Another question…with the cities starting to open up what does that mean for people like us. Do we come out of hibernation? How do we handle visiting families? Children coming home from college for the summer? Do we isolate from our children when they start going out? Some will have summer jobs and return home?
We are nowhere near opening up in the northeast, and the college students have mostly been home for a while already. For those who have concerns, they have quarantined their kids in the house, separate, for two weeks. This means that they’re home, but kept separate until the typical incubation period.
On a personal note, my high school senior is actually the only one of us who’s going out to work now. She works in a grocery store, and is considered essential. She also knows that if any of us is diagnosed, she’s out for at least 2 weeks of work.
Sorry. I wish I had better answers for you. There’s no perfect solution.
I tick a whole lot of boxes other than auto-immune; thus, I’m still hibernating and will be for a while. I’ve been working at home since March 16; my husband since about March 25. I’ve been out exactly twice: once to get my brain swabbed (I was negative) and the other to have my Fasenra injection. Tomorrow, I–and my mask–go out for my first physical therapy since March. Friday, I–and my mask–go out for my first face-to-face therapy session since March.
We have not yet been told to return to the office. In fact, Governor Beshear has made clear that if you can work at home, you should. I expect that to continue at least through June/July. Even after that, I think Gov. Beshear will open up shop the same way he closed: 25% in office, 50% in office, 75% in office.
I expect to be one of the last to return to work. Even then, I will be asking for accommodation to work at home three days a week and in the office for two. I’ve earned a ton of comp time and filed a ton of pleadings since March 16. That proves I can work at home (actually better than I do in an office that is 85* on a good day). I plan to talk to my pulmonary at my June follow-up and my rheumy during my August follow-up. If I’m not allowed, I will retire in December rather than July or December of next year.
The news tonight mentioned that the first vaccine may be live. I know my rheumy won’t allow me to get that one, so I figure I’ll be going out with mask for quite a while.
I think we need to be more careful than others. Most of us are on DMARDS and/or biologics that weaken our immune system. I always have low WBCs, which is called leukopenia. I’ve been lucky in not catching a lot of “catchy” things, but being careful around sick people and lots of hand washing has always been my thing. Now, wearing a mask and social distancing has been added.
I don’t think we should be pushed back into the workplace, at least not under “normal” conditions. If you do have to go back to work, you should request special accommodations—maybe a doctors note would help.
My doctor wrote me a note. I haven’t had to go to my office since I got back from vacation the end of March. I love working from home and I’m pretty sure it’ll be that way for a long time.
I feel I have taken a few chances being around our kids and grandkids lately. Not too close, but for a few minutes here and there closer than 6 feet. I know I shouldn’t do that, but with 12 grandkids it’s not easy. They’ve been sheltering in place, so hopefully they or I aren’t spreading any germs. But after the times I did it, I was scared I put myself at risk. So, I’m going to be more careful.
I hope y’all are doing well!
I’ve never quite agreed with the notion our meds ‘weaken’ our immune systems. They would ‘weaken’ a normal person’s ‘normal’ immune system, but we don’t have ‘normal’ immune systems to start with.
Our immune systems are insane - that’s why we have PsA. So our meds ‘normalise’ our immune systems which is why they help arrest our PsA disease progression. If we didn’t take them, our immune systems continue to be insane causing not just PsA mayhem but lots of other mayhem too.
My experience of being medicated for PsA means that finally it seems my immune system works more normally so I catch less colds etc etc. Indeed I don’t seem to catch any. So my PsA meds certainly haven’t ‘weakened’ my immune system. Instead they appear to have strengthened it, quite considerably too.
The problem with Covid 19 is that it simply doesn’t matter what state your immune system might be in as your immune system has never encountered this virus before so it simply has no defence to it.
What they don’t really know yet, although certain research seems positive, is how someone reacts to Covid 19 on our type of meds, which tinker so considerably with our immune systems.
Sadly most of us have other associated or just other underlying conditions anyway which of course complicate matters even more. It’s all that that’s the scary bit. Not the fact we’re on PsA meds to ‘normalise’ our immune systems.
I have started to slowly returned to venture out to do some small tasks for myself with my mask and hand sanitizer accompanied in hand. I go at off times so the stores are basically empty. I also only go to one place a week so I can track my outings in case I get sick. I have never been a large group person so church and other gatherings will definitely not be on my list soon. My daughter ( a high schooler) bless her heart does not understand why we cannot do a girls trip this year but I just tell her we will again one day. I told her I just cannot afford to be away from my doctors right now.
For me my little adventures have been good for me mentally, I just take the precautions the doctors tell me too.
I do agree to a degree, but I don’t think my white blood cells would always be below normal if if wasn’t for Enbrel, so I do wonder if my immune system is below normal because of that. But, I also know my body is able to make WBCs when it needs to because when I had strep throat my number more than doubled and it was in the normal range.
Obviously I don’t appear yet to have those issues so I’m sure my thoughts are consequently too biased. In 4 years on 5 different meds I’ve yet to have a questionable blood test result. Maybe I’m exceptionally just lucky. I’ve also yet to pick up any major infection or anything else. Everything I’ve experienced healthwise is usually brief med induced side effects only - disappearing when we dump that med and get on another. I do have zero tolerance for med induced side effects though and I realise other people are more tolerant.
I simply think ‘weaken’ is too inflammatory and negative a word for what biologics or DMARDs do in ‘tinkering’ with our immune systems. It makes people perceive them as ‘bad’ whereas most of the experience of people on our meds that work for them is incredibly ‘positive’ and even ‘life changing’ for the better. You and me most especially. The persistent use of the word ‘weaken’ by some of our medics sadly and indeed most of the media puts entirely the wrong ‘spin’ on it.
That means then both here and elsewhere we spend time (a lot of time) explaining to people why actually being med compliant is the only way to go, prior to Covid 19 and more especially since Covid 19.
Well said Poo!
That is for sure! I won’t stop Enbrel just because my WBCs are slightly low! I wouldn’t stop it unless I was absolutely sure it wasn’t working—and I’d probably tolerate several months of PsA symptoms before I’d throw in the towel and switch biologics! Enbrel is my friend—my very loyal and devoted friend…
I’m with you, though, @Poo_therapy, I do not do well with med SEs…nausea and bad headaches especially! I do get SEs such as dry mouth and excessive sweating from some of my BP and cholesterol pills, but I can put up with that if it means my heart and arteries are protected.
You are thinking the same way I am. It will be early July at least before we go back. I am thinking about setting my retirement date for the day we are forced to return to work if they will not let me keep working from home!
In Italy lockdown thaw involves stores gradually opening, and country wide circulation from june 3, if confirmed. Am working from home, as two thirds of public and large companies in Rome, and my fragile status might allow me to maintain this situation until the fall. Isolation has resulted in diminished contagion rates, but of course keep on being terrified. Will work on updating and further empowering all computer equipment to optimize possibilities, the country at large is doing the same, in the public and possibly private sector. Definitely feel more protected this way, of course worried about going for check ups but with due caution am planning to schedule overdue labs etc for general pic. Have even gone for a covid blood test, which unfortunately turned out negative, so cannot hope in acquired immunity. Hoping the planet will not turn into a giant hikikomori syndrome, and striving to be as contemplative as poss while at the same time trying not to lose my grip. All the best to all of us,
I will have to google that one. I imagine it’s not a good thing
The UK … well, the UK … um …
Stay safe Letizia.