alafair
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Hey, I just wanted to update everyone. I have long haul covid (there’s posts about it here somewhere in the thread.) I was also not recovering at all until I got vaccinated. It’s taken several months past that point for me to be cleared to work…but it finally happened! I’m not considered completely disabled anymore! I still have a long list of stuff I can’t do (like drive!) but I can work remotely. I have lifelong complications most likely – I now have asthma, neuropathy and dysautonomia – but the brain fog has mostly lifted and I can do more.
I was laid off at the office where I caught it, and lost my insurance. I don’t have to tell anyone here how bad that impacted my finances. BUT- I already found a new job. It gave me great delight to tell the old one no, I was moving on when they called asking when I was returning.
@LisforLeslie – The nueropathy, asthma and other stuff was a covid “gift”. I also have autonomic neuropathy I think it’s called? Ptetty much everything is out of whack. I sweat when I eat now, which is fun. And exercise knocks me out.
The exhaustion is the worst though. My son says I sleep like a cat now. Doc says in addition to everything else I meet the definitions for ME/CFS. I guess an infection can kick that off? I had no idea.
Today I have a lot less
I’ve connected to the long-haul communities. It’s really helpful. The fibro communities are depressing though – they are full of antivaxxers.I’m one of the long haulers @LisforLeslie mentions above. (I haven’t posted in a VERY long time because I’ve been so sick.) mid 40s female in Ca. Got the first moderna shot. It was brutal, which made me happy. Like having another bout of covid again. There’s some evidence that long haulers recover after the shots at a rate of 30-50%. The ones who do recover have a hard reaction. It’s been 12 days and I actually hold a coffee cup today. That’s a huge improvement.
I had moderna. I’ll always have some stuff, like the asthma and neuropathy, but maybe I can think again. And then I’ll be able to work. I’m hopeful for the first time in a very long time.
Re: med recommendations… I’m with @Kate – I now take 12 meds scattered throughout the day. I have two different inhalers, for example. Adding in a med is a delicate act as the potential repercussions can be very bad. I had an adverse reaction when my chart wasnt updated and ended up admitted to the hospital, for example. But I thank you for the thoughts and well wishes 🙂
@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.
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.
@Ange if you don’t mind, can you tell me what RA is like to live with? The doc thinks that’s actually what I have. Just cant get xrays and the rest of the required stuff to confirm yet. I’ve been making myself even more stressed recalling what it was like for older folks I knew 20 years ago. Probably being overly dramatic and feeling sorry for myself.
@Anonmousse – I hope the bloodwork comes back clean. Did you have asthma before? the fatigue is unrelenting isnt it? I cannot believe how tired I am all the time.
I had a very unkind thought re: Herman Cain. The first thing I thought was he died for his beliefs. And then I was ashamed of myself because I don’t want to be that person, no matter how bitter I am currently.
Just an update. I don’t know if anyone else who’s had corona is still having issues…but I am. Been really hard. It took a while to get into the doctors because I was spiking a fever. Can’t allow anyone in if they have a fever. At one point I couldn’t hold a fork – my hands wouldn’t close enough. I couldn’t keep a grasp on a glass. I took a turn and had trouble walking. Every single joint in my body just hurt achingly. It started in my toes and fingers and just went on from there. I finally had a fever free day and my doc got me in and ran a lot of tests. I got a preliminary diagnosis of palidromic rhemutoid, which I had never heard of. The doc called it rhemutoid arthritis-lite. I may have seronegative RA but they can’t tell just yet. I may also have other autoimmune diseases – fibro being a particular concern – but not enough time has passed yet, and they cant run all the tests.
So for me corona has been absolutely lifechanging. The infection kicked off a grab bag full of autoimmune stuff. The meds have been difficult to find because some idiot talking heads have been saying that hydroxychloroquine is a miracle corona cure. Since they couldnt get that the doc went with a stronger med and the side effects have been incredibly unpleasant.
I don’t know how to feel just now. It all just sucks.
I live around LA and I have to agree with BGM. The tension in the air is palpable and rising in some places. The last time I felt anything like this was right before the 92 riots. This feels more pervasive somehow, and worse.
I feel like we’re in a pressure cooker. The BLM protests let out some of the pressure…but not all, not nearly enough because of the lack of accountability, lack of action and the increased stressors. I keep waiting for stuff to explode again.CA has gone back into closures – but my company is still going to require everyone to work in the office. we’re an essential sector, so they can do that. We’re also a very conservative sector so only half the people in the office are wearing masks. of those, probably 1/4 are covering their nose. It’s all very discouraging. I’ve been reading some pre-pub research papers which say people may contract it again, and that terrifies me. I never ever want to feel like that again.
If I didnt have kids I would probably be weighing my options heavily.
@Helen – I’m so glad to hear you are doing better. What I’m mostly worrying about is the lingering pain. the breathing seems to get a little better every day, but my joints have suddenly aged. they hurt and creak constantly. Even typing is painful, which is difficult since I type all day long for work. I started taking collagen in my coffee and I’m hoping that’ll help recovery.
@TheLadyE – All of the non mask wearing people are so damn selfish. I have diagnosed PTSD. Found out the hard way before I got sick that one of my triggers was having my mouth and nose covered and smelling garage smells because of how the attack took place. I still wear a damn mask, but carry some vicks and dab it under my nose if I’ll be in a situation like that. I think taking care of my issue is my problem and doing what’s right is more important than my personal discomfort.There’s a guy on camera near us too who took off his mask to cough. like…wth?
@ktfran – I am so very excited to hear about it. My world has definitely narrowed since the pandemic happened. I’d love head about a restaurant doing it right. We can all live vicariously through you!hello!
@Fyodor – I am truly sorry about your loss. I hope you find what comfort is available in your memories of a wonderful parent.So it’s been a while since I posted…corona kicked my butt in. Was diagnosed and had a moderate case. Well, the doc called it moderate because I only ended up in the emergency room a couple of times trying to breathe and they were able to stabilize then release me. Been about 2 months and I’m finally recovering. Still exhausted, still short of breath, still dealing with body pain. But at least I survived. I’ve worked my way up to 5000 steps a day, which is a huge leap forward. @Helen – how are you doing? I recall you caught it too and it was pretty bad.
My son’s district here released their plans. We have the option of online only – in which case they will be removed from their current school and transferred to a newly created one – or a combined approach. two tracks, each in the school 2x a week and distance learning the rest. although I’m worried about the effects on my child I am leaning towards online only. I want him to socialize yes, but I want him to live as well. Here in the LA area cases are surging and I just dont feel like we’ll be in a safe place in the fall.
We’re in the office full time all the time now. I work in a very conservative but essential business and so not subject to the restrictions on office work. About half the employees are wearing masks. I keep hearing “but you’re immune now, you should be out there living it up” Really makes me question some folk’s reality. Instead I keep my office door closed and try to stay away from everyone. I suspect I’m losing goodwill by not being as social with everyone else.
Everything’s really tiring but I’m struggling through it.
