Hi long covid crew, I’d like to see a Dr to run tests for reactivated viruses and determine if my swollen and worsening lymph nodes are anything other than MECFS. Any recommendations for a good Dr MA, NH, ME?

Now that I have POTS can I deduct pickles from my HSA? It seems only fair…

Got the flu shot at Walgreens. Pharmacist noted ‘better late than never.’ He said antibiotics and cough med orders were through the roof. I was the only person masked 🙃

I have an increase in headaches & nausea, and new sudden vomiting with POTS from longcovid. It’s not improving after stopping Mestinon. Anyone have recommendations for things I can ask my neuro’s NP next week?

I’ve been on Mestinon for long covid for 3 months and have had such a slow increase in GI problems I didn’t realize it was related until now! If you have strange new symptoms check your meds!

My cashier at TJs said her husband had cancer and they had to cancel plans because all of their immediate family was sick. She asked if the same thing happened to me. I said no, I mask as a precaution to avoid viruses. She thanked me for doing so. Sometimes it’s that easy 💛

Ivabradine has helped my POTS.

Second #longcovid study visit. When I stand blood flow to my brain decreases by ~40%. It’s so validating to have data to explain why I feel awful and combat the gaslighting of everyone pretending covid risks aren’t real.

3 years later and I have a POTS diagnosis! I know this will make for a challenging second half of life, but today I’m celebrating having a name for it. #LongCovid

I think Mestinon is helping my long covid PEM! I took on a huge home project yesterday and was ready to wake up to flu like symptoms. No sore throat, no fever/chills. Really sore muscles and a mild headache. Hopefully this holds true for tomorrow too 🤞🏻

I’ve been frugal after having to take a year off work because of long covid. But this year I decided to invest in seeing some specialists. I’m nervous about what my upcoming bills will be but I hit my deductible today so hopefully that will help.

Woah I got a call today that I could do autonomic testing in a week! I thought I’d be lucky to get in this year. I’m interested to see how I fare in the tilt table test. I failed the NASA lean test at minute 9.

On the verge of happy tears. Finally saw an autonomic neurologist that was not phased by long covid and is ordering blood work, autonomic testing, and having me try Mestonin. Check out local Dysautonomia groups for people in your area. I waited a year for this appt and damn was it worth the wait.

Rationing heart medication because a specialist wants me to get it from my primary care form now on, with zero notice 😡

The stars aligned today and I cleaned out my shed, despite my long covid. Yesterday I increased my LDN, resulting in an energy boost. It was not super hot. Ivabradine kept my HR in check. And I have off work tomorrow to rest. It felt so good to be active. But these stars align infrequently.

First bit of good news at a Dr appt! I became prediabetic after covid, and following three years of hard work + meds my numbers are normal again. 🙌🏻 Now to sort out my other long covid symptoms. Has anyone had luck addressing swollen and painful lymph nodes under the jaw?

This week marks 3 long, miserable years of long covid. It’s been awful. And I’m also really proud of what I’ve been able to endure and the lessons I’ve learned along the way. And of course the drop in barometric pressure is kicking my ass this week just for fun.

So far I’m loving Ivabradine. No side effects apart from needing some extra sleep! Body battery increasing! Taking it for pots-like symptoms. Yellow arrow is when i started. #longcovid

Trying Ivabradine for my long covid pots-like symptoms. My HR spiked when I checked on my garden on this hot night but I don’t feel terrible after. I’m so very cautiously hopeful.

What an impossible task, to communicate the last three years of struggle in a short appointment. #longcovid

My friend said “how are you?” I said it’s raining. She said that doesn’t sound bad as long as it’s short-lived. I realized I was actually in a lot of pain but it’s hard to talk about that so I substituted in the rain. 🙃 Figuring out how to live with pain and chronic illness is tough.

I failed the NASA lean test in minute 9. My first set of real data for long covid and POTS. I’m feeling two things - I know it’s a serious issue and that’s scary but I’m also happy to have my health challenges affirmed.

I am a part of a Long Covid study on Thursday. I am holding my breath hoping it won’t be cancelled with these budget cuts. WTF.

It is so fitting that I’m randomly in a major MCAS flare for Long Covid Awareness Day. On the upside I sat in the sun today and that was great.

I just got the flu vaccine. It is surreal how I can feel my body reacting to it. And uncanny how similar that reaction feels to a bad day with long covid. There’s a heaviness in my chest, I’m not breathing deeply, my muscles and joints hurt.

I’m realizing I might need to adjust my language about my Long Covid. I leave my house once a week and experience the severe symptom of internal tremors. I know it can be so much worse, but I think especially to Drs. I’m telling a more optimistic story.

I am retraining my brain to eat in ways that improves my blood sugar. It is so hard but I’m making tiny steps forward.

I know people worry about heat pumps not keeping up. I’m running one with a -6 windchill and it’s heating a large space to 65 F (but can’t go beyond that). When it gets a lot lower I light a fire to supplement, but for me a heat pump is perfect, as we don’t get many days below -10.

One week on a very low dose of naltrexone (0.25mg) and my resting heart rate is lower, my HR variability is higher, and I feel more like myself. Some symptoms remain, but it’s been a promising first week of this new long covid experiment!

I felt great today. I only wish I knew why so I could try and make it routine. But it’s nice to know my body can feel good despite long covid, even if it’s fleeting.

The podcast “What if we get it right” is SO good! It is hopeful and acknowledges reality of the challenges people face today. I listened for the climate chat and stayed for the wisdom. Highly recommend!

Book rec for those of us avoiding stress - I just listened to the two-book Monk and Robot series by Becky Chambers are they are delightful, gentle, hopeful, and interesting. A perfect read for disabled folks like me trying to rest and calm our nervous systems.

We all have two possible futures: we die young or we live long enough to become disabled. A more accessible world benefits everyone, whether the issue is n95s in healthcare to reduce hospital-acquired illness or easier mobility in public spaces. Disability justice is community care and self care.

Ooof bad long covid day. Ear pain and lymph nodes hurt so bad. I am guessing the swings between warm and cold days are a part of it. Ouch.

Voted. I was the lone-masker but thankfully there was no line. I appreciate our town for keeping things efficient.

If you are in the U.S. & are an adult w/ a disability (including LC) or the caretaker of someone w/ a disability, the government wants to hear about barriers to healthcare. This is a great opportunity to talk about masks & clean air, as well as any other concerns gaosurvey.gao.gov/jfe/form/SV_...

Trialing the #nicotinepatch for #longcovid. 1/6th of a 7.5mg patch and felt great. Headache, sinus & ear pain & pressure is better, mentally sharp. Fridays I’m usually foggy after a full work week. Took off after 4 hours as I felt almost over caffeinated, felt better after removing. Hopeful!

Are masks assistive technology? I would think they are - they allow disabled folks (including those with long covid) to more safely access the world during this pandemic. It’s World Day for Assistive Technology and I’m not seeing masks included in the conversation?!

It's tokenistic and nefarious when public health agencies include a sentence saying "we need to protect the vulnerable" when communicating about a policy that does the complete opposite and puts marginalized and vulnerable people at greater risk.

Just watched Spaceman, loved it. But the irony of so many great films coming out about isolation when we isolate vulnerable people further by rolling back covid precautions is so heavy. I also loved Biosphere and Self Reliance.

Is there any guidance out there on adding a very thin fabric to a FloMask or Aura N95? I don’t want to compromise the mask structure. The fabric is so thin it won’t compromise breathability or fit. I am hoping to be a bit more approachable if I need to mingle at a work function.

The great thing about a cold winter day? No one commenting on my KN95 because I hide it with a buff! It just looks like I am staying warm while shoveling. ❄️

I was just called by a national political poll and there were NO questions about the pandemic. I gave feedback on that at the end and the person did say he would flag for his supervisor. But WOW.

Long covid and my ears - ugh! They ache like an ear infection, don’t drain well and the tinnitus is so loud when I’m in a flare. Anyone else? Could be worse but it does disrupt my day, it makes it hard to think clearly.

Yes! WFH has been essential for me as I’ve gained 2 more chronic illnesses in the past year. And it’s allowed me to isolate and reduce my covid exposures.

I went for a 45 min walk today and ran for a minute a few times and my heart rate didn’t go through the roof. I hope that pattern will continue so I can finally add in moderate exercise to my routine, after 14 months with long covid. 🎉

I submitted a public comment today!

I have transverse myelitis. I was lucky to avoid major nerve damage and I’m well aware I might not the next time. So far, infections and vaccines have not led to another demyelination. Knowing COVID causes a 6x increase in Guillain-Barre is another reason to wear a mask and avoid crowds.

It’s a bad chronic illness day here. It’s been a long time since a flare really messed with my nerves. Sending well wishes to everyone else in the same boat.

39 hours post Novavax XBB booster and I feel ok! Rested most of yesterday. Can’t wait to see how my #longcovid is this week. I also have an autoimmune issue so every vax makes me a little nervous, but so far so good!