Give Olympus Medical UK @olympusmedicalukie and Claire Slinger a follow on Twitter if this subject interests you. Xx #eilo #ilo #livingwithilo #induciblelaryngealobstruction #vocalcorddysfunction #speechtherapy #specialairwaysclinic #upperairway #upperairwaydisorder #inhalationstridor #exerciseinducedasthma #larynx #voicedisorder #continuouslaryngoscopyduringexercise #inhaledmedications #asthma #difficulttotreatasthma #athleteswithbreathingproblems #breathingpatterndisorder #dysfunctionalbreathing #adolescentathletes #competitiveathletes #performanceanxiety #competitiveaport #complexbreathlessness
As noted during my fun episode with @ootvoicebox podcast, AIR IS LIFE. For real though, IT IS…& it is the FOUNDATION for your voice. So what happens when your lungs are healthy but you can’t breathe right? The larynx/voicebox plays a HUGE role in healthy breathing patterns, as it is a highly sophisticated “entrance valve to the lungs & also the narrowest passage of the airway tree” (Roksund, O.D. et al., 2017). READ ON for a ton of great info on ILO (see below & swipe for some), but it all doesn’t fit here so check out this week’s blog or the Facebook post for the full run-down!! . . Inducible Laryngeal Obstruction (ILO) describes a narrowing or inappropriate obstruction of the true vocal folds (VF) &/or the supraglottic structures (above the VFs) in response to a trigger or stimulus. In healthy people, the VFs are ABDUCTED (open) during inspiration (inhale), & this is followed by a slight ADDUCTION (closing) during expiration (exhale), allowing air movement to & from the lungs. When ILO is present, there is a brief adduction of the VFs during inspiration—sometimes noted with audible inspiratory sounds, exacerbated during exercise, &/or caused by a supraglottic obstruction. . . **YOU CAN HEAR HOW EXCITED I GET IN THIS VIDEO BECAUSE THE PATIENT STARTED WITH ILO INCLUDING VERY MINIMAL OPENING OF HER AIRWAY WHEN SHE WAS TRYING TO INHALE, & WE RE-ROUTED THE DYSFUNCTION WITH A FEW DIFFERENT TECHNIQUES IN A PROGRESSIVE FASHION & ENDED UP WITH ADEQUATE OPENING & CLOSING OF HER VFS, AN IMPROVED VOICE (SHE WAS APHONIC BEFORE FOR MONTHS), & IMPROVED CONFIDENCE/EASE RELATED TO BREATHING IN GENERAL. This is my goal with all ILO patients (as capturing the ILO & utilizing biofeedback & therapy techniques to relax the mechanism & re-route the breathing pattern on endoscopy provides such monumental feedback for the patient), but it’s not always possible (hence why I was so grateful this happened & felt compelled to share)! During & after diagnostics, the therapeutic process was already initiated & a transition of ownership/control of breathing was handed back to the patient before they walked out the door. Always a goal & such a great learning experience for the patient.** 🗣
Read the current literature and understanding on #InducibleLaryngealObstruction in the Paediatric Population ⠀ ⠀ Click here to find out more: https://buff.ly/2QFPgc0⠀ ⠀ European Respiratory & Pulmonary Diseases. 2018;4(1):45–8⠀ ⠀ Authors: Marta Soares, Alexandra Rodrigues, Mário Morais-Almeida⠀ ⠀ Inducible laryngeal obstruction (ILO) is a complex entity and its exact mechanisms are still unclear. It is characterised by transient and reversible narrowing of the larynx in response to external triggers, resulting in symptoms such as #cough, #dyspnoea and noisy breathing. The prevalence of this condition in adult or paediatric populations is uncertain. Management of ILO starts by establishing an accurate diagnosis, and treatment includes control of trigger factors, breathing and relaxation techniques, and speech and respiratory therapy. ⠀ ⠀ The aim of this article is to summarise current understanding and provide a review of the literature of ILO in the paediatric population.⠀ ⠀ This content is intended for Licensed Healthcare Professionals only
1/2 vaccinated against #covid_19 Yesterday/last night was HELL! I had every side effect on the list except one sizeded droopy face and anaphylaxis. BUT I wouldn't have changed anything. #covid_19 #chronicillness #chronicillnessawareness #asthmasucks #eosinophillicasthma #induciblelaryngealobstruction