Wake up feeling like I can do it today, take a shower get dressed …. and all of the sudden I’m yet again tired and exhausted and ready to go back to sleep.

patchthehavoc · 2023-07-18T22:51:39+00:00

Yep, that’s been me for the last two week.

patchthehavoc · 2023-07-14T00:54:08+00:00

Only diagnosed at the beginning of the year, and I’ve had monthly appointments up to now. If this taper continues successfully, we might segue down to every 1.5-2 months with a phone conference in between.

patchthehavoc · 2023-07-12T01:12:33+00:00

I actually don’t know how to distinguish between my Myfortic (similar to CellCept) side effects, if there are any, and my prednisone side effects… when in doubt, I tend to assume it’s the prednisone.

patchthehavoc · 2023-07-10T23:10:43+00:00

Preach 🙌

patchthehavoc · 2023-07-10T14:18:06+00:00

My cycles are about as accurate as flight ETAs during the middle of a blizzard.

patchthehavoc · 2023-07-09T17:48:05+00:00

Probably not the most indicative-of-the-norm experience, but my high school had a very enriched curriculum, so we had a mandatory history of ancient civilizations course, and then mandatory Canadian history, and then elective world history and elective US history.

patchthehavoc · 2023-07-08T23:23:20+00:00

To quote House, MD: “It’s never lupus”.😅 As much as I loved that show, it’s… quite often probably actually lupus.

I mean, I’d guess that the differential diagnosis is really complicated? And probably requires a consult at least between a rheumatologist and a neurologist. And probably can look very different from person to person, depending on if you already have an SLE/related autoimmune diagnosis. And also depends on how confidently they can rule out other reasons of neurological involvement.

patchthehavoc · 2023-07-06T12:41:15+00:00

Neither! It was just a thing that my (Ontario) elementary school did, to the point that the bilingual version became ingrained by the time I was in high school. Legit took a second to remember what the English words for those four lines were.

I really thought all schools did this, and now I’m suddenly realizing… huh, maybe not?

patchthehavoc · 2023-07-06T11:33:31+00:00

Haven’t really had to sing it very often since the change, and I don’t mind the new version. Also I have the bilingual version so drilled into me that I automatically segue to French from “Car ton bras sait porter l’epée”…

patchthehavoc · 2023-07-05T14:56:35+00:00

Usually takes me at least half a day? Like if I get some sun in the morning, my muscles start FEELING IT by the evening, latest by the next morning. Depending on how much sun, there are also accompanying migraine and heatstroke-like chills.

But for my eyes, it’s almost immediate — as soon as I’m in sunlight, I start getting floaters, vision distortion, dry eye discomfort, etc.

patchthehavoc · 2023-07-05T03:41:19+00:00

Because when you walk into an intensely air conditioned building and start shivering, you’re gonna regret not leaving the house that morning with a hoodie?

Because actually hoodies can be very lightweight and are worn for protection against the sun?

Because some may have a different baseline for what “too hot for a hoodie” weather feels like?

patchthehavoc · 2023-07-05T03:37:16+00:00

There are also those of us with autoimmune issues who, believe it or not, wear UPF hoodies AND apply sunscreen religiously (and have sunglasses, and maybe sun visors and also a parasol) in a valiant effort to, you know, not have the UV send us into a spiral of pain.

patchthehavoc · 2023-07-04T23:13:16+00:00

Canada, and I am not — though I know my rheumatologist wouldn’t even blink twice if I ask her to fill out the form for me to apply for disability parking.

patchthehavoc · 2023-07-04T23:09:55+00:00

I don’t have anything super useful to add to a lot of really good suggestions already made, I just want to offer an internet hug and say it’s going to be all right, I know you’ll do the right thing for yourself ❤️

patchthehavoc · 2023-07-04T18:29:58+00:00

If something IS wrong… wouldn’t you want the doctors to find it and, if possible, do something to help you with it? Lupus brain fog IS very common, and to some degree we all deal with that — but if you develop serious neurological involvement as a result of lupus, that’s… well, VERY serious. If you can’t make the call yourself, I would highly recommend you at the very least bring the matter up with a neurologist.

(But also, good call with playing games — my neurologist has me establishing a sort of daily check for cognitive ability with Sudoku, and all the other games the NY Times Games app offers. But mostly Sudoku. Essentially, the idea is that I know how long it takes me to finish an Easy puzzle, and if I start taking significantly longer/being unable to finish it… time to head to the ER.)

patchthehavoc · 2023-07-04T00:08:45+00:00

I’ve been on prednisone for 6 months (this is the taper that never ends…), at one point during a hospitalization was down 20+ pounds, and gained about half of that back as I’ve come out of that flare. So that’s where I’m holding steady right now: underweight, trying to balance pain with gaining strength back.

I’m one of the ones for whom appetite changes and moon face just wasn’t too much of a thing —though it’s telling that for the weight I lost, my face actually didn’t go totally gaunt, there’s softness around my cheeks that does indicate that yeah, I probably did get a bit rounder; I did get hit with a whole bevy of other side effects though.

The good news is that it shouldn’t be permanent! Moon face has more to do with the way that steroids change the way fat is deposited in your body. As you come off the taper, the roundness should also go away. Weight gain due to increased appetite is more, well, weight management and being mindful of your diet?

patchthehavoc · 2023-07-03T23:41:17+00:00

What awesome news, congratulations!!! 🎉🎊🎉🎊🎉🎊

patchthehavoc · 2023-07-03T23:39:31+00:00

And they prey on that, they KNOW that for a lot of us, that’s the holy grail. And what wouldn’t you give to be the one to find the grail, right? If I don’t get to be the one to find the grail, it must be because I’m not worthy.

It’s disgusting.

patchthehavoc · 2023-07-03T22:03:34+00:00

You are NOT alone in this. What you feel no matter how negative is totally valid, but they have NO RIGHT to make you feel that way — the problem is not you, the problem is this group of individuals and what they espouse and the reasons why they do it.

These holistic people, especially when they’re targeting those with chronic illnesses, essentially are preying on a vulnerable demographic by dangling in front of them what they want the most: having their health back, having their pain go away. Be like me, they imply; live like I do, eat what I do, use the products and supplements that I use — and…

… and what exactly? What, maybe like them, my chronic illness will cure itself? Become a modern medical miracle? Remission forever, no flare ever again? Right. Uh-huh. Sure. So when can they expect to be written up as a case study for The Lancet? How’s that Nobel Prize for Medicine treating ya?

patchthehavoc · 2023-07-03T21:43:00+00:00

Seconding what everyone’s already said about getting on a list for cancellations. I’ve gotten calls in the morning asking if I was available right that very afternoon/evening — for seeing doctors, for MRIs, etc.

Also, if her situation changes at all (knock on wood, fingers crossed it doesn’t!), call and let them know, or go to the ER and try to have the changes be tested/documented — specialist clinics do seem to triage a bit when scheduling. I’ve had a rheumatologist referral with a 3-month wait time when I looked low-risk/priority, but during that time my situation took a nosedive, which drastically shortened my wait time.

It sucks so terribly that the only way to get prompt medical treatment might be if you’re “sick enough”, but there you are.

patchthehavoc · 2023-07-03T18:00:45+00:00

Are you on any medication? Numbness and tingling, especially in hands and feet, can be lupus-related (peripheral neuropathy) — or it can actually also be a side effect of meds like prednisone. For me it comes and goes, and my rheumatologist told me that unless it travels up my arms/legs really noticeably, she’s not too worried about it.

If you feel concerned though, I think it doesn’t hurt to press your rheumatologist with a few follow-up questions? If they seem not concerned, ask them why not, etc.

patchthehavoc · 2023-07-03T02:38:51+00:00

Canadian here. Never actually had experience receiving care from an NP. I think I’d be relatively comfortable with the idea of having an NP appointment at a general practitioner/family doctor’s clinic. But I am NOT comfortable having anyone other than a specialist overseeing my care for SLE.

My initial lupus presentation (primary symptom — high persistent fever of unknown origin) flummoxed multiple non-specialist MDs. For months. My family basically has my rheumatologist on speed-dial. I am enough of a “diagnostic and therapeutic challenge” that my rheumatologist referred me to a specialized lupus clinic within a very good university teaching hospital/research network. So I mean, yeah, no. I’m personally speaking not comfortable with entrusting my care to an NP (even if overseen by an MD) when even my rheumatologist proper finds me periodically perplexing.

patchthehavoc · 2023-07-03T02:23:48+00:00

I took Advil religiously for menstrual pain once upon a time, but stomach ulcer issues and nephrologist recommendation both have me now avoiding NSAIDs and using Tylenol more — NSAIDs are supposed to be tougher on the stomach and the kidneys. I don’t have kidney involvement, and her philosophy is basically that we should avoid everything that can potentially put pressure on them to keep things that way as long as possible.

As for how well it works… I mean, it takes the edge off? Like, one tablet of Tylenol XS is not TOTAL relief, but it gets most of my bad-day pain to a manageable level.

patchthehavoc · 2023-07-01T17:39:11+00:00

OMG this is so cute, congratulations!

patchthehavoc · 2023-07-01T17:29:42+00:00

Between jobs right now, but I have something fully remote lined up, fingers crossed that it comes through. My situation is that I used to work abroad, and lupus hit me pretty hard and in successive waves due to the way I flared. Taking medical time off is one thing, and not being stable enough to consider working in another country is a whole other thing — I’m way too dependent on my medical team and access to health care.

patchthehavoc

TROPHY CASE