November 16, 2020 at 2:45 pm #964414alafairParticipant
Hey all. I just wanted to give a corona update. been having some health problems since spring, when I got corona. So here’s the latest:
Now have severe asthma and COPD, periphial neuropathy. These are probably permanent. Had more CT and MRI scans, blood tests than I can count. The founded scars or nodules or masses in my liver, kidneys, lungs. have colitis. All covid gifts. The pulmonologist said he’d never seen test numbers like mine in a case where both lungs were still intact. They finally ruled out lymphomia though.
Still have brain fog and inflammation, pretty damn much every where. Docs are pretty hopeful that these will get better, but can take up to 2 years. the inflammation in my nerves probably caused the neuropathy. I’m actually pretty lucky; another one of my neuro specialists’ patients has inflammation in the spinal cord. I still nap at least 3 times a day, at least an hour at a time. But my heart rate is evening out finally, so that’s good. I just can’t do more than 5000 steps or it shoots up around 165. I also have to be very careful to manage stress – too much and it shoots up. But now there’s a definite cause and effect. Before it was random.
Not sure if anyone else here got long haul covid so I just wanted to share, even if I havent been here in a number of months. I think more people need to know how bad it can be to live with. It’s almost like death is the only thing people worry about…and it should not be. I’ve been writing about it on medium, reddit, fb…everywhere I can when I have energy.November 16, 2020 at 3:18 pm #964415Cleopatra_30Participant
@Helen it is nuts. I had a small civil discussion on FB with a family friend and he basically stated, I have been too trusting of the media and government. So where is he getting his sources then?! Certainly isn’t academic or scientific since no one believes them either. Very narrow minded group of people out there who only trust their neighbors….ugh
@alafair, wow thank you for sharing. I had heard of the lasting impacts that have been recorded to date with COVID. I really hope over time these go away or improve. I can only imagine the frustration, mentally and physically, this has been for you.
I have an buddy from back in Calgary who got COVID and has volunteered to help with continuing studies by taking part in body examinations to see what lasting impacts it will have on him and others.November 16, 2020 at 5:37 pm #964418November 17, 2020 at 9:55 am #964435hfantodsParticipant
I’m so sorry alafair. Thank you for sharing.November 17, 2020 at 10:43 am #964437LisforLeslieGuest
@alafair – I’m so sorry that this is happening to you. Your experience is why I am aghast that people don’t “believe” in COVID. We just don’t have enough information about the long term effects. But scientists will be turning their attention to long term impacts and some already have started to do so.
Please consider participating in longer term trials for COVID impacts as you might have access to more resources and treatments.
Talk to your doctors and have them find out if there are any studies in your region and check out the page below:
https://clinicaltrials.gov/ct2/who_tableNovember 17, 2020 at 12:01 pm #964441HelenGuest
So sorry you’re going through this alafair. Thank you for sharing your storyNovember 17, 2020 at 12:23 pm #964442BethanyGuest
Oh alafair, I’m sorry you are dealing with long haul covid, and thank you for sharing with us and others.November 17, 2020 at 1:40 pm #964445BittergaymarkGuest
Yeah, I really became upset and angry at the universe reading Alafair’s update… Hang in there, we are all pulling for you.
As for me —- I have returned to the high desert for a few days in between airbnb bookings. The place is a rousing success. Lots of 5 star reviews… I last drove out here exactly one month ago for my not so great birthday. But my —- is it ever good to be back. And to NOT be so completely consumed by the sheer depression of turning 50. Word of warning: hitting that milestone really truly sucks. Although perhaps in 2020 that was only heightened to extremes. That and election fears.
November is a fun time to be out here. Cool crisp nights. There were a million stars out long after midnight as I walked alone along the “abandoned” gravel road… Coyotes howling all around me, but in the distance.
I awoke late thus morning to a clear, warm, sunny day. Coffee is presently brewing as I type this. Damn good cup of coffee, hopefully. Yes… TWIN PEAKS is very much on my mind lately as I am acting opposite Sherilyn Fenn (Audrey Horne!) in a podcast. Just listened to a rough cut of our big scene together. A scene I wrote no less… (Recorded separately, but now edited seamlessly together.) But more on all that later.
Back to the here and now. Back to the desert. Whew… It is so nice to be here all by myself —- far away from the madness that us presently LA. (Although I powered through my depression in the past few weeks enough to give my oh-so-tiny apartment a much needed DEEP purge. So it is nice and tidy yet again at long last.)
Speaking of neat and tidy… The “planted desert” here at Park Place Oasis looks pretty fucking great. Surprisingly so. 90 percent of my over-planting miraculously survived both the scalding summer heat and my rather unexpected months long absence… Now —- after a weeks and weeks of cooler weather —- even the plants that looked stressed are plump and happy. The purple prickly pear especially of which I planted a billion of as they are local and thus hardy as hell. Today I will water and putter a bit in the yard.
A hike at sunset.
And then —- who knows?November 17, 2020 at 2:48 pm #964454bloodymediocrityParticipant
Who are you and what have you done with BitterGayMark?
Just kidding. It’s nice to hear the positivity.
A slice of that desert sounds great as we drudge through the endless cold gray that is a Minnesota November. I was able to visit Phoenix last December in the Before-Times and it made all the difference in the world.November 17, 2020 at 5:57 pm #964475AngeGuest
Sherilyn Fenn! I always thought she was just so stunning, she had such a classic look. I must admit I never watched Twin Peaks though so I couldn’t comment on that, sounds like a fun project to do.
The differences in countries always tickles me, in Aus prickly pear is an invasive pest and there are massive government efforts to eradicate it haha.November 18, 2020 at 5:40 pm #964553alafairParticipant
@LisforLeslie – I’m involved in a trial. That’s actually been helpful to me too; I was given a CFS/ME diagnosis for example. It takes most people years to get that diagnosed. (For people that don’t know – long haul covid is considered a form of post viral syndrome. Post Viral can cause Chronic Fatigue Syndrome.)
And thank you everyone for the support. I appreciate it. 🙂
The desert sounds magical BGM.November 18, 2020 at 11:48 pm #964554saneincaGuest
Sorry to hear about the after effects of covid.
Have you been prescribed dexamethasone or would you like to request it ?
There are studies that seems to indicate the steroid provides some relief from inflammation.