Discover and read the best of Twitter Threads about #ChronicIllness

Most recents (24)

I’m covid+.

My precautions have been extreme.

I’m immunocompromised, functionally impaired, & medically complex. My husband has diabetes, & nervous system/vestibular damage due to a bad med reaction. I’ve been concerned about outcomes for both of us. 1/ Image
I’ll try to answer the questions here that I always wonder abt when I read others who have tested positive after saying they’ve been “so careful”. Diff ppl have different ideas of “careful”.

All in all, we have all the conditions to protect ourselves.

We have no kids. 2/
I can’t imagine losing more function to my already compromised life, so I’ve worn n95 & safety glasses w side shields. I actually wear a double cloth mask over my #envomask to be less conspicuous.

Since 3/20, all med appts have been online, except for 2 derm visits long ago. 3/
Read 32 tweets
🧵 The @DEAHQ @CDCInjury @HHSGov @CMSGov interference in the practice of medicine is having devastating consequences for people who have #RareDisease Complex #chronicillness or a #Disability that requires a controlled substance to maintain their health
Fear, not Patient well being is determining prescribing practices.

Patients like my daughter are caught in the riptide of Medical Professionals attempting to avoid unwarranted persecution by Law Enforcement.

Unable to discontinue the only Seizure RX
that has stabilized her condition & not caused severe life threatening adverse reactions.

Since the @CDCgov Guidelines were issued by @CDCInjury in 2016, my daughter's life has been put in jeopardy repeatedly. She is a rare disease patient with multiple overlapping chronic
Read 12 tweets
I used to declutter every three to four months, until #chronicillness happened. When I came back to our home in NL after my treatment in India, I was shocked to see how it looked. It was nothing like the home that @anandkumarn & I had lovingly built together. 1/
Still, I didn't want to jeopardise my hard worn health (I hesitate to call it recovery as I'm in bed 50% of the day - I was 90% in bed before). So with the help of a lovely lady who is helping us, I've been tackling inch by inch. 2/
It is starting to look like our home slowly. Truly decluttering this time & giving stuff away instead of just putting them in a place I can't see. We are redoing our bedroom to look less like a patient's room & a place that I will truly love to be in. 3/
Read 4 tweets
"Your test results are normal"

Medical professionals, please ask yourself: at which point would you stop testing?

I have put a ⛔ where I am aware many doctors have stopped with patients.

🧵

#LongCovid #MECFS #vaccineinjuries #chronicillness #TeamClots #MedTwitter
A patient goes to the dr with a range of systemic symptoms that dont neatly fit current diagnostic criteria. Symptoms started rapidly & strongly a few hours after the COVID vaccine; however, the reason for the problem isnt important for this lesson



The doctor does some tests
Hb, RBC, haematocrit, MCV, MCH, platelet count, WBC, neutrophil, eosinophil, basophil, lymphocyte, & monocyte count. Mean platelet volume is elevated but this isnt reported & is instead hidden in the lab records. “Your test results are normal” the doctor says

Read 18 tweets
#chronicillness Twitter to doctor advocates
-you’re only speaking out because you’re sick yourself
-now you know what it’s like (implication- all of us neglected & psychologised patients before. NOT true- some of us just did our best within a system stacked against us)
1/n
-you need to mention ‘x’ disease as well. (We’re learning as fast as we can. Remember we are sick too. Some of us are bed-bound lying in darkened rooms. You know how much energy it takes to speak up)
2/n
-don’t dabble in areas you know nothing about. (In my case #Palestine. Being a chronic illness advocate doesn’t make me a one-trick pony. I’ve visited the West Bank & witnessed firsthand the horrors of #IsraeliApartheid. So I will speak up- I’m not here for anyone’s comfort
3/n
Read 5 tweets
Hashimoto’s Thyroiditis

Over 95 percent of today’s thyroid disorders, including Hashimoto’s, stem from a viral infection. (The other 5 percent come from radiation.) That virus is Epstein-Barr (EBV).

After a long incubation period—typically in the liver—EBV.. [1/4]
..begins its journey to the thyroid, and then enters into the tissue there.

Over time, the viral load will weaken the thyroid, making it less effective at producing the hormones the body relies upon. [2/4]
As time passes, in many people the EBV will also slowly inflame the thyroid, leading from a case of hypothyroidism to a case of Hashimoto’s thyroiditis. [3/4]
Read 4 tweets
"Data on l#ongCovid, reaches from the past and further into the future, as scientists attempt to gain a better grasp of the collateral damage the virus has left in its wake after infecting roughly 60 percent of the US population in the past two years."

tinyurl.com/4pk4w2pr
" Some of those experts are still keeping tabs on cases as a general sign of the trends on the ground and because of the potential effect of long Covid to have a lasting effect in even mild cases." #longocovidkids
#COVID19's long-term consequences is on #longCovid. Such long-term symptoms after an infection have loomed large over the pandemic, inspiring fears that a mild case of Covid-19 could still end up affecting patients for months after they ostensibly recover."
Read 6 tweets
Today, @AsthmaIreland made a public statement in support of Minister @EamonRyan's proposed Solid Fuel Regulations. We called on all parties to support the regulations in a bid to end the 1,300 premature deaths caused annually by fine particle emissions from burning solid fuels.
The new regulations would ban smoky coal and wet wood, and prohibiting the commercial sale of sod turf, will save lives, but provide for continued turf extraction by those with turbary rights and distribution within small communities. @Dept_ECC
Air pollution can cause as well as exacerbate #chronicillness like #COPD, #asthma, heart disease and #stroke, #cancer, #diabetes and #dementia. Irish clinical research also links spikes in air pollution with increased hospital admissions for asthma and heart disease @roinnslainte
Read 10 tweets
1/20
🧵Thread - post-Covid cardiovascular issues incl. tachycardia, arrhythmia, POTS, inflammation.

Peer-reviewed & not p-revd. Different perspectives & findings.

This is not medical advice.
#Health #hearthealth #CovidIsNotOver #LongCovid #longhaulers #NEISvoid #chronicillness
2/20
Long COVID-19 and Postural Orthostatic Tachycardia Syndrome- Is Dysautonomia to Be Blamed?

frontiersin.org/articles/10.33…
3/20
In Conversation: Long COVID's cardiovascular implications

medicalnewstoday.com/articles/in-co…
Read 21 tweets
I've been thinking again about how folks don't understand being too sick to do the things they recommend and I remembered I already wrote about it in 2018 when I made a list of shit people have said I NEED to do.
monettawilson.com/how-to-be-huma…
Self massage and yoga, for example are great and will most likely make you feel better except there's times when even gentle yoga is too strenuous and not everyone has the mobility, dexterity or strength to massage their own body or do yoga.
What a lot of people don't get is that a lot of chronic illnesses are degenerative. When you're diagnosed you know you won't be cured but no one tells you that you're going to get worse and it everyday brings new challenges.
Read 10 tweets
(1/15) PEM explained
When I woke up the day after jogging, I felt terrible, although terrible is probably an understatement. It is a feeling that healthy people can hardly imagine. It feels like having a flu, a hangover and a jetlag at the same time.
(2/15) At that time I wasn’t able to make the connection between yesterday's jogging and the terrible feeling the next morning.
Today I know that I experienced my first PEM back then.
(3/15) What is PEM?
PEM stands for Post External Malaise and refers to the worsening of symptoms after minor physical and/or mental exertion.

PEM occurs immediately after a performed activity or with a latency of approx. 12 to 48 hours thereafter and may persist for several
Read 15 tweets
#LongCovid recovery story is long but short notes here:
#POTS confirmed with heart rate variability test & started on Ivabradine.
#MCAS treated based on clinical symptoms with Desloratadine, Famotadine, Montelukast-Cetrizine
#autoimmune assays done - #rheumatoidarthritis
Started on Methotrexate after all vaccinations. GI motility treated with Prucalopride.
Lung perfusion abnormalities but no cause detected (#microclots in blood) - treated with budesonide + tiatropium inhalers, ipratropium nebuliser & supplemental oxygen. #NEISvoid
Weekly IV infusions with Saline at home. Pulmonary rehabilitation. Eyes checked - connective tissue degeneration- tear film corrected with refresh tears & gel, special glasses & convergence exercises given.
Read 7 tweets
1/🧵 I think Chris Rock wouldn't have made a joke about Jada's illness if more folks were educated about the high prevalence of autoimmune & other chronic disorders.

#chronicillness #Spoonies #autoimmune #Alopecia #women #health #ChronicPain #chronic #illness #SickNotWeak
2/ As a woman who lives with multiple immune-related disorders, when a comedian makes a joke about chronic illness, I feel unseen...not just for me, but for all my fellow #chronicfolks. Does Chris Rock have any idea what Jada goes through to live with alopecia? Probably not.
3/ As a country, we need to create more dialogue around chronic illness, and especially autoimmune diseases. They are so prevalent yet they are usually talked about in whispers....'Oh, she has Crohn's.' Cancer used to be spoken about in hushed words, too.
Read 5 tweets
#neisvoid DO NOT pay full price for medical bills if you can at all avoid it. You can probably avoid it. (Not always, but worth a shot.) A thread:
The most beginner tip I can give is (if you're able) ask for an "early pay" discount as soon as you get the bill. I've had offices that had never given a discount before do one just because I asked. #LongCovid
Next level: ask if the doctor can code tricky tests or procedures in a way that insurance is more likely to cover. Rifaximin for SIBO is $3k. Rifaximin for diarrhea is totes covered. Correct coding matters. #chronicillness
Read 10 tweets
While #science thought us that we can even cut and paste #genes with #CRISPR technology…even with that we only influence 3% to 5% of #chronicillness. The rest depends on #how you #live your #life!!! So how do we #SelfRegulate our #body?
1. Good #sleep is more important than most think! What happens during sleep? The fluctuation of consciousness…that we call the waking state. But in many wisdom traditions of the world, the waking state is merely a lucid dream that consciousness is having…
Read 41 tweets
Two years ago today that I contracted a mild case of #CV19, before vaccines, before masks, before lockdowns. My life has been turned upside since by #longcovid with waves of frightening, debilitating symptoms, desperation and deterioration in mental and physical health 1/12
From March 9th 2020 my health went downhill - constant crushing chest compression and pain, a constant feeling of suffocation (covid strangle), joint and muscle pain, fever, dizziness, cognitive impairment, ruinous insomnia, terrible gastro-intestinal issues (nausea, reflux) 2/12
The worst being the claustrophobic chest compression (like an anvil on my chest) and inability to breathe properly, or get a proper lungful of air for every second of every day, 24/7, for close to a year. Fuck me I will never forget how that felt. It’s traumatising. 3/12
Read 12 tweets
What is ME/CFS?
In short, in its severe stage, it is the worst non-fatal physical disease you can have.

ME/CFS is a severe, physical and complex disease, usually caused by a viral infection. Because so little research has been done on it, scientists are not sure about the
underlying cause yet.
An incorrect response of the immune system to an infection is likely which then, as in a chain reaction, leads to a dysregulation of the immune system, the nervous system, the endocrine system, the energy metabolic system and the cardiovascular system.
The disturbed immune regulation also leads to a sustained T-cell activation and a reduced function of natural killer cells.

Who is prone to develop ME/CFS is also still unclear. There are probably two factors:
-An infection at the time of high physical activity or stress load
Read 9 tweets
Please check out our piece on @NBCNightlyNews tonight!

Awareness & education are key in propelling the #LongCovid & #chronicillness community forward. #Longhaulers in the millions are being failed in healthcare & social supports.

Options have run out. #LongCovidActionNow
1/5
We want to thank @NBCNightlyNews @CynthiaMcFadden & @KitRamgopal for highlighting the struggle #longhaulers face trying to access benefits.

We hope to see @POTUS address the devastation of #LongCovid in the upcoming #SOTU address & take immediate action to help millions.
2/5
Our founder & president (featured in the story @K_Bishof ) can be reached at admin@Longhauler-Advocacy.org or you may check out & contact us through our website longhauler-advocacy.org or on Facebook facebook.com/groups/c19lap/
3/5
Read 5 tweets
1/5 For anyone who wonders what severe ME looks like, this is how I have spent 90% of every day for the last 10 years. It is a living hell. It is incredibly common, and incredibly severe, but is ignored by society and by medicine. #MECFS #Chronicillness Image
2/4 ME is twice as common as MS and just as severe according to the NICE guidelines issued to GPs. However, doctors receive almost no training whatsoever about ME. The funding is pitiful, merely a fraction of other chronic diseases.
3/5 ME causes more ‘functional severity’, and has a higher score on the DALY chart (disability adjusted for lost years) than any other disease. Immunologist Nancy Klimas once said ‘I have spent my entire career researching AIDS and ME. Given the choice I would rather have AIDS.’
Read 5 tweets
On the top picture, you see me.  
Back then I enjoyed life and did not worry about the future. I had just finished school and couldn't wait to see what life had in store for me. I was a very sociable person and loved having people around me. I lived a very active life and there Image
was hardly any party I missed. Photography and travelling were my great passions. 
 
On the picture below, you see M.E.  
A severe and utterly frightening disease that hardly any research has been done on. This disease is to blame for the fact that I have lost everything about my
old life. Here I am getting another infusion because I am in such a bad general condition again. 
 
So, what happened between the two pictures? 
I developed Myalgic Encephalomyelitis / ”Chronic Fatigue Syndrome” after a mild virus infection. (hard to pronounce, even harder to
Read 8 tweets
1/? My region is bracing for extreme weather. A blizzard - a whole lot of snow & hurricane force winds. We're going into this with diminished resources & it's reminiscent of how I felt when I still didn't know how to pace around my #ChronicIllness.
2/? I'd burn thru my own resources (or someone would do it for me) & then when I needed them to deal w/ something that could easily be a crisis, I didn't have what I needed to get thru it without a total disaster. I feel like my entire state has done this wrt COVID, & now we're
3/? in trouble. My entire state was ok with the costs (b/c it was only the unvaxxed, the old, the sick, people who were "unwell to begin with" who they thought would bear them) of burning thru our resources like they were easily replenished. They weren't. Now, will we have
Read 6 tweets
#Medium #Mediumship, was reading an old #Tufts@TuftsDaily⁩ article from 2008 interviewing ⁦@jessicaalba⁩ about her film #TheEye, watched the trailer:
you do see how see people died, though, if contacted by the deceased, they share their personality, images of what is relevant, what they think is, which can be difficult; I take #antidepressants, and, am #healing myself from illness, some #trauma, too, and, was seeing more,
earlier in my healing, and believe it is crucial to have a filter/level of #health with, a pretty well-known #medium told me he also got very sick with #pnemonia, I had #mycoplasmapnemonae, in #MeCFS #CFS, had #Lyme #LymeDisease, too, and, the information is for #healing,
Read 39 tweets
Covid #LongHaulers please take note.
Those in the #MEcfs community has been down the Post Viral Sydrome road for decades now.
The CDC is fully aware of our plight, but has done little in the way of research or help.
#ThisNeedsToChange
Thread...
2-It begins, usually, with an infection.
For the majority of #MyalgicEncephalomyelitis pts it was the Epstein Barr Virus. But there are other infections that lead to #MEcfs as well. In almost every case the person knows that from that point, they were never the same again.
3-For some the progression is slow, fits & starts of decline.
Many continue with some sense of 'normalcy' in life for years. For others the onset of their post viral syndrome happens immediately and functional decline deterioration of all body systems is rapid.
#LongCovid #MEcfs
Read 10 tweets
Dr Rochelle Walensky @CDCDirector said on @GMA "the overwhelming number of death [sic] over 75% occurred in people who had at least 4 comorbidities, so really these are people who were unwell to begin with, and yes really encouraging news..."
I have 4+ comorbidities that I live with daily. Does the @CDC think that #ChronicIllness means practically worthless? I hear an echo of Scrooge in Dickens' A Christmas Carol, "If they would rather die, they had better do it, and decrease the surplus population..."
Dr Walensky, I know I'm no longer as vital a contributor to the #GNP than I once was, that I am more liability than asset in your ledger, but I still contribute to the emotional and spiritual richness of our society by my actions and even by my needs being met by those around me
Read 6 tweets

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