Remember last week when I said I wasn’t sure if I’ve been dealing with a long-lasting depression or something else? And I was waiting to go to the doctor because every time I go it ends with “You’re probably already dead. Or you just need a nap. Hard to tell. Let’s do more tests. Give us all your blood.” But I decided to go ahead and get some blood-work at my rheumatologist’s office and then they called me to say that my results were weird and that I had “maybe lupus”. It was a shitty phone call and I’ve been trying not to think about it because first off all, there’s no cure for lupus so I’m not even sure why it’s helpful to know that I might have it and secondly, “maybe lupus” is pretty close to “maybe not lupus” and I’ve had “maybe not lupus” most of my life and things have worked out so far. The one good thing that came out of this is that my test results definitely showed that something was wrong with me and there is a terribly wonderful thing to have an affirmation that it’s not all in your head. Except that it is all in my head because that’s where I feel the worst. Catch-22. Or maybe not. Part of this is that my head isn’t working correctly even with my ADD drugs so maybe it’s Catch-21? I’m not good at math.
But what I do know is that “maybe lupus” is pretty similar to “maybe immortality” because neither are confirmed so instead of focusing on the first I’m going to focus on the latter because I’ve been alive all of my life and statistically that’s the way that immortality begins. Plus, I sleep all day and I can’t sleep at night and I’m anemic so I’m adding “maybe vampiric” to my list. Also, “maybe Spiderman” because apparently my antinuclear antibodies are all fucked up and anything with”nuclear” in it seems like something that would cause me to become super-human. Victor says “nuclear” and “radioactive spider” are not the same thing, but Spiderman isn’t a documentary, Victor. Real science is different than comic books. I suspect he’s just jealous that I’m about to get my mutant abilities soon, which is not as good as getting an admission to Hogwarts, but a million times better than “maybe lupus.” Unless my super-human ability is “Super-Lupus”. I’m not sure what “Super-Lupus” would look like but (aside from being great fun to say) it doesn’t sound good. I’m crossing my fingers for the vampire thing. Or maybe I’m like that guy on X-Men whose super power was that he could grow back his arms if they were cut off. He probably didn’t even know he had a super power until someone chopped one of his arms off and then he was like, “Holy shit. What a terrible super-power.” I’m not going to test it though because it’s bad enough to have “maybe lupus” without adding “also her arms didn’t grow back after she chopped them off to test if she was a mutant.”
So, long story short, there’s something wrong with me but we knew that already. My rheumatologist wants me to see all my other doctors to test my hormones and other bullshit so they can tell me I have “maybe testicular cancer” or “maybe your thyroid hates you” or “maybe you’re just broken” but I’m too tired to do that now. Probably because of this “maybe lupus”. So instead I’m going to rest for a bit, which is exactly what I should do if I’m coming down with “maybe vampirism”.
PS. Tell me I just need to get out more and stop eating gluten and I will kick you in the vagina. And if you don’t have one I will make one. From all the kicking.
PPS. Even if I do have lupus (which seems practically impossible to diagnose) it may be medically-induced lupus because the meds I’m on can make your blood a bit toxic and bring on lupus, which seems ironic because I’m taking anti-tumor injections to make my body stop attacking myself and that drug might be causing lupus, which causes your body to attack itself. So if I’m still sick in a month I’ll switch to a different medication which might cause my “maybe lupus” to go away but also might cause my “definitely rheumatoid arthritis” to return. My point? If you are healthy today go and enjoy the shit out of this day because it’s a godamn gift. If you can’t think of anything to do to celebrate being normal then find someone who isn’t and bring them lunch or ask if there’s anything you can do to help because you have no idea how often the people around you go hungry because they’re too tired to leave their desk. If you’re not healthy then I tip my hat to you and remind you that it’s going to be okay, and that you aren’t alone. Life isn’t always easy, but it’s always worth it. Even for vampires.
PPPS. This post needs a happier ending. Inserting medicinal raccoon gif. “LET ME KISS YOU, KITTY.”
PPPPS. I’m going to be fine. I’m having more good days than bad lately and I have a great support system and I actually have good, exciting news that I’ll be sharing with you as soon as my head is working enough for me to write about it properly. I’m just venting. Thank you for listening to me. It does wonders to know I’m not alone.
Lupus means you are a werewolf and not a vampire. The vampires are the doctors who keep demanding your blood, right?! I’m also totally not a doctor. In case you were wondering. <3
Seriously, I hope all is well and you find a balance point for a while, and soon!
You are totally NOT alone. Plus, your kitties love you, too, and that adorable dog, too. Maybe you should get yourself a racoon who pets your kitties? I know I want one.
I heart you and your “maybe lupus.”
“PS. Tell me I just need to get out more and stop eating gluten and I will kick you in the vagina. And if you don’t have one I will make one. From all the kicking.”
This, right here. I am fine with the glutens and if I get one more self important nincompoop tell me I’ll lose weight/get over my depression/become an angel/grow another 2″ taller/fly if I stop eating the glutens I will start spitting fire.
If it’s any consolation, on House it’s NEVER Lupus. Except that one time. But all the other times it was NEVER Lupus! Also though, Lupus means wolf in Latin, so you could legit go around telling people you’ve been maimed by a wolf. That’s pretty cool.
Raccoon looks like it’s going “Feels like cat.. Smells like cat.. does it TASTE like cat? I MUST LICK YOU!”
When people ask me about my anxiety and how it sometimes makes me go into “fight mode,” I tell them I’m basically the Hulk.
I think you can cross testicular cancer off the list… but you knew that already! Love the medicinal gif – you can never have too many cats or raccoons.
It’s never Lupus
If you turn into full vampire and move away from “maybe vampire”; come get me and turn me first!! I’M READY FOR THE UNDEAD WORLD!
Thyroid disease is a bitch. I hope the docs figure out how to make you feel better.
Have you tried Brazil nuts? They are Selenium-rich and help bring down those stupid antibodies. I have Hashimoto’s disease myself…so I understand.
At least according to House. I am sending you good thoughts and a monkey pants song. http://www.rubbershoesinhell.com/monkey-pants/
From one “maybe lupus” to another, hugs
Been dealing with vertigo recently. And actually it is all in my head, and won’t go away. Hard for others to understand. I get you. I look forward to your posts. Thank you for being so honest. You are not alone, and it is awesome when you let all of your readers know that we are not alone either.
I just went through two months of hell, in some of the worst pain I’ve ever been in, and no one could figure out what it was. I was tested for everything. Saw so many different doctors and specialists and finally said fuck it and took myself off of the 20+ new drugs they had prescribed (which I’m not recommending–just sharing that I know what it feels like to know something is wrong but not know what) and I was back to my regular self in days. There was definitely something wrong–they found patches of pleurisy and diverticulae but so small to do much. My feet also swelled up to the point they were 16 fucking pounds heavier (not exaggerating). It was a nightmare. Hang in there!
Jenny Lawson, you have no freakin’ idea how happy I am to have found you. Seriously. You are SO not alone. <3
The first PS is awesome and a very reasonable response.
On the plus side, if they reboot “House,” you are so an episode, if not a season-long arc.
Yarg. No one likes to be told they have maybe-Lupus. Hopefully you will be like my friend who was told she has some auto-immune thingy (also undefined) but is fortunate to have symptoms that only flare up occasionally. Be kind to yourself. Watch more raccoons. Draw Ferris Mewler in further compromising positions. We want to read more blog and books, so do whatever it takes!
“PS. Tell me I just need to get out more and stop eating gluten and I will kick you in the vagina. And if you don’t have one I will make one. From all the kicking.”
I CAN’T STOP LAUGHING. OH, IT HURTS – BUT I CAN’T STOP…breathes starts to giggle BWAHAHAHA!!
sniffs wipes eyes Oh, my. Can I use that as a tag line on my emails? I will credit you…
Well, it’s no ‘maybe’ that we love you.
EAT ALL OF THE MOTHERFUCKING GLUTEN.
If it makes you feel any better, my Friday was spent in the hospital, first for an out patient procedure, then in the ER for a complication. The rest of my weekend I felt pretty cruddy as a result. All 3 meds I was prescribed caused dizziness, but thankfully I didn’t fall down. So win?
Fingers crossed that it’s not lupus but something really simple and easy to treat. Sending you love and positive energy:-)
Venting is good. We’re here for you! Hope you feel better.
I’m sending you positive vibes for helpful answers. I think they’re especially good ones, because I was wishing for some answers regarding the mice I keep finding in my kitchen, and TWO stray kittens showed up in my yard (and are now strays no more, because they live at my house). I don’t know if positive kitten thoughts help with “maybe lupus,” but “maybe kittens” has never been a wrong answer for me. (And this may not be coherent…sorry…still, I think everything will be okay for you soon).
Indeed you are definitely not alone. And ‘maybe vampire’ does sound rather exciting, like a premise for an almost New York times best seller, it would be an obvious shoe in if it were vampire, obviously… ‘She was a girl that almost eradicated a village with her almost thirst, but more humanely she did not.’
As someone who is the Queen of Auto-immune Diseases, I definitely feel you. Every time you go to the doctor they love to tell you “well maybe it’s this, but maybe not because I just want to worry you and I don’t really want to commit to an actual diagnosis. Also there are 33 other things wrong with you so hey here’s some more medication.” It’s frustrating. It’s exhausting, and most of all, it sucks. My favorite doctor’s appointment was telling me that I maybe has lymphoma. I had to give the doctor 24 hours of pee for him to tell me that it was nothing and that it might have been a weird reaction from a different medication that I take for some other health issue. Here’s to hoping that maybe lupus is just a switch of the meds. Lots of love and good health vibes for you.
I’m a big autoimmune disaster too. It amazes me how little the doctors actually know about that kind of thing. It’s also rather strange to live in a body that’s trying to destroy itself on a daily basis. It’s hard for other people to understand, unless they have it too. Makes sense though, I mean, it never occurred to me that one day I would wake up sick, and never get better. I just wish those un-knowing people would stop with all the advice. I’m with you 100% on the vagina kicking.
I read this quote somewhere a while back, and saved it because I loved it so much: “If you tell someone who is chronically ill that they just need to work out more or something, I will personally chase you down and kick you in the trachea. And when you’re on the ground choking in pain, I’m gonna lean down and whisper into your ear: Maybe you should try yoga.” -adhdtommyshepherd (tumblr)
I finally after 5 years got a doctor to see that there might be something wrong,with how horribly tired and achy I am all day only to sit up all night not sleeping
If one more person said I was tired because, what do I expect with two kids, I was going to leave them at their office because I’m pretty sure they told me I needed rest and quiet and I can’t afford daycare just to take a nap. Sorry I’m all rambley, the sun’s up so I’m barely functional.
So nice to know I’m not the only one who doctors seem confused over. Every time I go it is, “Oh! You have X….or not…maybe Y….but you may just need a nap.”
Were you tested for Lyme disease? Lyme can show up in symptoms of many other diseases, including Lupus, MS, arthritis, malaria, etc. Ask for Lyme tests, and there are more than one. The Western Blot is notoriously inaccurate.
I can’t decide if I’d rather be told I had something wrong (and I’m a veteran of the specialist shuffle- “I don’t know, you should go see a (insert random specialist here)” instead of what I hear now… “You’re getting old. Deal with it.”
Assholes -all of them! Ok maybe not all or all the time anyway, but that was just shitty.
Sending you love. I got diagnosed with SLE 4 years back and I know the feeling of “Why do I feel this shitty” and sometimes, it really does help to put a name to it, but at the same time, it doesn’t make it any less shitty, because … as you know, chronic illness sucks. I’m thinking of you here. <3
Congratulations on the “almost-vampireism!!” Way to go! I’m pretty sure I’m a vampire sans fangs because I’m pale as a ghost, hate the sun, and hate garlic. So, I mean, what else could it be, right?
Hang in there sweetie. We’ve got you. 🙂
You seem stressed. Perhaps you should try some lavender to help you calm down. *giggle More Ultra Helpful Advice here…https://www.youtube.com/watch?v=Q_Ecmciv9zI
(And by Ultra Helpful Advice I mean, here, have a ridiculous video to distract you from your “maybe lupus/maybe mutant powers”).
(This comment helpfully provided by Mr. POSSLQ)
Thank you for being you. And thank you for being you in a place where we can sit beside you and not feel so alone. Thinking good thoughts.
Big hugs for you! xo
you have the “able to make people laugh while feeling like crap” super power, and that’s probably one of the best super powers to have. besides flying, natch.
You are most definitely not alone.
I am not-maybe-but-definitely infected with a 35 week fetus, and she seems like the kind of kid who will chew her way out of my uterus in the middle of the night. So I’m having some anxiety?
I agree. Knowing that there really is something wrong is somehow very reassuring. I always hope it will be something very interesting or romantic, like consumption. But last time is was gall stones. Nothing romantic there.
As long as it’s not “maybe rabies,” which is probably the worst potential Lin-Manuel Miranda rhyming verse ever.
I’m going to tell my kids I have “maybe don’t give a fuck” every time they whine about being bored during Summer vacation. I love this new “maybe” diagnosis tool.
Looks like you and I (and a lot of other people, too) are heading for immortality. Because, doctors. What the fuck do they know?!
SuperLupus sounds like the worst rollercoaster ride EVER. Looking forward to your good news when you can share it.
You are not alone!!! Even when you’re alone, so that may be creepy, but hopefully it’s comforting. Hugs to someone I’ve never met and may never meet, but who continually brings light to me.
Have you been checked for Lyme Disease yet?
I have maybe lupus too – and have for a decade. My “maybe lupus” refuses to play by the rules the rheumatologists have about how “actually lupus” should behave but it doesn’t behave like any of the other similar diseases either so in limbo I stay. You’re totally not alone and “mabye lupus” can be a right jerk when it wants to be.
I can’t eat gluten, and I fucking. hate. it. If you can eat gluten, there’s no reason to not eat it! And while I’m spitting my own fire, I’d like to make a formal request to the powers that be that the idea that gluten-free = healthy be thrown into an active volcano. I want white bread. Soft, squishy, white bread. I don’t want to pay $6 a loaf for burnt bean flour crumbs.
Sorry you aren’t feeling well Jenny. I have “definitely lupus” and it is challenging. Here’s something that happened to me when I was in the “maybe lupus” stage–I kept getting sicker and sicker but I still took my tiny children to the pool everyday and then came home and collapsed into my bed and slept for hours and hours. They couldn’t figure out why I was getting sicker and sicker. Finally they decided it was lupus and so I did some deeper research. As it turns out a symptom/side issue of lupus is photosensitivity–basically an allergy to all kinds of UV light. This can happen to people even with medically induced lupus. It can give you a rash but it also leads to joint pain, extreme fatigue and a sensation of burning in your joints. My hours at the pool with my kids were not actually the best thing I could do to keep things normal for everyone, they were making me get sicker. I have figured out through trial and error over 7 years that I am super sensitive to sunshine and florescent lighting but LED lights are okay. Halogen lamps are not great. Anyway, just thought I would mention it because I wish a medical person (or anyone) would have mentioned it to me in the “maybe lupus” stage. It wouldn’t have cured the lupus but it sure would have made that particular time a bit easier. (please don’t kick me in the vagina!)
You kind of blow my mind. In a fabulous way. You deal with your shit, and I do mean you DEAL with it, and you seem to keep an eye toward the positive. It’s beautiful. And inspiring. And I am in awe of you. Truly.
The first time someone said there was a thing called lupus I wondered if it was people who turn into rabbits. I’m not sure what Rabbitman’s powers would be though.
You are not alone. <3 Lately, I’ve been stuck in my head because I have been pushing my limits socially for my boys and my Social Anxiety is not happy. My motto lately has been “I don’t want to people, but my boys need to, so I have to.” I always promise myself some down time with a book at the end of the night. I am currently reading The Lake House (Kate Morton), Goblins (Brian Froud funny stuff!), and Furiously Happy. I don’t know why I have decided to read 3 books at once, it might have to do with the constant “people-ing”
YOU ARE MY HERO!!! (SUPER HERO Maybe even?)
I’ve got “maybe fibromyalgia” which I’m super thankful for, sort of. Because if nothing else, it is a great reason to slow down and laugh more. Sending you 10,000,000,000’s of good vibes for being so awesome and inspirational to all of us!! – Mary
I went through this exact same issue. I’m so sorry because I know how stressful this is. For me, I was finally diagnosed with fibromyalgia. Praying for quick answers for you.
I’m with the docs in that I do not have a clue as to what you might have. Misdiagnosing people is too much of a hobby with them.
I wish you better health!
If it could be “maybe lupus,” I would have them also check for “maybe lyme disease.” My son had lyme, and doctors seem very reluctant to test for it for some reason.
I think your superpower is taking really crappy life events and framing them so hilariously that I laugh inappropriately loudly at work, only to realize that beneath your wicked humor you’ve hit on some very deep human truths. I’ve got a “probably brain tumor” and my husband has a “definitely bad heart” and also “very likely lupus” and — although we’re screwed, from a health-insurance and immortality standpoint — we’re still very much happy and in love and alive. So hang in there! No matter what the diagnosis ends up being, I hope you’ll start feeling better soon and that the good days will far outnumber the bad. All my best to you, Jenny!
Raccoons are mean little bastards.
Hope you feel better soon!
You’re an inspiration to so many people. You rest, doctors don’t know everything but hopefully they can figure out what is going on with you as it’s better to know than wonder. “HUG”
Lupus isn’t impossible to diagnose. There are meds to control it – they are more or less the same meds you use to control rheumatoid arthritis, fibromylagia, and the other similar auto-immune disorders, which means you might already be on/have tried them. Rest IS good for you, but it won’t cure you. Please don’t kick me in the vagina. 🙂 My SIL has Lupus, my MIL has RA, and I have fibro & AS. SIL was dx’d when she was 15 and she’s 34 this year, so it CAN be lived with. I am just really really hoping you don’t have it!
Ah, autoimmune disorders- great fun! Hope your days continue to be ok
You are utterly not alone. We are always on the balance of really wanting to have a diagnosis for my daughter so there will just be a damn name for it/people will stop rolling their eyes at us versus not wanting a diagnosis because that would mean it actually has a name.
It’s dementedly delightful to laugh out loud at how someone else is dealing with the same sort of stuff. Many thanks.
It took 7 years and 3 doctors to be told I’m infertile because of PCOS. Thanks??
And I’ll totally kick someone in the vagina on your behalf if you’re having a low-energy day. Those MFers deserve it.
You should allow pics in comments. Because even if you’re doing well and you’re just venting I’d leave a picture of my puppy just to make you smile. He is the grumpiest dachshund on the planet but he does this adorable thing where he rolls in the grass and lets the sun glint off his cute little chest and refuses to get up until you pet his soft little belly and it’s so hard to be upset or venty while looking at him while he’s doing that. And I would leave a pic of him doing that here.
This made me laugh, and I needed it! I have two rare diseases that I was lucky enough to get diagnosed, but unlucky enough to have no one really know anything about. That is among a plethora of other diagnosis too. It sucks, hang in there.
I would never tell you to stop eating gluten. Instead, I would offer to bring my pastry chef daughter to your house and she would bake you some delicious gluten-filled things and I’d make guacamole and we could eat all the food and drink wine slushies and have a grand time thinking about what superpowers would be the best to have. Wonder Bloggess powers activate
I think the rule is you can only have one major medical thing at a time. You are already over the limit, so therefore you do NOT have lupus.
The other week my brother-in-law went to the doctor about a lump, which the doctor said was almost for sure cancer, so then the whole family gets called about the cancer and is really, really worried and upset. Then the biopsy result comes back and shows it was never cancer and isn’t even all that bad, which just goes to show you: the people in white coats are terribly guessers.
When I was in my 20s I had some weird physical problems (in addition to my usual dysfunction) and I had all kinds of tests and also had “maybe Lupus.” But apparently not since I’m now 51 and don’t have it (the weird joint problems I used to have went away – or I’m aging backwards! That’s it! That would explain my pimples and temper…). I have replaced my doctors with the internet and Discovery Channel and have done quite well.
You are so not alone! Like you, I’ve had “maybe lupus” for years. Having RA and Hashimoto’s though, they can’t decide if it is one if those acting up, or lupus setting in. Theb, a few months ago, I started breaking out in hives all over, and itching from head to toe. The allergy testing showed that I have zero allergies, so they figure autoimmune. Something new or existing? They don’t know-it’s not presented enough symptoms to diagnose! So I have to get sicker before they can figure out what is going on. But here, let’s put you on an immunosuppressive and see if that helps. Now I’m terrified every time someone coughs or sneezes near me. I’ve lost almost twenty pounds started it, so the question now is whether that is a new symptom, or is the immunosuppressive stopping something that was making me gain weight? I sincerely empathize with you, it is beyond frustrating!
My sister has Lupus. It can be sucky. Hoping your “maybe lupus” turns out to be “not lupus”.
Oh my gosh, I’m right with you with the “Maybe you should get out more and stop eating gluten”, just add: Cut out dairy, cut out refined sugar, get more sun you’re probably vitamin D deficient, stay out of the sun it’s probably making you over-tired, exercise/social/do more outdoor activities, cut back on your activities because you’re over-scheduled and that’s stressing you out, cut out all red meat it makes you fat and tire, eat more red meat you’re iron deficient, get your thyroid tested, sleep more, sleep less you’re sleeping too much. And the list goes on and on and on…because everyone is a freaking expert these days.
Maybe the issue is not enough gluten? Just to be on the safe side, you should probably have Victor run out and get you two dozen donuts.
LMFAO! I think your brain is just fine. Although, that means there’s a distinct possibility that mine is broken too. Oh well. Await your news with bated breath!
I had maybe lupus for years until they figured out it was adult onset food allergies. I’m not suggesting that is what you have. Only that I sympathize. Separately, I have surgical scars (from 3 separate surgeries related to a birth defect) that are continually growing & attaching to the organs in my abdomen. It’s messing up my digestive tract & hormones, which are causing my heart to spasm randomly, keeping my up at night & from exercising effectively. So I’m tired, hormonal, anxious, & my immune system is weaker than it used to be. The only fix is to surgically remove the scar tissue, but that poses it’s own risks, & the scars would come back. I can mitigate some of the symptoms with meds & a strict diet. I just have to get used to the rest. It sucks!
Welcome to the club. I have Maybe Sjogren’s Disease, which is a second cousin, once removed, to Maybe Lupus. Since there’s no cure for either the actual version or the Maybe version, I’m ignoring it and calling it post-menopausal wonderment. Cheers to us!
Well House always said it was lupus at first, and it hardly ever was, so there’s that. I would t worry about it too much.
You should buy some steel toe boots for all the vagina kicking and creating you may have to do. And name the. Something like “C*** Destroyer”
The problem is you aren’t eating enough gluten. Cinnamon rolls, cake and fresh baked bread cure everything. Except Celiac’s.
Excited to hear the pending good news! I’m going to keep my fingers crossed for you that this is mutant powers or even vampirism, although the former is your best bet!
I’m so sorry for what you’re going through. You’d think in this day and age doctors could figure things out a hell of a lot faster!!! I had a friend who fought depression for YEARS, only to find out in her 50’s that OOPS! it was just her thyroid! REALLY? WTF?
Right there with ya, Jenny!!! I have lupus (maybe)…but am gonna use the chronic vampirism the next time somebody tries to sell me something. I bet there isn’t an essential oil to cure THAT! 😈
Ugh! Medically induced other diseases are the worst! Hey, this will make you better, and yet sicker all at the same time, good luck! Sorry you’re in the midst of this, but glad you’re headed to some answers! Also, not for nothing, but Vampire Spiderman would be so badass!!
Having maybe-lupus just means that you are in a small and select group of people, and that is a kind of super-power in itself. It also means that you are currently a bafflement to modern medicine, which is also a super-power.
So this means that you are a vampiric werewolf with the ability (probably) (ok, possibly) (just don’t test it) to grow back your arms if they are cut off or even to grow back a different pair of arms (octopus arms could be handy) and also you are spider-woman too.
My only super-power is to be contented without the whole going outside thing taking place (mostly). I can lend you that for whenever you need it though
You are not alone! Reading about your honest struggles makes us all more honest about what is going on with us and perhaps a little more kind about what is going on with others also. Plus, you are hilarious and brighten up the world around you, even in the midst of your struggles, which is a pretty cool superpower to have. (Take THAT, “maybe Lupus.”)
I try very hard not to look at the end of your posts before I get to them, but I was halfway down when the GIF showed up. Had to stop, laugh, show my son, and then carry on. And then there is the JOY from reading all the comments. I love this community. Finally, for the record, I took my dog, best friend and her daughter for a long walk in the urban wilderness this morning. I am grateful.
I hear you. We’re all here for you. #bloggesstribe
i was about to run outside and celebrate being healthy! then remembered i’m actually miserable and dreading foot surgery (Friday). Maybe I’ll go limp around the block and give people the gift of staring at someone sympathetically – that’s good stuff, right?
So my granddad is in hospice care now, with definite mesothelioma. He’s having good days and bad days, and days where he sleeps a lot and days where he’s wired like he’s OD’d on caffeine. Unfortunately today was a sleepy day, so he didn’t know I visited after work.
I tell you this to put into perspective my statement that I needed the laugh you just gave me, even if it was at the expense of your health issues, and I’m not laughing at your health
Venting is totally medicinal, and maybe is a cure for maybe-lupus. Who knows? But no matter what, we’re here for you and ready to provide bowls of pasta and raccoons. The raccoons won’t be in the bowls, obviously. Unless that would make you happy. In which case, why not?
Just thought I’d tell you that you’re awesome.
tea
I’m approximately a year out from a diagnosis of Definitely Cancer, so I feel you. When I’m taking my chemo I pretend that I’m the Dread Pirate Roberts building up my tolerance to iocane powder for my eventual confrontation with Vizzini.
“I’ve been alive all of my life and statistically that’s the way that immortality begins”
– brilliant!
Hopefully they’ll find out that it’s something cureable, and then cure it.
hugs
My daughter just binge-watched House this entire week. It’s not lupus. It’s NEVER lupus.
However, lupinotuum is Latin for werewolf. Maybe the Doctor meant lupinotuum. So instead of pre-vampirism, you’re a pre-werewolf? That could be pretty bad-ass.
Vent away…we are a tribe and sometimes it needs to be done.
And Oh! It’s a full moon. No wonder you feel all bad. DEFINITELY sounds like an advanced case of lupinotuum.
Do you do a lot of work with sheet metal or are there maybe rolls of random barbed wire or other shards of metal in your home? If so it’s maybe tetanus. Maybe tetanus is sometimes misdiagnosed as maybe lupus. Don’t tell Victor as I assume he might not be super opposed to you having maybe lock jaw.
You are definitely not alone. I feel I must add something. Why are doctor’s so shitty about giving news? I went through that with my autoimmune thing and then once I had a routine pelvic exam and they called me and a woman said that I had cysts and needed to come back in. I started hyperventilating and said how many cysts? She had a difficult accent to understand and I was trying not to panic but she kept saying cysts over and over. I had to wait a couple weeks to get back into the doctor’s office and talk to them personally. They told me it was one very tiny cyst that would resolve on it’s own. I tried to impress on them the fact that the stress they caused me probably made a bunch of new cysts grow. Why aren’t they better at this? “Maybe Lupus” is a very sucky way to be told. They should wait until they know for sure. In the meantime, there are an infinite possibility of things it may actually be and I’m glad you are running with that. I like the vampire idea, myself.
You might consider that they think you are turning into a texas bluebonnet, lupinus texensis.
I had “maybe lupus” once, and it turned out to be “not lupus” but it was rheumatoid arthritis, which probably is better. There are treatments if you do have lupus, but I am hoping “not lupus” for you.
you just need to get out more and stop eating gluten
Well, that just sucks. I hope the other tests can rule out Lupus because I am sure that having RA is quite enough to deal with. Sending you love and hugs. I read Furiously Happy when it first came out and now I am listening to it. Thank you for being you and sharing it with us so we don’t feel so alone.
You aren’t alone either. Lots of us love you😊 Just a thought: I was once told I might have Lupus. Then it was thought I perhaps had a rare blood cancer. I had to get a bone marrow biopsy. What was it? Severve B12 deficiency. So…..you never know. You know what else a severe B12 deficiency does? Fucks with your head. Really. It’s a never ending battle for me but at least now I know one of the demons!
Options
1. Burn sage and get to see the hunky firefighters again.
2. See if you can successfully mate Beyonce with another large yard animal-perhaps a nativity scene-I mean you are already going to hell-let’s go in style right?
3. Have your daughter do your make up so you actually look like a corpse and invite people over for a visitation-or don’t since you probably don’t feel people friendly-maybe have an online visitation…we can send flower emojis
4. Watch “The Princess Bride.” Theres almost nothing that cannot be helped by a viewing of The Princess Bride. have fun storming the castle sister.
5. Donuts. Same principle as the above.
Remember how important you are too so many of us. We love you, we appreciate you slogging through and reminding all of us that we can slog through too.
KNOCK KNOCK MOTHER FUCKER!
It has been a Monday……. That has now improved. Thank you. Be well. Something something motivation good good good vibrations..
I’m broken, too, due to medicines. It’s worth it though, because I’ll happily take “broken” over “very dead and it hurt the whole time I was dying”.
I have a mother-in-law that is trying to shove supplements down my husband and I’s throat. (Or is it me and my husband’s? Or our but then you wouldn’t know who our was.) Fish Oil, probiotics, cranberry capsules, multivitamins, B12, C, Saint Johns, Melatonin, it goes on. He’s already taking meds for Cholesterol and stomach issues. I’m taking them for Cholesterol, high blood pressure, type 2 diabetes. Our first mistake was accepting the fish oil. That was the foot in the door. If she had her way we would be taking 30 pills a day to make us better. And don’t monitor my pop intake. I eat no sweets or junk food. Don’t preach to me about my morning Mountain Dew when you are on your fourth cup of honey sweetened coffee with whole milk creamer, that you follow up with a bowl of fruit loops while I eat a bagel with low fat cream cheese. My dinner is balanced with a healthy meat, veggie, carb/starch. Yours is a sandwich slathered in mayo. Or spaghetti smothered in sauce. And yes, you do have to drain the grease when you buy 80/20 ground meat. You not doing that is why I can’t leave the bathroom after eating your meat sauce or chili.
Umm… I might have went off on a tangent.
I just love modern medicine. It’s all “hey, we’re going to cure you but we need to try and kill you first. And oh hey, maybe if you don’t mind, we will give you something 10 million times shittier to die from as a side effect cause DRUGS. Can’t live with them, can’t live without them, that’ll be $40 per pill to cover the lawsuits”. I’m sorry to get that off my chest here. Just know where you are coming from. I get all the great side effects and adverse reactions to any drugs I take. My doctors think I need more drugs to fix that, but my body cannot handle all the systemic overload. I wish you all the best in your journey to find out what is wrong.
Glad you won’t be testing the limb regrowth theory 😉
Jenny, your superpower is having a really good immune system (OK, too good, but it’s still an accomplishment). Also, you help people, like right now you are helping me study for my medical lisencing exam which is in less than two weeks ;0) A good way to tell the difference between drug-induced lupus and non-drug induced lupus is that drug-induced is more likely to have anti-histone antibodies and NOT have dsDNA antibodies (they both have ANA). I’m assuming your rheumatologist already told you that though ;0). Also there are lots of drugs for RA (unfortunate for my malfunctioning memory, fortunate for you) so you should be able to find another that works better for you if the anti-TNF is causing the lupus-like syndrome. Hope you feel better soon!
Hmmm…the opposite of Lupus is SUPUL. OR supple and that means bending or moving easily or gracefully which is much more aspiritational for us to share:) Or secretly hate when we can’t or don’t wanna. I wish i could post pic’s of my cat’s enjoying their shark (i can’t help but spread your love) and they do SO much so that they cannot bare sharing – so another one is on the way. Two sharks with full belly of cat. Think of that:) And we’ll eagerly await your surprise – they are nothing but AWESOMNESS!!
We’re with you always;)
XO
Navigating the medical system is the worse. Take care as best you can.
Being an “almost Lupus ” myself I use my 90 year old grandmother as inspiration. She was “almost Lupus ” starting in 1953! So I say PFFT! to them and their doom and gloom reports!
You are not alone.
Listening to me vent will not make you feel better, but now I have to vent, too (I am so sorry). A few years ago I had maybe lupus for a few weeks. The inexpensive blood test said “Yes, darlin” and my doctor decided we should wait six weeks and try it again. At that time, I had barely even heard of lupus, but in the next two weeks probably every other person I had any interaction with spontaneously and for no reason whatsoever told me horrible stories about someone they knew who had lupus.
Climbing the freaking walls by that time, I called the doctor to see if we couldn’t hurry up the re-test. And she said (get this), “We can do a different blood test if you want that’s much more conclusive and have the results in three days. I just didn’t do that one because the insurance companies don’t like it.”
I don’t see that doctor any more.
You already have super powers, dealing with RA and anxiety and being a mom and wife. Maybe Lupus? PffffT! But I hope that’s not it and they just figure it out, and maybe doctors could get some better bedside manners. My son is tall and skinny. He has grown 4 inches in a year. He has what appear to be stretch marks on his back. I asked the doctor if they look like stretch marks. His reply, “Well usually obese people get stretch marks.” uh thanks for the insight. Then he asked if my son was cutting himself. Yeah, across the lower back. We had a good laugh. I hope you do too.
Where the fuck is House when you need him? He’s probably whoring it up. Bastard. He’d have the answer after 5 wrong guesses.
Well according to House, it’s never lupus…. except for that one time… <_<
Feel better and enjoy a virtual hug… virtual hug
PS I love the raccoon gif!
I’m donating blood today. So I guess I’m sort of visiting a kind of vampire. One that can come out during the day, and also doesn’t actually drink my blood. At least, I hope they don’t. I’ve never done this before. So, perhaps my blood might help save someone’s life one of these days. That’s my happy thought for the day. I’m focusing on that, so I don’t think about The Needle.
Lucky you! With your blog, You never are truly alone.
Hi I have read what you have said, maybe lupus. Which means many strong medications. We learn to side on the lowest level of care first. I know others are reading my post. I have posted about this before and received a lot of hateful responses. I have the testimonials, so dont do that. I am trying to help by bringing NEW AND PROVEN EFFECTIVE PROCESS. Mood disorders which include depression, anxiety, OCD and Anger, yes anger, feeling, stressed, overwhelmed, lack of focus and sleep issues are ALL JUST TEMPORARY CHEMICAL IMBALANCES BECAUSE OF LOW SEROTONIN. To feel better, you must raise the serotonin. When good things happen serotonin goes up when bad things happen serotonin goes down if you serotonin fourth to low you will start to trigger your genetic predisposition and present with mental health symptoms if your serotonin continues to full lower you will eventually have a full blown out mood disorder to feel better you must raise your serotonin naturally since it’s in is impossible to control all the events in your life the new natural option is to consume the required vitamins and minerals in a mega three and six that will raise the serotonin in the brain using synergy I have been doing that with my clients For the last five years by using my product Wellotonin. I’ve seen amazing success. Wellotonin is natural safe healthy effective works quickly and best of all there’s no withdrawal and there have never been any reported side effects ever. Is my suggestion that you look at my website Wellotonin.com I have used Wellotonin for over 500 clients Using Wellotonin has reduced their counseling from several months to Lestin two months. Like I like to say it is just that simple . Before anyone out there that’s thinking I am minimizing how you feel no this I personally created while atoning because of my own very severe obsessive-compulsive disorder or OCD which manifested into intrusive and self injuring thoughts which I would like to learn occurs when the serotonin false too low . Again I am just trying to help no hateful remarks please instead use your time and take a look at my website Wellotonin.com any questions I can be contacted at naturally well Inc. to again I am just trying to help no hateful remarks please instead use your time and take a look at my website Wellotonin.com any questions I can be contacted at naturallywellInc.@gmail.com
sending much love and unicorns and rainbows your way xx
“PS. Tell me I just need to get out more and stop eating gluten and I will kick you in the vagina. And if you don’t have one I will make one. From all the kicking.”
Be sure to keep off GOOP, dear. I decided I needed to be enraged last week, so I checked it out, and they ran an infuriating article advocating just that. No comments section to rant on, alas. Now I hate Gyneth Paltrow EVEN MORE.
You are SO not alone. I’ve had “maybe lupus” for 3 years now. My ANA tests keep coming back bad, but not quite at the threshold for a diagnosis. I also have been “borderline anemic” for 16 years and consistently have trouble sleeping at night, despite being exhausted all day. Vampirism does seem like a logical conclusion (I even have Transylvanian ancestors!), but it also isn’t curable, so I’m not rooting for it. I am very sympathetic to your chronic pain as my mother has had it for many years. The closest I’ve come is tendonitis in my wrists which I’m told can only be helped by not using them. Yes, at 19 I was told I could never use my hands again or I would be in constant pain. You’re SUPER helpful sometimes, Modern Medicine.
Thank you for posting about your “maybe” diagnosis. I got one of those this weekend via FB message with my doc! I asked for it. Let me clarify -No, I don’t think I deserve the maybe disease. I mean I literally asked him what could be causing my particular symptoms. His answer really bummed me out because it seems that every treatment that is supposed to help save my life (I have cancer) or drug prescribed to alleviate the symptoms of the treatments saving my life all seem to cause some other new disease, side-effect, or illness. And then of course, as you mentioned, more blood tests and possible more medication for the rest of my life. But there it is – the rest of my life. And you are right, I’m here. I’m here to be bummed out or complain. And, what’s one more 5mg pill in the morning? If it means I’m around to see my kids get married and have babies (hopefully in that order!), then I’m okay with it. Not always happy, but okay with it. Thank you for sharing the video. It made me laugh and I need to laugh today. Good luck with your diagnosis!
Thanks for this post! I’m going thru all the same! It’s so fantastic to finally have negative test results of IgG, and other mutant antibodies..next time I see my pulmonologist , I’m going to tell him to kiss my ass! And see it’s not in my head! Meanwhile going to drs everyday, for weeks so they can each do their part of the discovery mission, is rather tiring. And I’m already
Too tired!!!! Good luck with all that, just take care of you!!
My Rheumatologist NP just told me she doesn’t know why I hurt so much! I told her I didn’t know since I have only had RA since I was 1 (One year old) and now I’m 43 haha Good luck and thanks for the whit and positivity! I know none of the names matter and it only matters that someone listens and loves you! Much love and happy thought 🙂
I’m sorry. I can relate to some degree because every time I see my docs they change the autoimmune condition they think I have. Is it RA, lupus, a mix of the two, or is it “just” hashimoto’s, etc. etc.
All I know for sure is that the immune system is incredibly complicated, incredibly cranky, and a good doc will admit there is still much to learn about it.
Sending love and healing energy. Extra strong today because it’s a full moon on the solstice, so if you feel a little dizzy, don’t worry, it’s my fault.
Super Lupus might be a good name for the band of maybe-lupus musicians that are surely out there. I’m just saying. Healing thoughts to you!
” “maybe lupus” is pretty similar to “maybe immortality” because neither are confirmed so instead of focusing on the first I’m going to focus on the latter because I’ve been alive all of my life and statistically that’s the way that immortality begins.” I LOVE this logic, and I’m going to start applying it to my own life. You completely rock for pointing this out.
But seriously — feel better soon. And the gluten-free stuff is getting better, but most of it still tastes like butt. So stay far away from the gluten-free nonsense.
Big hugs and glittery unicorns (and therapeutic raccoons) from all of your fans, including me.
That vagina line is pure gold. I intend to use that frequently. I hope that you soon have relief and feel some degree of better. You are adored and loved beyond measure.
I love that you mentioned that someone might not go out to lunch because they didn’t feel up to it. That happened in our office and none of us thought of that.
Thank you so much for posting this today. I just found out I’m allergic to eggs, which adds to type 1 diabetes, arthritis, asthma, fibromyalgia, and celiac disease. I felt like a medical freak then I read your blog and it reminded me to be happy with the little things – my 15 year old is driving and I haven’t had a heart attack yet, my dog is the funniest damn animal I’ve ever had, and I’m not allergic to coffee…yet. So thank you again!!
Solidarity even though in my case it’s more a matter of “WHY ARE ALL YOUR TESTS CLEAR THIS MAKES NO SENSE”
We lost our niece to complications from Lupus early last year, when she was 22.
I’m not saying that because I want you to think you might die. I’m saying it because I need to keep her name and memory alive. We miss our Madison Pearce. Her artwork — which is similar to your pen & ink drawings — lives on, and proceeds from her greeting cards are donated to help fight Lupus. http://www.lenoxandlucy.com/about.html
LuckFupus
DRUG INDUCED LUPUS IS CURABLE. Please google it. I had it due to a reaction to another medication. It has the same symptoms as lupus.
The raccoon looks like it’s trying to rip off the kitty’s head so I’m a little freaked out.
But my 11-year old has a rare autoimmune condition (so rare that the doctors at the National Institute of Health have no idea what’s wrong with her or how to help her) so I totally understand how helpful “maybe Lupus” is.
You are definitely not alone. I had drug-induced lupus a few years back and it was pure hell. Luckily, after I stopped the medication causing it, everything went back to normal. I hope you find the answers you’re looking for, because not getting a diagnosis and being told it’s all in your head or that you’re making it up is a special kind of torture. Ive been there too. Best wishes. 🙂
You are never alone, sweet Bloggess. I too have struggled with getting accurate medical diagnoses (other than the VERY obvious depression and generalized anxiety). So far, when I lived in Indiana, I saw a sleep dr with a background in pulminology who put me on a cpap machine bc he didn’t know why I was sleeping all day and still tired. The cpap kept me awake and made me more exhausted. He sent me to a neurologist sleep specialist who did a sleep study and determined that I’m narcoleptic. My orthopedic dr in Indiana fixed my stress fracture and torn labrum, then determined that I “feel too much” when I still had hip pain after all the PT and acupuncture. He suggested another doctor who concluded fibromyalgia. So when I moved from Indiana with my “Narcomyalgia” (although my kids prefer to call it Fibrolepsy), my new Doctors here in Florida aren’t even sure what to think. The first sleep dr said NO not narcolepsy. The second one said yes, it is narcolepsy. At this point, I don’t know who, or what, the hell to believe except I’m on downers to sleep and uppers to stay awake well enough to drive my kids around and I have chronic pain in my completely healed hip. I’m hoping, like you, that it all morphs into some kickass superpower that makes me stronger than my anxiety and less afraid of the flying cockroaches that everyone around here calls palmetto bugs. <> Medical diagnosis nightmare team, UNITE!
Your posts are always so timely. I’m in a “WOE IS ME” funk after this morning’s doctor’s appointment even though it went relatively well. It’s just exhausting explaining a complex medical history with weird overlapping unexplained symptoms to yet another doctor. I wrote a concise two page summary of my fucked up history so that I wouldn’t have to work it in piecemeal to a conversation but naturally they were still copying my records and the doctor hadn’t read them. LOOK AT MY GODDAMN RECORDS. Ugh. At least she agreed with me that my last doctor was wrong about the things I thought she was wrong about, so that’s a plus. I like being told I’m right. I don’t like being reminded how sick I am though. She asked me what my medical background is because I was using medical terminology. “Uh. My mom’s a nurse, and I’ve been really sick for the last decade, and I bother to read about my diseases.” At least she didn’t say, “Oh my god, you look pregnant!” regarding my definitely not pregnant bloating, because I’m ready to throat punch the next medical professional who does so.
You are definitely super human.
Supernatural.
Welcome to the shitsnacks club, where we all have Schrodinger’s. I’m just making it up right now, but it seems like a good fit for most of us here. Or not. But anyone with medical frustration is welcome. I definitely have Hashimoto’s and Polycystic Ovary Syndrome. Other than that, the only things we’re sure of are that I have boobs, a vagina, and I gave birth almost 26 years ago, so that means I’m female. I have fibro (or not) RLS (or not), Chronic Fatigue (or not), sleep apnea, but only when I’m morbidly obese (which is a lot, lately, but three years ago, not so much). Latest on the table (for the THIRD TIME) is MS (or not). But hey, they ruled out retinal tumors, and at least if it IS MS, then the two previous times we ruled that out gave us a chance to get a good look at that boogeyman. And helped to rule out spinal tumors and Epstein Barr. But I’m for sure on the auto-immune wheel of fortune, so what the hell do I know anyway? Schrodinger’s. That’s what. Oh, and the anxiety disorder and depression, because who wouldn’t be after 15 years of this shit? But you’re so right about the gluten! And I’m adding ESSENTIAL OILS. Motherfuckers, assault me one more time with shit I’ve told you I’m allergic to, and I will feed YOU STEROIDS FROM HELL, 3 benadryl 4x/day and 6 zyrtec a day for two years and see how fat YOU GET. Assholes on PARADE.
May you be feeling much better very soon. That’s my version of an Irish blessing.
Hoping you get the maybe lupus out of your way soon.
Also, now I want to be in a club of people who chopped off their hands to test if they were mutants. Because what if we ARE?!
Have you tried cutting lupus out of your diet?
Ok- I know you won’t believe this but a couple of supplements could really help. 1. Garden of Life Mood Probiotic has great good for you bacteria that boosts your immune system a lot, and the Ashwaganda root in it is very anti-inflammatory – resulting in some benefits for mind and body. And 2: since 70% of all people with depression/anxiety have a genetic MUTATION that affects how you metabolize and absorb FOLATE, and your brain needs this drug to create SEROTONIN , taking a bio-available folate such as DEPLIN can help control pain and improve your brain. Your RA when inflamed causes all the confusion/fogginess you’re talking about – it’s very common and frustrating! You are not alone!
Love the Racoon licking kitten head GIF! And no, you are not alone here. While I am lucky to not have on-going morphous health issues, various family members do. So go ahead and kick those who mock you. I would.
I’ve have Maybe/MaybeNot Lupus for a decade, that is also sometimes Youtestedpositiveforandthennegativefor Lyme Disease, and there’s a family history of our RA presenting like Lupus so we call it Rupus, which then just sounds like a cute old dog. I image it would be a floppy old basset, because their ears and wonky knee legs amuse me.
So basically: your medical mysteries just make you infinitely more relatable to me and I stranger love you but not in a creepy way.
(Old commenter Dingo on an actual bloggy type account that I don’t maintain)
Everything in your “PS.” statement… freaking hilarious (because I wear the same warning label). Hope you get it figured out soon.
Uuuuugh!! The mutant super powers I was hoping for after eating a dozen radioactive eggs and being pushed into every zappy machine known to man have been shit at best. Last year, after getting stuck four times IN MY ARTERIES to see if I was breathing or not (HELLO, morons – in and out, all day long for nearly 40 years), I got the power of FORCE LIGHTNING!!! It would have been completely awesome, except the only one I could shock was myself. All. Day. Long. Sucktastic.
I hope you feel better and you get better news than “maybe lupus.” I still get shit answers like, “Huh. Well, we really don’t know, but your stomach is an asshole and hates you a lot,” or “Anxiety is a bitch. Maybe try staying present when you feel like there is an ice pick in your chest 24 hours a day.” Good times.
I am currently between RA drugs (read: they don’t know what the hell to do with me anymore), but when I was on Remicade IV infusions I used to post to FB that I was getting my gamma radiation so I could become SHE HULK! Alas, I am still just regular me and all the other drugs haven’t produced any cool side effects yet either. Side effects, yes, but not cool ones.
You aren’t alone. The struggle is real. My RA doctor sighs deeply before he enters my room, I’ve actually started making fun of him for it. I’m “That” patient.
I have a friend who is perpetually on the “might be Lupus”/”we have no fucking idea what’s wrong with you” train. She’s found her own ways to manage, including medicinal (and occasionally not so medicinal) marijuana and her own set of foods she can/can’t eat. But what works for her is extremely different from another friend of ours on the “might be Lupus” train. So, yeah, fuck the “gluten is evil” crowd and anyone who thinks there’s some magical natural cure for everything that works for everybody.
Just noticed the part about your injections. I got DRUG INDUCED LUPUS from Remicade, which is similar to Enbrel or Humira. No one believed me when I said that’s what I thought I had. I kept taking the Remicade and it got worse. I knew in my gut it was the Remicade, so I refused to take it anymore. I have permanent joint damage and other symptoms that I think I could have avoided if I went with my instincts. STOP the medication if your instincts tell you that’s it.
I was diagnosed with systemic lupus st the tender age of 12. I will spare the details of my years with the MayoClinic and inform you that I am now 67! I wish you joy as you continue to show true grit on your daily journeys.
I’m worried medicinal raccoon is trying to eat the kitty’s face, not kiss it. Hope you feel better soon and get good news from the medical people.
I do know how you feel. Severe arthritis, allergic to anything with pollen or fur, asthma, fybromyalgia, thyroid removed, vision issues, kidney problems, IBS, depression and anxiety. And to top it all off, menopause is hitting early. Lately, I’ve been having fantasies of running screaming for the mountains, finding a cave and just hibernating. It’s nice knowing I’m not alone. Sometimes we forget there’s others out there who can understand.
You are SO not alone, and I’m with you on the vagina kicking. I have some kind of weird seizure thing that they say I can’t call sezures because I don’t lose consciousness. (I’m sorry, ii will try harder). Anyway, my medical style is a cross between Greta Garbo and a cat. I have told my family that if I feel like I am dying, to look for me under the house. Tired of tests and the “maybes”.
Maybe the arthritis is just your body fighting the change into a werewolf. You could be a werewolf/vampire hybrid, and your body is warring with itself over which beast wins.
I have All the Anemia so I empathize there. Sorry if you’ve talked about this before and I missed it but have they looked into giving you the IV iron treatments? I thought it sounded extreme but then they did it and holy crap it makes a huge difference, like a night-and-day difference. I apparently just don’t digest iron right (no I don’t have celiac and wish people would stop telling me I do), so having it shot into my veins is amazing. After several treatments, it let me get the energy together to actually do the stuff that built the muscles that let me store the iron for later, and not having to fight the anemia constantly has helped a lot with the depression. Plus, I never would have anticipated the boost I get from telling my Traitor Brain, “Bitch I am fighting my own blood and winning, you can take a seat.” I get a little ‘top-off’ every six months or so, so I can avoid the cycle of “Feel great! Get complacent! Ignore tiredness! Ignore coldness! Ignore exhaustion! Eat all the ice! Go to the doctor! Freak everyone out with low numbers! Get eleventy infusions!” I was working on.
The first time I got an iron infusion, I was sitting in the little chair looking at the undersides of my arms WATCHING MY VEINS APPEAR and it was simultaneously creepy and so damn magical.
From a fibro sufferer to you – fuck the fucking people that tell you to stop gluten, or to try their new dietary supplement because they have a million testimonies. These people can shove it!!!
Sending you gentle hugs and some peace.
One of my favorite brushoffs from a doctor was years ago when I asked what fibromyalgia was and he replied, “Oh, you don’t want to have that!” After having had a trach for 16 years because a doctor messed up when trying to cure sleep apnea (he didn’t,) which ended my singing, and quickly learning I had uncontrolled diabetes with ALL the extras at no extra charge, and a book’s worth of other disorders, medical mistakes and close brushes with the Reaper, I have just gotten so tired of it all that I have just given up. I’m taking all the multitude of meds as ordered, but just can’t face another doctor appointment without a damned good reason, like MRSA sepsis and septic shock, which I was gifted with last year. I know that I should give a damn, but just can’t get the energy to care. O well – living in Interesting Times, as the old curse goes.
Thank you. Today is a bad day for me too. I might have this or I might have that. Also more tests. I am exhausted and literally tired of waiting. At least knowing allows me to “get over it” or whatever they’ll tell me 🤗
Thank you for sharing this with me. I am also glad I’m not alone.
I’m sorry about your wacky diagnosis but I know how you feel maybe. I have ‘unspecified autoimmune disease’ and today I have a big deadline at work but I have slept all day long. I hurt and I am exhausted. I worked a lot of overtime last week. I used to think I was just lazy and depressed and maybe addicted to reading. I’ll haul myself in to work tomorrow and catch up. The guilt is the worst part. And the feeling like shit. I am a hermit who is always on a business trip. Odd combo.
Waiting for my maybe-my-cancer-has-recurred-or-not diagnosis…after I have at least 3 more dr appointments and a procedure. In the meantime, I saw an awesome cherry bomb recipe that includes Fireball alcohol that is calling my name and I’m debating spending $60 on a videogame I’ve been wanting instead of waiting for it to go on sale. Your post has me feeling less $ stingy and more $ spendy.:)
Omg yes! If one mores reins tells me to stop eating gluten I will slap them silly! Really? You know more than my team of doctors? Aaauugh! Gentle hugs to you and everyone else.
My English cousin was diagnosed with Lyme. Getting the diagnosis was difficult enough when she’s suffering so many symptoms. She heard “it’s in your head” more times than she can count. She had to come to the US to get treatment for the disease because the NHS only acknowledges Lyme if bloodwork has a complete set of markers for it (not partial). Now on a protocol of antibiotics with high hopes for success. I hope you can get treatment and feel better.
There was time when I had actual diagnosises back when I had insurance, but no insurance now so the clinic I go to REFUSES to acknowledge my autoimmune disaster. So I sit here without meds and hope it magically goes away. I hope your maybe lupus goes away and it’s just a side effect of being so awesome and cure is magical vacations.
That gluten sentence needs to be a shirt.
I pulled a muscle in my neck/shoulder last week and my sister told me it was because I of the half a sandwich I ate the day before. I swear it was nowhere in the vicinity and it had an alibi.
#GlutenForever
I had “maybe lupus” and then “maybe MS” for a little bit, and “maybe atypical optical migraines, we guess?” which actually ended up being some kind of rare cerebrospinal fluid problem and now my medication makes my blood all acidic. So I guess what I’m saying is science pretty much turned me into one of the xenomorphs from Alien.
I hope you feel better soon. Sometimes profoundly weird medical things come on and then spontaneously resolve, so fingers crossed that that’s all this turns out to be.
There’s nothing worse than a “sucks to be you” diagnosis. My most recent specialist practically shrugged when she told me she wasn’t sure what my chronic pain was, but she was very willing to start prescribing medicine for it.
On the plus side, today is an almost normal day for me, so I’m celebrating by making it all the way to the pharmacy so I can grab my meds and actually have cereal in the house again.
Loved this blog. Live them all but this one spoke to everything I am going though. I am going to go with vampire during the change as well. Every part if my body hurts. I think my blood even hurts.
The racoon made my day. Can’t wait fir the good news!
I know that Lupus is serious, but can’t it also maybe mean that you might be a wolf: dire or were? Maybe they got their letters mixed up a bit.
rats!!! but thanks for the video
My son has celiac and juvenile rheumatoid arthritis. Even though he’s been strictly free since he was three, I STILL get advice about how gluten free, positive thought and outdoor time would “cure” him. Gluten free…it was a miracle for us, but it’s not a freaking cure all that makes angels sing in your jntestine. You’re right, random WebMD warrior, it’s possible for a nine year old to be so negative, his joints say eff you to his brain. And the drugs he’s on make him blister and bleed after twenty minutes in sunlight. So…taco kicking all around?
I once heard a woman say that she was going to kick someone “in the clam.” It took me a while to figure out she meant “in the vagina.”
Jenny, I always just do what I feel inside me is best cause you can do what doctors tell you and still die, right…I use essential oils and take Apple cider vinegar every day…google it. Best stuff out there and you won’t die from it…well at least I hope not..
You are definitely not alone. I’m 37 and had the physical medical profile of a 90 year old, back in my early 20s, which was the last time I let them check that kind of thing — especially since a lot has happened since then and none of it has made me any healthier. My genetics on both sides predispose me to living into my chronological late 90s (I’m off to a pretty good start, given the number of times things nearly BUT ONLY NEARLY killed me) but in horrible health ‘by then’ and having lost all remaining marbles, so I’m somewhat terrified of what will happen, considering my health was horrible all along, and my mind is the only thing that’s gotten me this far. Maybe I’ll turn into a grasshopper like in that Greek myth, or perhaps since I’ve always done things a little differently I’ll turn into a Praying Mantis instead….then I can look like some sort of alien flower fairy, and have lots of angsty sex, and my husband aught to be safe as long as he doesn’t turn into a Praying Mantis too.
It turned out I don’t have a variety of forms of Lupus, though. Or untreated Lyme Disease for the past 20+ years. Or any Cancer, just yet. Or quite a few other things, actually, at least as of 8 or so years ago now, when my blood was used for those particular tests. It was part of the process of officially adding Fibromyalgia (pregnancy triggered when I got pregnant 12 yrs ago — although we try to keep the kiddo from hearing that because he’d feel hella guilty) to the long list of conditions I DO have. (Which, by the way, involves a story in which I, too, protested my apparent lack of cool super-powers to go with my mutant status.) I suppose I’ve done at least one thing typically, since that’s how getting a Fibro- Dx tends to work….they spend a lot of time and money and pain tolerance testing for stuff you don’t have, until they run out of ideas and a Rheumatologist is allowed to blame your symptoms on what they can’t actually test for yet. In the meantime, my Disability Claim was denied for the third time because although I deal with too much chronic pain and fatigue to actually move enough to feed myself, most of the time, they decided I am physically capable of pushing a button on a microwave, which according to them means I can cook.
Anyway, I wish you the best with all of it — the bad stuff you’re figuring out, the good stuff you haven’t told us yet, and whatever I’ll get my first clue about the next time I catch your posts. Oh, and I already have a vagina, thanks, although I wasn’t going to suggest you just get out more and stop eating gluten, anyway. (After all, I almost never leave the house even if I want to, and gluten appears to be one of the only things I’m NOT allergic to. They did test.)
Sending you lots of love and happy thoughts from one fellow spoonie to another.
And thank you for wanting to kick people in the vagina if they tell you to get out more ore stop eating gluten. Too many people think it’s “easy” to not be sick.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
If there was ever a safe place to vent, this is it. Thanks for creating this safe place for all of us. And, please vent as much as you need. We will listen without judgement. Hugs to you and your mutating super body.
I have maybe lupus too! It’s been maybe ever since they told me how much “more testing” was. I decided I didn’t care enough to really know. Of course my maybe lupus went away they mentioned it so maybe having maybe lupus cures it or something. Who knows? According to all the doctors here going vegan will cure everything though. I swear if they tell me to go vegan one more time I might actually go cannibal instead and eat the skinny b*tch.
Just watch all those House episodes where they say it’s Lupus only for it not to be Lupus. That will fix everything.
If you’re going to cut something off, I would start with something small like a pinky toe. Nobody uses pinky toes and if you decide to wear sandles you can just tell everyone you lost it in a farm accident and you don’t like to talk about it.
I hope you get good news and that they don’t make you wait too long for a diagnosis. Doctors can be real shits sometimes.
Hugs and forehead kisses.
Maybe you should stay in more and eat as much gluten as you can get your hands on?
Ooooooo! It’s a full moon. Maybe if you get a bunch of friends together and dance naked in a cemetery? The worst that could happen is you raise some zombies, and let’s be real here, that would be pretty awesome 😉
I KNEW you were a Werewolf!!!
My daughter had Lupus like symptoms from meds she was taking for her acne. Went away with her med change. Here’s hoping all you need is a med change. And iron. Lots of iron.
Ew, but not so much iron you poop brinks. That shits painful. (ha! Accidental pun.)
I’m sorry you’re not feeling well. I don’t have enough spoons to do everything I need to do today either, but I’m going to take your advice and enjoy the beautiful weather at lunch. Thank you, Jenny. I’m sending you loving, healing energy!
p.s. I wanted to let you know that you help me every day, Jenny. I’m so happy to have found your blog years ago. There have been several times now when listening to your book “Furiously Happy” has pulled me back from the edge of a “dark day,” as I call them. I’m so thankful to you for that!
I FEEL YOU on the shitty diagnosis with no cure, and “it’s not in your head (it’s real) but it IS in your head b/c it’s your fucking brain being an asshole”. I was just diagnosed with POTS and it’s great to have a name to put to the symptoms, but it sucks. Invisible illnesses suck. My POTS is JUST as valid as somebody else’s cancer. Sorry, I’m very sensitive about all of this right now, and I’m also crabby.
Also “My point? If you are healthy today go and enjoy the shit out of this day because it’s a godamn gift.” PREACH!
Funny (?) bit to my diagnosis of POTS? My neurologist told me that I’m “a…difficult case”. NO SHIT! Everything else about me is difficult, so why not this too? (Who else in the world gets something called Ocular Migraines with NO HEADACHE?! That shit’s just not right!)
Oh Jenny, this one made me cry big ugly tears. I feel this hard. 3 years so far of incurable chronic illness and it’s unbelievably good for my soul to see someone else express exactly what it’s like. Thank you for saying what I don’t know how to and making me feel so less alone <3
The doctors had to kill my inner ear on my right side to keep me from having debilitating vertigo. It made me completely deaf in that ear, which is fine because now I have an excuse not to listen to people AND I don’t fall over and vomit profusely just because my inner ear is an asshole (just had a thought- asshole killing should always be a valid medical treatment… Except for your actual asshole- you’d die without that…). Anyway, it’s been 4 years since they murdered my inner ear, and now, occasionally, it hears… It’s coming back to life like a friggin zombie…. and who knows if my zombie ear will be as much of an asshole as its former self, and how do you kill a zombie ear??? Anyway, my point is, apparently I have the power of regeneration and I’m not sure I like it… It’s a stupid superpower… Unless my ear becomes David Tennant… Then I take it back, regeneration is awesome… Ok, so this really has nothing to do with your current ailment except that your comment on regrowing body parts sent my mind on this tangent and we both have sucky medical issues on top of mental issues and I can relate to that, and I can relate to turning to cute animal vids as a way to cope! Hope whatever it turns out to be is “here- take this pill or have this minor procedure and it’s all better!” Those ailments are by far the best!
Ha! I have ‘Definitely Lupus’ and ‘Maybe Rheumatoid Arthritis’!
If we’re gonna talk House, let’s say you ‘maybe have testicular cancer’ because you ‘maybe have Testicals.’ Which is as true for strong women as ‘you maybe have a vagina’ is true for bitchy men. Sorry men. if anyone tells me how to eat during my ‘maybe IBS,’ I maybe stabby.
I’ll keep my fingers crossed that it’s Still Not Lupus. I get all these weird things, and my doctor has a big file labeled “Weird Stuff Nancy Gets that No One has Heard of Before” which is very comforting when she’s scratching her head and staring at me. But I don’t have a doctor now, because I got a letter telling me my insurance was terminated, but when I called them to ask what the hell was going on they said new insurance will start next month, but they don’t know which doctors I’ll be allowed to see. So I’ll have to wait until they decide to tell me. And I don’t have a health card for now, so I have to carry around the number MassHealth gave me, and hand it to the EMTs.
So I’m sorry you’re sick, but I’m glad to know I’m not the only person weird things happen to.
blaaaaaaaaaarrrggggggggggghhhhhhhhhhhhh pppppppppthhhhhhhhhhhhhh. and that’s how I feel about that. I feel your pain. literally, I have active (non-remissioning) RA and it sucks donkey balls and it’s awful, and you’ll be fine, you know, once you accept that it sucks donkey balls. just go lie on the couch. that’s where the secret healing happens that nobody wants you to know about. also Orange is the new black just started, so you know… binge on that, it’s gluten free too, so … bonus? 😉 Heart you!
Well, sometimes it actually is the gluten. It was for me, anyway, which I found out only after 20 years of being sick and not knowing why. I wish someone had suggested cutting out gluten as a possibility to me, before I suffered for all those years. But going gluten-free is magic only for those of us who are gluten-intolerant, and it’s certainly not a cure-all for anything else!
You said it yourself: “life isn’t always easy, but it’s always worth it.” So are you. Just read both your books in the past few days; you have brought me more joy and out loud laughs than I can count. Thank you.
Once I had a rheumatoid factor of 208… and got diagnosed “maybe not lupus”. But now I’m allergic to life. I don’t wish that on you, but it’s a good excuse to read all of the time. My latest blog post is how I am becoming more convinced that I’m actually a vampire. I wish that on both of us.
Maybe Gluten eaten in a pillow fort cures Maybe Lupus. You won’t know till you get some doughnuts and try…
When we were on vacation in Argentina my fiance came down with a mysterious illness that lasted our entire vacation and just as mysteriously disappeared when we got home. Each day was a new symptom. Fever, soaking night sweats, a rash. Instead of sight-seeing we were Googling rashes and visiting any pharmacy we could find that understood our broken Spanish. The rash spread. We bought new sheets and slept separately. On Valentine’s day at dinner my fiance suddenly could barely stand up. His joints had become so painfully inflamed they felt like they were on fire. He was in excruciating pain all night so the next day I insisted we go to the emergency room. They asked questions and took blood tests but wouldn’t tell us what they were testing for. The next day we came back and the doctor announced, with relief, “Congratulations, you don’t have syphilis”. (We now celebrate February 15 as Not-Syphilis Day.) The doctor predicted the next day the pain would subside but my fiance would have a rash on his joints. Weirdly, that happened. But the doctor couldn’t tell us how he knew this or what it was. We went back home. My fiance took every medical test under the sun (except the one for Syphilis). The verdict… NOTHING. The moral of the story is that sometimes shit goes completely awry and it’s not syphilis, it’s not lupus, and it’s not vampirism, maybe.
Have you heard of Dr. Amy Myers? She has a clinic in Austin and specializes in treating autoimmune diseases. And she practices functional medicine which looks for the root cause rather than just prescribing meds to manage symptoms. Her website is http://www.amymyersmd.com if you’re interested. Good luck!
Jenny, I love you. Not because of the possible vampirism, though that could be pretty awesome if young adult fiction is to be believed. Just because you are you. Thanks for sharing your humor and your joy with me (fine, “us”– whatever, entire internet) and especially for sharing the hard stuff (which is decidedly less glamorous). Many people would try to hide their less-pretty/ moderately-scary parts from the rest of the world, and keep up the illusion that everything is perfect in their lives. Thanks for being vulnerable so the rest of us know we aren’t alone. <3
My mom had Lupus and I have to get tested every other year for (welcome hereditary genes). Good news, a few years ago, the FDA approved a brand new medication (the first one in over 50 years) to help. There are definitely diets and exercises you can do to help. Avoid sun (which goes with vampirism), stress (impossible), Red Dye No. 40, and bears. That last one might be good advice for everyone. Actually, other than the sun, I think all of the advice is good for everybody, whether they have maybe Lupus or maybe not Lupus.
PS–There ARE absolutely tests they can give you. They are expensive, so doctors try to rule absolutely everything else out first. Which probably ends up costing more than just doing the damn lupus test.
Not knowing is so scary and frustrating!
I am SOOOOO using the kick you in the vagina line. Multiple times. I’ll give you credit as long as it doesn’t spoil the effect.
I’m also having vampiritis these days. Even though we’re 2 hours apart, we should totally have a middle of the night mad hatter tea party! 🙂 My maybe lupus comes and goes, as does my maybe Cushings, maybe RA, and maybe CML. Unfortunately, my definitely fibro is here to stay. (I’m totally with you on the vagina kicking; might I add “with steel-toed boots?”) OK, personal rant over — ahem.
If I find any extra spoons, they’re yours! Feel free to vent any time!
I hope you feel better. It’s been a rough week for emapths who are also depression prone and don’t have much faith in the world.
You are definitely not alone. And apparently I’m not alone in thinking “maybe lupus” means “maybe werewolf.” So clearly you are the mutant offspring of a werewolf and a vampire (hence the “maybe” prefix).
It does help to know you are not alone. And you have helped me through many of my darkest times. So, I want to say to you, “You are not alone. You have been very strong. And sometimes, probably, not strong. But you have a family that loves you and a tribe of strangelings that adores you. So hang on. I’m sorry your body is bored, and creating new weirdness to get attention from the doctors. I say to your body – Calm the Fuck Down! Quit being jealous, and let Brain resume doing wonderful things.” There, hope that helped. Sending you the idea of warm, comforting hugs – ‘cuz not everyone wants actual hugs from a stranger. Oh, and Chambord slushies, ‘cuz who doesn’t like those?
I was going to recommend more gluten myself….
My hobby is collecting autoimmune disorders. I’m up to 3. I’ve been “maybe lupus” for most of my adult life. Thank you for making it fun to be sick. It’s always good to check in and know I’m not alone.
Had to laugh at the gluten-free and taking walks thing. I do both, but they don’t cure my “maybe-something-or-maybe-not”, just the gluten intolerance.
I’m working on curing the next medical thing now – if I get rid of them one at a time, I figure I’ll be healthy just in time to die slowly from age-related problems. Life has a heck of a sense of humour sometimes.
I’m a vampire because I got the diagnosis of protoporphyria two years ago! Vlad had it!! However, I am also allergic to all mammal products, do I would die if I drank human blood (thank you alpha-gal!). And, today, I got the “maybe refractory Celiac” which is some sort of super Celiac no longer treatable via the gluten free diet alone. I am not alone!!! Thank you for this post!!
I am so with you on enjoying the shit out of today. From February to May of this year, I was incredibly fatigued, dizzy, and hypoxic, and no one could figure out why. I still don’t know. I’ve also been in a state of limbo on a pernicious anemia diagnosis for eight years now. All of that sucks. But I started feeling better (the fatigue went away just as mysteriously as it started) in mid-May and I’ve been embracing as much of life as I can get my arms around since then.
I’m sorry it sucks for you right now. I am definitely taking your excellent advice about enjoying today and every day that I don’t happen to feel like crap. I hope you get answers and feel better soon (both of those are the things I was praying for for the entire three months I was sick).
I spent a year and a half with “maybe lupus” only to find out that it was “definitely lupus but weird skin lupus”. It gets easier. The meds I’m on are actually probably the same ones you started on for RA a long time ago. Plaquenil is amazing for me. But probably something you already blew through. It amazes me every time I see my Rheumatologist that he managed to figure out everything from “maybe lupus” to “weird skin lupus” but I swear their brains think a completely different way then ours.
That being said, It will get better! Even if it’s “drug lupus” and not anything else. Just wake up everyday and be thrilled that you woke up. 🙂 That’s how I look at life.
You’re SO not alone, Jenny. As always, I’m with you like an invisible alter-ego…except I have Fibromyalgia, anxiety and depression and I think alter-egos should be more like a parallel universe type thing which means we’re both doing this wrong. One of us should be thin and beautiful and happy and not in pain and not ready to pass out because OH MY GOD WHEN CAN I NAP?!?!?! So…I’m with you. You just can’t see me. So there’s my superpower. YOU can’t see me…which makes me invisible. Right?
So. As your fairy invisible alter-ego love bug, I’m sending you hugs for the “maybe-lupus,” chocolate for the depression, nap for the everything else and love because you’re you. If I had your address I’d have pizza delivered. <3
To Crystal Pauley number 72: please Google ”chronic idiopathic urticaria”
To Anonymous number 77: please Google ”ace inhibitor” + adhesions
If it turns out to be useful info to you, cool. If you’d rather not go there, cool. I tried to walk away from the computer without passing it along, but I just couldn’t. It’s not part of the Positive Thinking Tyrany, I promise, so please, no clam kicking.
I’m sorry you’ve been feeling so bad. Thanks for the raccoon and kitty.
Instead of I’m going to kick you in the vagina, try I’m going to kick you in the kitten. Because classy.
And as a person that’s not a dr. but watches a lot of TV, maybe just up your intake of carbs. It always makes me feel better. Bread and butter, that’ll cure ya. And brie. And bourbon. Basically all the good shit that starts with the letter “B”.
Wait, I lost everything before the raccoon and everytime I read it the raccoon takes it all away again. In fact, where am I? Who am I?
I have definitely maybe Narcolepsy….it’s not bad as far as autoimmune disease go….it won’t kill me, just wake me tired enough to wish i was dead and catalepsy is a great party trick (ask my menfriend). So sorry your body is being an asshole
I’m tired and OK and lucky not to be in your shoes in terms of the maybe-Lupus-thing… but.
Jenny? I get it. I really do. Thank you for venting and sharing with us. I hope the good days only increase.
Dude is that Rocket? I LOVE him. I’m so sorry your doctors and meds, etc. are all being assholes. Don’t even get me started on the gluten police. Your humor lifts me up in so many ways, thanks for making me laugh out loud and often.
You are not sick, you are pure gold. xo
Ohhh honey. I just want to give you and your “maybe lupus” a big hug.
I do think the “maybe super powers” are just as plausible (although depending upon the superpower, maybe not as huggable – I mean, what if your superpower is the fact you’re electrified? That would be terrible, but in still kind of an awesome way because you’d be everybody’s go-to girl when the zombie apocalypse happens and no one remembered to gas up the generator beforehand), so I would definitely go with that.
I’m pulling for you. People who do such a good job making other people happy shouldn’t have to suffer. Well, nobody should suffer, but you know what I mean.
Oh sweet jesus. Everyone, pause what you are doing for just a minute and youtube “What if animals where round.”
That’s my hug. Love you all.
You are definitely not alone! Thank you for your writing that causes huge amounts of laughter in my home. So much that it scares the cats. I now have another reason to read your blog daily… I’ve been diagnosed with fibromyalgia, and I also have good and bad days. Learning to cope through laughter. Love you from afar! (not in a creeper way, don’t worry)
Sorry that your brain is messing with you. If it helps at all, I had a high school teacher who had lupus and when I ran into her like 15 years later she looked EXACTLY THE SAME. So. I’m pretty you’re on the right track with that immortality idea.
In the meantime, I just found this awesome comic that makes me smile a lot. I don’t know the author, and it’s not me, I just like cats.
http://www.breakingcatnews.com/comic/there-are-rainbows-everywhere/
This all reminds me of the time I went to the doctor because I had hives. He poked and prodded me for a little while, shrugged and said “well, could be an allergic reaction…could be cancer, can’t really say.” And then told me to have a nice day. This is why I don’t go to the doctor anymore.
Here’s hoping it’s nothing serious and you feel better soon.
Aside from being wrong in the head, I’m dealing with an injury that prevents me from doing the activity that keeps me from going completely batshit. It’s a tough place to be and I struggle to remember that it’s worth it. But if there’s one thing I do well, it’s fighting. It’s all I’ve ever done, I think.
The next time a medicinal gif is required, I’d like to kindly request a quokka.
I was gonna call my husband to complain about my day. Then I was gonna crack a bunch of harry potter jokes. But I just can’t do either of those.
So instead I will drink a coke, hug my kids, take them out to the pool, work in my book and any and all things that make me happy that I can squeeze into my day. Because you said to. And because you are right.
Love your perspective, your person and your personality Jenny.
Best diagnosis to you.
i can’t make anything better, but I can give you the MESSED-UP sentence I told my husband yesterday. he’s cleaning out his office, because his furniture from work will be coming here so he can work from home. he comes in and asks me where to put my wooden practice sword, and I tell him.,,
“put it in the closet with all the other swords.” messed-UP that when we married I brought six swords into the equation. and all he had were fencing foils which are a different kind of sword and not pointy at all. 😜
So, I Googled ‘worst disease you can ever get’ thinking to give you a ridiculously stupid ‘Cheer Up! At least you don’t have…..” speech and now I’m so freaked out I probably won’t sleep for a week! On my list of “Most Stupid Ideas Ever”, this one is #1 without a doubt. My advice now: DON’T EVER Google “Worst Disease You Can Ever Get!” because you may actually get them just by reading about them. While you aren’t Googling these things…..feel better…..which is what I should have said to begin with.
It’s called borderline lupus – which makes no sense because you either have it or you don’t. How can one be borderline?! I got diagnosed with the same thing. I knew I was going to get some lovely autoimmune disease because everyone in my family (both sides) have them. You need like 5 markers or something like that to get the diagnosis. I had 4. But when I lost weight and got rid of certain foods all my markers are down. I literally have to eat like a neurotic Jewish cave woman to keep my borderline lupus at bay. You, me and Lady Gaga all have the same diagnosis so apparently only awesome women who love gay men get it.
I may have “maybe lupus” too. Glad to know that I’m not alone. I have asked my doctor what is wrong with me so many times. I have heard the “getting out” and “gluten” theories. I have cried when nothing made me feel better. I have to believe that this too shall pass…..someday.
For this: “If you can’t think of anything to do to celebrate being normal then find someone who isn’t and bring them lunch or ask if there’s anything you can do to help because you have no idea how often the people around you go hungry because they’re too tired to leave their desk. If you’re not healthy then I tip my hat to you and remind you that it’s going to be okay, and that you aren’t alone. Life isn’t always easy, but it’s always worth it. Even for vampires.”
Thank you. And hang in there. You’re awesome, even if you’ve maybe got lupus or are becoming a vampire or definitely have something undefinable at this time.
{{{hugs}}}
I’m all for “Maybe Vampirism” and “Maybe Immortality” (which if you think about it, could actually be the same thing, as long as you avoid stakes through the heart). Also, “Maybe SpiderWoman or X-Woman” or what the hell, “Maybe MudBlood Witch who just needs to get her ass to Hogwarts”!
I’m glad you’re feeling better enough to blog. That’s how I know when I’m Feeling Better, in my brain, at least.
Replace “Maybe lupus” with “Maybe MS” and I could have written this post. Well, if I were a writer and damn funny and made the aforementioned replacement I could have written this post. Today I am flat on my back for 24 hours following a lumbar puncture (aka spinal tap…does this mean I go to 11 now?). You’re so right–good health is a DAMN GIFT!!
Super lupus: able to leap tall buildings, right after this nap!
I’ve been a voyeur here for a while, but no more. Jenny Lawson, you write like a beast. You emote like a beast, maybe even a beautiful vampiric beast. And I’m guessing you fight like a beast. I am waging my own special battle and I thank you for sharing yours with such candor and humor. Breathing with you.
I had maybe a strained leg that kept me off work for three months. It turned into emergency surgery with maybe cancer as a side diagnosis. The surgery worked out and the maybe cancer ended up as no cancer. Possible meaning from all that? Your possible lupus will probably turn into a change in medication which will probably make you feel better. Always good news.
It can be a tough road to get through the complications of the human body, and narrow down the problems. It sounds like you are making progress though. I wish that I could wave a magic wand and make you all well, but, the best I can do is send you my best wishes, and prayers for a Healing Hand to help you. Hang in there!
“it may be medically-induced lupus because the meds I’m on can make your blood a bit toxic and bring on lupus, which seems ironic because I’m taking anti-tumor injections to make my body stop attacking myself and that drug might be causing lupus, which causes your body to attack itself.”
It’s clearly Mobius Lupus. Or maybe Schrodinger’s Lupus.
None of us are alone because of you…I just clicked on the comments to say Lupus would make you a werewolf not a vampire and the first comment I read already said exactly that -even on your sick bed you are bringing overly pedantic geeks together across continents xxxx
I always find a nice gluten rich BLT very cheering.
You are so fabulous and thank your for writing about your journey. No one talks about broken brains (that’s what I call them in my house for my young boys) like you. Just when I feel I am alone you write posts like this. Thank you Jenny. You are my hero.
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If you turn out to be ‘maybe a vampire’ and it’s the sparkly kind, it would go fabulous with your Unicorn Club shirt. So there’s that.
Definitely never alone. But possibly cooler than any other living thing has been found to be, in our world anyway, and therefore you’re awesomeness is like a lotus, needing to break through lots of shit and “maybe barfles-mctootie” diagnoses to feel the good air, because OF COURSE no ordinary human doctor can get it right…pssh. Shine on.
Thanks for this post. My 16 year old daughter is doing the rounds of doctors, with a diagnosis of “severe anemia caused by something that isn’t fixed with taking Iron, so we’re thinking auto immune, but it’s not rheumatoid arthritis or UC oh and there’s also near constant stomach pain so we’re thinking Crohn’s but we can’t seem to diagnose it and if it isn’t it might be two separate things so then back to the hematologist and onward to the rheumatologist even though we’ve ruled out RA.” She’s been exhausted for months and in pain since March, neither of which predisposes her to play the medical game of “duck, duck, doctor.”
It’s ok, though. Now I can tell her she’s a vampire. Or a mutant. Although, wouldn’t a vampire have lots of iron? I think she’d enjoy being a mutant. She’s really a nerd.
You’re a marvel and yeah, whatever they decide to call whatever IT is really makes no difference unless they import something from outer space to make you feel amazing. Health is a gift that cannot be measured. I hope you are able to open this in the US because I’m beaming it straight to you http://www.channel5.com/show/the-secret-life-of-puppies-and-kittens.
Someone I know has Super-Lupus. It’s like regular lupus, but you have also opened an animal rescue and take no shit from anyone.
Welcome to the club of “maybe lupus”. Wheeeee! It’s better than my old club “maybe porphyria”–you know, that thing King George had in The Madness of King George? AKA the vampire disease.
Having something with a name, or maybe a name is better than not knowing jack s#%*t about what is going on. I know several people who have lived with it for y ears, it sometimes creeps up in their lives, but mostly just stays in the background.
Good luck with it.
My dad had ‘maybe’ lupus’ and it turned out to be a blood clotting disorder and Addisions disease.
They will figure it out it took them over a year with my dad
Hey! I have “maybe lupus” too! My whatever-numbers-they-use-to-diagnose is just on the edge of yesdefinitely/notquite so I don’t have a formal diagnosis either. I also have “probably Sjogren’s” and “maybe RA” and “maybe PMLE”.
The word “maybe” has now lost all meaning after typing it so many times.
I was maybe lupus for a long time and now lupus. There IS medication for it – plaquinel has been a godsend for various aches and pains.
Maybe you didn’t hear properly. It was most likely Hogwarts on the phone, saying they thought you were maybe Lupine – your patronus, obviously (and quite clearly an admin error, because we know that’s not it). Maybe it was a problem with accents. I’m pretty sure they want you to go teach defence against the dark times, because that’s your super power, helping us to sit with the dark or keep it at bay when we can. In the meantime, build up your energy with lots of rest and healthy stuff, teaching young wizards is hard work.
But it’s never lupus! Ask Dr. House…
On a side note, I’m heading to my doctor right now to hopefully get some answers for myself. Here’s to feeling better soon! :*
I didn’t read other comments yet because I have to comment before I forget what my comment was. In case no one else has mention it, you probably aren’t Spider-Man. More likely you are the Hulk.
I’m “not now-lupus, but still a good chance for future-lupus because ITP”, which is still “my immune system hates me, but not as much as lupus can”
I mean, I heard that if you go out more and eat less gluten, you’ll shit glitter that smells like daisies. Maybe you should give it a try? (Going to get my crotch guard now.)
I love your blog, so you can’t have “maybe lupus.” Please read The Wahls Protocol by Dr. Terry Wahls to reverse any autoimmune disorder. It may involve gluten free, but I already have a vagina, so no need to kick me another one. But thanks. Save your strength so you can get out more. And definitely so you can blog more. And time for another WOW book too. Cheers to your health.
My positive AN results pointed to Scleroderma – not curable, but treatable. I’m not taking happy pills, but my pills took away the pain and I can skip and do cartwheets again. It’s the small miracles that make the difference.
I think it will help if you just get out more and stop eating gluten.
Yes… I’m that guy who has to be an asshole, and I’m wearing a cup so good luck. (Insert evil laugh here) Please, No steel toe boots when the kicking commences.
I’m so with you on kicking those idiots in the vagina and mad/sad that your body is not giving a fuck about you.
On the other hand I’m stoked about the vampire/immortality thing and the superpower thing and the super lupus. I think that if you have super lupus it means you would be able to control all lupus and destroy it. That was my optimism kicking in, it happens rarely and manifests in a bizarre way. I guess that makes me weird and means I fit right right in with The Bloggess tribe
“also her arms didn’t grow back after she chopped them off to test if she was a mutant.”
Quick procedural question: How does one cut off the second arm after removing the first? This has given me something to ponder 🙂
PS: me = not one, but two distinct types of endometrial cancer so all my ladybits are being removed in two days time (except my vagina)… but I still say you should eat all the gluten and watch this: https://www.google.com.au/url?sa=t&source=web&rct=j&url=http://m.youtube.com/watch%3Fv%3DOht9AEq1798&ved=0ahUKEwi30oONtrfNAhVDJpQKHar2AYQQtwIIGjAA&usg=AFQjCNGhpdNR4liwkA6G5veCXettcbeZjw&sig2=vQWBdHMalJRkpXMFRbDlXg
I just need you to know that your constant ability to turn things around, for yourself and for all of us, inspires me daily. You really are an amazing individual. Sometimes when I feel crap or weak my fiancé tells me that I’m the strongest because I don’t just deal with “regular” life stuff, I have extras on top. I can’t help but think of that while thinking of you. You are so strong. It blows me away. I hope you’re “maybe not Lupus” is not Lupus. I also kind of hope you’re a vampire because that would be awesome ! Pretty sure vampires don’t have physical ailments like arthritis and Lupus so maybe this is just the transition are period and once you’re full vampire this stuff will go away !!!
I have Lupus and I really hope you don’t. But the fact that you have RA and are already on the god awful, “you need these to control your disease but they’ll ruin your body and are completely toxic drugs” means you already know the drill. Horrible meds, a disease that glares when it wants and is very hard to predict and treat. I think you should go for altruistic vampire. Suck the bad blood from sick people and then inject them with your super awesome mutant blood so they get better. Good luck.
I hope you’ve found your answer. I’m a fairly new reader, I enjoy your blog a lot and I think it’s very important, esp for people just stepping onto the ‘welcome to depression’ journey. One can identify with so much… “Still depressed? Give us all your blood so we can test everything and be baffled that it all looks ideal.”
Depression has been a part of my life since I was nine. I just learned I have gene variants that mean I not only don’t make enough neurotransmitters, I don’t recycle them, either. Hence meds never working. And other variants that mean I don’t correctly process certain man-made vitamins and they make me physically miserable. But I can let myself off the hook after 25+ years of telling myself to snap out of it while telling others not to ever say that to a depressed person. So, I probably can’t feel better, but after all this time, what I can do is take it easier on myself and feel less guilt for the depression kicking my ass, because science told me why this time in no uncertain terms. I have a lot of practice in remembering the depression is lying, though. I don’t know if everyone would find the info a relief… I go through the ‘it’s never going to not happen because it’s in my genes and I will never be okay’ too, but I’ve been fighting for this long, I’m not stopping now. It always, eventually, lifts enough to remember why and keep going.
Basically, just… I’m glad you might have an answer. Sometimes it comes in a form you never thought it would, but even if that means the struggle continues, I personally find seeing the physical aspect is very helpful. People say ‘mental illness’ and ‘just do this to feel better’ and I can say, “Genes, actually, I have homozygous variation/mutation in the.. blahblahblah” and that shuts them up. I hope they left you some blood. :p
The smell of freshly baked bread has done more good for me than SSRIs ever have, so I’m sending wafts of warm bread your way!
Wow, what a ride you are on! I also have been on a similar ride with ” maybe lupus
” and anti nuclear bloods sky high , the first medication I went on for this made me sicker but also made me skinny ( bonus )
My rheumatologist stopped those and now I’m on anti cancer tablets , my arthritis is pretty settled, tho
I have now got changes in my shoulders , knees and spine , I have ordered a complete new skeleton
And I m waiting for it to arrive ! ( insert super skeletor powers) . I also take anti depressants ( as the dr loves to
Tell you that you are just depressed , well duh of course I’m depressed my body is shutting itself ( not
Literally of course)
I think I want off this ride now
My spidey sense tells me you will be fine , keep writing , I love hearing your great view of this life
Good luck to you
You have survived 100% of your crappy days to date. That’s a pretty great record!
I hope you don’t have Lupus. I went through a health scare last year when I was diagnosed with breast cancer. It helps to watch a funny sitcom, like Sienfeld, Cheers, or Friends. I know watching those shows helped get me through chemo. 🙂
❤ you rock. this totally sucks. they handled that very poorly. thinking you should give them a vagina! i vote for vampire. take care, love.
Hey, I had that same diagnosis at one point quite a few years ago. It settled into Rheumatoid Arthritis. That is a good one because now I can smoke pot as my medicine…….:)
This is probably a crazy idea… but have you been genetically tested for Lyme disease? Not that bullshit Western Blot or ELISA, but a test that screens for the disease’s level of DNA in your system? Along with other tick born illnesses… Might be worth a look-see. . .
Try to feel “maybe better” ; thank you for the medicinal raccoon gif.
That first PS was the best thing I’ve seen all week. I’m having a rough few days with my fibromyalgia, which feels especially unfair, given that summer is usually my best time. So I’ve been a little whiny about it. But that PS cheered me the hell up!
I’ll be sending you all the good vibes. You laugh – and make us laugh – with your stories, which is a wonderful talent to have and I’m so glad you’ve chosen to share it. But know that you are not alone, and you are allowed to vent anytime you need it. We’re here for you.
You’re probably not even going to read this because holy cow you have like 159272373 responses but my son was diagnosed with lupus when he was only 13 and had a few really rough years (including an entire one on chemotherapy) but is doing pretty well now. This may not sound as encouraging as I meant it to sound but since men have worse outcomes than women and children have worse outcomes than adults and my baby has done ok so far, I feel like you’re going to be ok. Yeah, that really didn’t come out as well as I’d hoped but here’s a bunch of hearts to show you I’m sending you my love and hope you feel better soon. <3 <3 <3 <3 <3
I got as far as ” I’ve been alive all of my life and statistically that’s the way that immortality begins.” and I have just been sitting here in awe. I think I have maybe immortality, too, because I’ve been alive all my life, too. And there is a beautiful logic to that statement.
I hope that you are better (and non-lupus-y) soon.
If you get a choice, go for vampire, because you get the immortality and the sexy goth look, and daylight is overrated anyway
Lots of sympathy. Also virtual hugs, if you want them and it isn’t weird having hugs (even virtual ones) from someone who never met you.
I don’t have time right now to wade through almost 300 comments.And maybe you’ve already had this suggestion.But…have you had a Lyme Disease test? Even if you do not live in a “known tick area” it might be a good idea.
For what i’s worth Jenny, a famous phrase goes “Perception is a mirror not a fact”. So while all your ruminations about what could be, might be or isn’t are fine, the simple fact is as long as we hold good thoughts our perception of what others say, do or anything else remains true to us. And at the end of the day, its the truth that matters most. If two or more people have lupus are they called ‘lupi?”
I just finished reading your books again on Kindle. You make me laugh SO hard. And you make me feel better. I broke a little out of my spiral of self-hatred and shame about not getting things done and being so debilitated by my fatigue. I haven’t figured out what is wrong either and it can be very discouraging. You remind me that I can still laugh at life and I don’t have to just hate myself because I’m not cleaning the house. It’s good to be reminded that we are not the only ones who struggle sometimes just to get through the day. It’s good to see someone who struggles being so successful in spite of it all. I hope you find some answers and in the meantime, hang in there. Your writing is always good. Thanks for sharing.
<3
Isn’t it amazing how people commenting on blogs will try to bestow their medical history upon you. Also, did you ever notice that in the House TV show, they always suspected everything was Lupus, before they figured out it was some ridiculous cluster-f*ck of random factors…
hope it’s not maybe lupus and is something minor and totally fixable. and i love the raccoon gif. Very medicinal for me today. Thank you.
“Maybe Lupus” is like “error 404”. It means “something’s wrong but we’re not sure what.” So hoping they can find what it is.
Also, I don’t think you should have to kick people with everything else going on, so I volunteer to kick people for you when they tell you it’s all your fault. Because they are stupid and wrong.
I just want to point out that Spiderman is not a mutant. A mutant is born a mutant and their power usually manifests during puberty. Spiderman was bit by a radioactive spider, giving him power. However, I’m a 42 year old woman who is still waiting for my mutant power, so it is entirely possible that you are a mutant too. I think your power is laughter and hope, despite it all. That is one of the strongest powers out there.
“Maybe lupus” is related to “maybe win the lottery,” so if it’s not one, maybe it gets to be the other?
I hope your doctor can find some answers for you. It is good to have validation. The liver condition I have (ironically, the Vampire Disease – which sounds interesting until the day you Google treatment options and the WebMD page has an embedded ad for Twilight, and then it’s just sad) is incredibly hard to diagnose, and the last time I went to see a specialist (which will be the LAST time I go to see a specialist, long story there), the bloodwork indicated that there was something wrong. With my liver. So i knew that my pain and exhaustion were not imaginary, and it was worth the $50 co-pay just to know I wasn’t completely crazy.
A side note – I hope you are NOT coming down with vampirism because avoiding the sun in Texas would be a right pain in the sun-sizzled bum.
You somehow made Lupus funny. That’s got to be its own type of superpower.
Maybe you can be Godzilla? Godzilla was definitely caused by nuclear bombs, and haven’t you always wanted to stomp around destroying things or at least fight Mothra?
I just watched “Deadpool”. His attitude toward his mutant powers was pretty bad-ass. If you haven’t seen it, I’d recommend it. (Not rated for kiddos though)
I was eleven years old when our family doctor looked at my mother (not me, though I was in the room) and said, “She’s tested positive for lupus.” and the momma turned sheet white and almost fainted. While the doctor went to get her some water, all I remember is thinking, “Well, I’m gonna have to figure out what THAT word means, then.”. I was treated for RA for almost a decade, then in remission for almost a decade more, then it came back a few years ago with a vengeance. I had a rheumatologist who liked to call it “RA…. Plus.” then, most recently, one who called it “Lupus…. minus.”. You’re not alone out here. In fact, I frequently wake up in the morning (Or afternoon, or evening) thinking about the line in “Let’s Pretend This Never Happened” about how we wake up every day wondering what part of us is going to be swollen and painful, as though Freddie Kruger has attacked during the night. Auto-immune sucks. You, however, rule.
We love you Jenny. Sorry to hear this is so rough but I totally understand the need to vent about the crap that happens. You’re our light.
I’m not sure why this post triggered such a response in me…a rather sweary, sort of violent one…but it did. Maybe it’s because I’m so tired of people telling me my gluten-intolerance is in my head (No it’s in my intestines), or that my chronic 20+ years of depression isn’t that bad (umm…how the fuck would they know?), or that I’m being silly for not wanting to go out and be with people (introvert, please for the love of god buy a dictionary and look the word up). Or maybe it’s that today, really the last week, hasn’t been good. Or that I hate uncertainty, and doctors and tests (even if they aren’t my own). Whatever caused my response, I’m with you. Maybe all my “brokenness” is actually a sign of latent superpowers. I’m voting for the ability to fly. That way I can skip traffic.
I won’t waste my time relating my own medical disasters, but you can tell from the overwhelming response just how many people you touched with your post today. If hugs and best wishes could cure you, you would already be healed. Thanks for being here for us, and I send you much love. That raccoon is fabulous!
I have “maybe Lupus” too. Waiting for the rheumatology appt. And FWIW, I gave up gluten for over a year due to gallbladder issues. I lost not one single solitary pound, and didn’t magically get glowing skin or radiant hair or a unicorn horn or any of the other crap that people say will happen when you give up gluten. Plus, gluten free living is stupid and it sucks. The red mask I have from my “maybe Lupus” kind of makes me a super hero though, right?
Hope you feel better soon!
I went through this for years, and was told at one point it didn’t matter if I had Lupus or RA, the treatment protocol to address my symptoms was the same. All the anti-inflamitories and steroids will kick your ass, and suppress your super human abilities, so get on a biologic. It’s been life altering. Literally, life altering. Then you can also claim shape shifting as your super power. Hang in there.
Sorry you’re going through this. Rest up. Rest is good. I was diagnosed with Lupus in 1991. In 2005, Mayo said, “Ehh, maybe Lupus.” In 2006, they started calling it “maybe Lupus or an undetermined autoimmune disorder”. Now, they’re back to just calling it Lupus. Apparently, for doctors, naming stuff is super hard. I just say that I have ‘my immune system is an asshole disorder’. That sums it up nicely. I should totally be the person that names diseases!
When I went to the clinic last winter because I couldn’t breathe, the nurse practitioner looked me in the eye and said, “I don’t mean to freak you out, but you might have a pulmonary embolism.” !!!!!!!!!!!
It was “just” double pneumonia, which is totally better but still … Operation Don’t Freak Diane Out: Failed
Have you considered a ketogenic diet? It got rid of my fibromyalgia!
I don’t see why you couldn’t be a werewolf and a vampire at the same time. But only if it seems fun. Maybe a vampire that needs chocolate instead of blood? That sounds like more fun.
I’ll tell you this much, anemia alone is enough to make you feel all sorts of horrible. So here’s hoping your doctors ultimately tell you to order up more steak and burgers and maybe pop an iron supplement and say “sorry about the whole ‘maybe lupus’ thing. Our bad.”
I spent two years thinking I had fibromyalgia. Turns out I really have a gluten allergy and thyroid issues. Between the two of them, it gave me the symptoms of fibro. That being said, if i hear someone say “if you stop eating gluten, you’ll feel so much better”, I’LL punch them in the vagina. It’s horrible to actually have a problem, but have people discount your issue because it’s also a fad diet.
So, I’m maybe really sorry. And maybe really scared that you’re maybe even sicker than we all thought. This maybe sucks. Also, should a doctor ever call and say “maybe” to a thing? That just doesn’t seem fair. Then again, maybe it is. Liability and whatnot. I don’t know.
All I know is that you’re going to be okay. Your doctors will figure this shit out and you’re head will start working properly again and then hopefully you’ll be able to tell us your exciting news (that you’ve found a way to breed unicorns and that you plan to set them free to roam wildly throughout the lands granting sparkly rainbow wishes, I assume) and then we’re all going to scream and freak out with joy and glee because yay!
Until then, I hope you feel better soon and that your doctors figure this stuff out.
Jenny, this made me cry. Saturday morning my mom called me and more-or-less told me I wasn’t gaining weight the way people in my family do and I should have my adrenal function checked out. I have a degree in biochemistry and spent some time trying to get into NP school, so I know she was saying “you look like you have Cushing’s Disease” which really means “you probably have a pituitary tumor.” It makes sense with my increased depression and anxiety lately, and it is totally treatable, but I’m really fucking scared until I hear something from someone with some blood results in their hand. Anyways, Cushing’s is totally treatable, and my SIL has had lupus since she was 16 and has been in remission for at least 3 years. We can all be totally normal, right? It is scary, but it is nice when we have words and treatments for our problems, right? I don’t know what happens if that isn’t what my problem is….I don’t know. I’m scared and upset I have to wait until tomorrow to see the doctor, and then some unknown amount of time for a real diagnosis. Let’s try, though.
I’m sorry u feel UGH- so do I. Your post made me feel better and I thank u for that. I’m glad u have support and thank u for always sharing your good and bad times.
Please don’t kick me in the vagina, but my rheumatologist discovered I have a severe inflammatory response to gluten. I have been eating whole wheat and whole grains my whole life. In effect, I’ve been poisoning myself. I don’t have almost lupus, but the lupus blood test came out to 220, but none of the individual tests (there were four of them) showed any indications of lupus. So I totally understand your dilemma.
I have never heard of a “maybe Lupus” diagnosis before. So when they discover that it isn’t Lupus you get to celebrate with a little wine maybe…anyway hang in there. You are not alone.
I have/had/might have a brain tumor for years. I finally had a neurosurgeon take out the mystery pest. Made me feel better to know that I was not imagining things. And now I can say “brain tumor!” when I do something stupid.
Small laugh to brighten your day (I hope). You and my teenage daughter must have a similar sense of humor. One day, after going for her yearly physical, she had texted a friend of hers that she had just gone to the doctor. The drama-queen, borderline hypochondriac friend asked “oh no, what’s wrong!” So to have a little fun, my daughter told her she had testicular cancer. The friend believed it, and was asking what that particular kind of cancer affected, all while sitting in her high school health class. She will never live it down.
I hope you and your maybe lupus feel much better soon. A lot of people are rooting for you.
I’m a shitty fan and haven’t kept up with your recent posts, so if I’m already suggesting something that you’ve looked into, just call me a twat waffle and carry on….BUT…..
Have you been tested for Lyme disease? The symptoms are INSANELY similar to Lupus, Chronic fatigue, fibromyalgia and a host of other chronic illnesses. If you haven’t (or, if you have and it came back negative), make sure to ask your doctor for a Western Blot blood test. It’s more reliable than a typical ELISA test that most places do. Also, get second, third and fourth opinions, if possible. If your insurance will cover it, the best lab in the country to do testing on tick-borne diseases is the IGenex Lab in California. They’ve got a website (and I think you can get tests directly from them).
Had it not been for my repeated requests and insistence that this wasn’t “normal” I would’ve never discovered the Lyme. It’s a long process (and much like Lupus, chronic Lyme has no cure), but remission is beautiful and worth the hell you have to go through to get there.
Good luck!!
So, a friend of mine had maybe lupus and maybe rheumatoid arthritis and after months and months of testing they finally figured out she has scleroderma. Just a thought.
If it makes you feel any better, one of our little old church biddies asked my husband (my HUSBAND!?!?) when I’m due. I’m not. It’s a non-cancerous tumor that I’m too scared to get removed. I named it Eustace. Eustace is an asshole. So’s the little old church lady. But I didn’t tell her that to her face, so I get bonus points. Or maybe a chocolate muffin or something.
I went through something similar two years ago. I was sick and it wasn’t the normal kind of sick my depression, anxiety, ADD, or PTSD had brought on. I saw a rheumatologist because my PCP (not the drug) noticed swelling in the knuckles on one of my hands and was like “I think you have lupus.” I watched a few episodes of House and WebMD’d the shit out of all sorts of lupus related issues and convinced myself I was going to die. But that was okay, because at the time I was also very suicidal but too scared to go through with it (well, I was more just worried who would take care of my cats), so I came to the conclusion that my body was trying to do the deed my mind wasn’t up for.
Anyway, lots of blood work later and the rheumatologist told me I had a bit of “everything” so he couldn’t diagnose me with anything because “surely you can’t have all these things.” But what if that was only true before I came into the mix? He essentially dismissed a potentially amazing medical discovery!
He said he could offer me some pills that originally were meant to treat malaria but apparently the malaria-stricken people who took the medication who also had lupus saw their lupus go down/away/wherever lupus goes when you don’t have it anymore. That must suck to have both malaria AND lupus. I didnt take the pills because they would have given me jaundice in 10 years or something unnecessary. I stopped taking Zoloft and magically the swelling in my knuckles went away, so it may have been medically-induced lupus but I’m still feeling the same sort of sick I felt two years ago. They won’t do more blood work on me, though, stating they’ve exhausted tests and I should eat some spinach or something. I have not taken them up on that advice.
I don’t want you to kick me because I adore you, but…I will share my immune system story with you. I was sick, like really, really sick for 3 years…difficulty breathing, skin rashes, stomach pain, bloating, aching joints, foggy brain, severe fatigue. I was diagnosed with maybe sarcoidosis and treated with steroids. The steroids moved my booty fat to my back and waist and filled me with rage, but did nothing for my illness. I switched meds, started visiting an acupuncturist and began to improve and get worse. Finally she sent me to NP who is very experienced with food allergies. I took her advice and started an elimination and rotation diet….never the same food in a 4 day period. Removing gluten for 4 days cleared my head and made my chest less heavy. I felt so much better after those initial gluten free days that I have avoided it for the last 5 years. It turns out that I have a number of food and environmental allergies that affect my quality of life. Dairy gives me sharp stomach pains, bloating and sore, stiff joints….especially my fingers. But my gluten free life is so much more comfortable. I have to avoid nuts, soy, rice, sunflower, dairy, gluten, celery, beef, pears, raspberries, cruciferous vegetables, any food high in nickel, egg whites, and stone fruits and surely I have left something out. It is rough, but I feel better and my breathing is better. Isn’t that the point? I hope you don’t have lupus. ❤Please don’t kick me.
I have lupus. It sucks. Can I give you a list of everyone who has told me I can be cured with essential oils, eliminating [insert food], or drinking a miraculous shake/smoothie/juice? Id like them to be kicked, too. I’m too tired to kick.
Well,I’m almost 70 and maybe one of your oldest readers. Everything hurts. I wake up in the morning and count my pains, and if it’s only five or six, it’s going to be a good day! Onward and upward!
BTW, I had a friend with for-sure-lupus who was treated for it for many years and then found out she didn’t actually have lupus. So there’s that. It’s one of those diseases that no one can seem to figure out.
Always here for you, Jenny! You, like us, are a survivor and you do have a super power…the ability to make us laugh(or cry…but mostly laugh) with you through this journey we are all on. That is an amazing gift and I for one am so thrilled you have chosen to share your experiences with us! You are AWESOME! 😸
I concur with ocularnervosa that lupus sounds like you might be turning into a mutant super-powered rabbit. Lepus, lupus: I’m dyslexic and never took Latin, so I’m pretty sure they’re basically the same thing. Plus, all the signs of your impending possible-vampirism… the only definitive medical conclusion: you’re becoming a vorpal bunny. I wish you well on your journey (and hope you don’t unintentionally kill any goats).
I wish doctors would quit practicing and to the job right the first time.
You need to–immediately–find these and buy them all. It will be a sure cure for “maybe Lupus.”
http://www.odditycentral.com/pics/lisa-blacks-steampunk-taxidermy.html
I’m pretty sure you just need to stay in and eat all the gluten.
That’s what I’m doing today because my fibro is acting up so I’m in too much pain to stand up and cook and also my bipolar is leaning toward depression so I don’t give a crud whether I eat anyway.
My doctor prescribed Netflix and Pizza so that’s what I’ve been living on for two days.
and by “my doctor” I mean I talked to my dog and asked if that was ok and he licked me which I think means “yes, do that, excellent notion”.
Love you girl! Keep on going!
Wow. Beautiful comments and beautiful post, Jenny. Gosh…those ups and downs of health and then new or changing diagnosis with chronic illness are such an emotional rollercoaster. Hugs to you and all your followers.
Jenny,
I think you are one of the most marvelous beings in the universe. Thank you for sharing your special genius with those of us who are broken and perhaps not dealing with it as well as you.
Clare
Auto Immune stuff is a giant bag of dicks. I’m sorry you’re going through this still… I went through auto immune “stuff” a few years ago. Long story short: please ask your rheum to see if they can piece it together and if it is UCTD. Undifferentiated Connective Tissue Disease. Not trying to armchair diagnose you, just throwing out a random possibility most rheums aren’t familiar with. I had to go to Johns Hopkins (after firing my previous rheum for telling me I had Juvenile RA, which…um…NO. Douche Monkey.) to get diagnosed. They had to do some super`ass FBI/CIA/detective work, but UCTD was the diagnosis. I had markers for Lupus/Vampire-ness and Scleroderma. No RA. But much, mucho, grande, inflammation of tissues from within. RA hellacious pain, but not actually RA, because other than the pain, symptoms weren’t there. And my blood said HELLS NO to RA. But, hells yes to 2 or more other autoimmune disease markers. Sending you all the good mojo and medicinal animal gifs out there! We are rooting for you!
My “maybe lupus” turned out to be a (quoting my doctor) “very particular type of small vessel vasculitis” which we then found out I am highly allergic (almost Steven Johnson syndrome) to the primary medication. I ended up in the burn unit for a weekend after two trips to the ER. And then a week on bed rest because my feet swelled up so bad. I also peeled from literally head to toe because it reacted like a sun burn. I am doing much better now. I still have some discoloration where it reacted and blistered last, and that was two months ago. Prayers for you Jenny and that it is vampirism instead.
You are not alone. As I walk my path it definitely helps to read about your adventures. If we couldn’t laugh about it we would cry and laughing is far more fun!!
I’m broken also. I nap a LOT. The rhuematologist and I are best buddies. They are scanning my liver next week at the big medical center so I can have a scan of my liver that is broken. Because of the meds I take to keep me healthy since I have RA. I will say, I said I would not give myself one more methotextrate shot… I’d had it. So they switched me to Otezla, off use, and my insurance won’t cover it, but the company that makes it took pity on me. It’s better for my liver (which was FINE before I got sick and all the meds ruined it). I like it, but maybe it’s just that it’s not a shot? Anyway, here is my happy BATH BOMBS FOR YOUR TOILET! https://twodifferentgirls.com/2016/06/20/bath-bomb-toilet-bowl-cleaner/
I had a doctor tell me he thought I had Bell’s Palsy because the lines in my forehead were only on one side. Trust me, they go all the way across.
Doctors are known to make mistakes, which isn’t exactly comforting, unless the mistake they make is diagnosing you as having maybe-lupus.
You just finished a tour. Your book has been on the bestseller list. And through it all, you’ve blogged three times a week. All of that’s gotta have some effect on your body. You’re doing the right thing, giving it a rest. Recharge them batteries. Take care of you.
I know if I push myself too hard, my body lets me know it, big time. “Don’t want to slow down? I’ll teach you.” I lived in bed for a year with the Epstein Barr virus after burning the candle at both ends. I have since learned to respect my body’s messages.
Maybe this is one of those kick-in-the-ass messages. Lay low for awhile, feed your mind and body with all kinds of goodies, and this, hopefully, too will pass.
I feel you, sister. My family refers to me as their AIDS baby. I often find myself wondering if my depression makes me super susceptible to certain illness or certain illness makes me super susceptible to depression…potato,potawto…hang in there. The blog was extremely helpful today due to the fact that i seem to be facing a new, long lasting effed up illness that noone can quite put their finger on despite my tests are coming back abnormal as well. Toodles
Lyme disease and/or all the other accompanying bacterial, viral, and parasitic infections that take up lodging when our immune system is damaged by stress, sugar and all the rest of the wonderful American diet, chemicals, pollution, mold. Welcome to the real zombie apocalypse. Docs misdiagnose Lyme et al all the time as Lupus, Fibro, Chronic Fatigue (which is a SYMPTOM of disease, not disease itself). I’m a survivor. Let me know if you would like more information. willcaro2@gmail.com
Lyme that’s gone undiagnosed for a long time can rear its ugly head as “maybe it’s everything in the world or maybe it’s something else”… Good luck, I’m sorry you’re hurting.
I have maybe fibromyalgia, which is even harder to diagnose than maybe lupus. But I still get long term depression and severe joint and muscle pain. So I feel your pain, literally. Good luck to us both. <3
You did a DNA test not long ago, right? You can upload your raw data into a database called Promethease ($5) and it will show you your health results. There are so many markers for autoimmune diseases, it can be very overwhelming. Maybe you could show your Doc the Promethease results for a clearer assessment?
I hope your lupus is maybe NOT. I feel broken lately too. fairly certain this is because I teach int he public schools, and our year is not over yet.
When I read “Super-Lupus” my brain changed it to “Oompa-Looma.” Weird, but you are way less orange, and taller. Thank you for your words. 💕
Jenny, I’m thinking about what you said and how you said it and how even when it’s just shitty you always make me laugh and I’m just grateful. Thanks for being so you even when your body is crapping out on you and thanks for putting your words and your heart and your seeing out into the world and not keeping it inside. The world is so much the better for your voice. I love you, I hope it’s not lupus and it’s something manageable instead that goes away.
Wow, I love you, have just stumbled across you, as it were. I’m sorry about all the crap you’re dealing with but congratulations and thank you for the wonderful erudite stream of consciousness, what Fresh and funny. xx
All your mess sounds eerily similar to what my boss has… Chronic Lyme Disease. And the more I read about it the more I am convinced a) it is the root of all evil, and b) ticks will bring about the zombie apocalypse.
Eat all the gluten so that I can live vicariously!
Bodies are weird, and some are weirder than others. I got mutant super powers, cos that’s how I translate the un-named “genetic endocrine disorder” that my endocrinologist says I have. Now I just need to figure out the sparkly side of it. Not letting the wacko body define me has been my fave approach so far – along with not letting it ‘win’.
I’m going through this exact same thing. It helps to hear I’m not alone, and to be reminded that a sense of humor really does help! It’s just so hard to explain to people- why I’m suddenly different than I used to be. I literally laughed out loud when the doctor told me that the tests he did to “prove that nothing was wrong with me” came back positive. I think he thinks I’m a little crazy. Multiple doctors have been trying to convince me that this is “all in my head.” But I knew something was wrong, even if they didn’t believe it. Besides, it appears that arthritis and “possible lupus” are pretty trendy. It’s good to be in with the “in crowd.” Right?? Hugs to you, Ms . Blogess.
I was diagnosed with a Lupus like disease called Sarcoid in 2001,they actually thought it might be Lupus and then it was caused by a medication I took for a fast heart beats. I had my heart fixed, stop taking the medication and the Sarcoid went into remission. If it’s medication caused it’s easier to get rid of. Hang in there, it’s not the end yet, you’re still alive and I’m happy about that. 😆
I am the comment above….. I didn’t mean for it to be anonymous. I think I’m very tired….
You are most definitely not alone. My husband has back problems and all the tests and things to start doing or stop doing haven’t been helpful information and it’s frustrating. Because when we discovered penicillin, it seemed like science had figured all this shit out, but it turns out we probably still don’t know how most things actually work. Hopefully we can do well enough with educated guesses and love.
Hope it’s not that “L” word
Love raccoons
You’re not alone
Vampire or wolf, pretty cool
Love your blog
I think “maybe lupus” = “almost pregnant” so there’s nothing to worry about. About gluten–I took the test for Celiac disease and it came back negative. I was relieved until the doc said “Bu that doesn’t mean you don’t have it.” Um, excuse me but, um, WTF? Also health care professionals who make statements like that should be told they might almost probably possibly for certain be fired.
Hang in there Jenny. We are all rooting for you! ❤️ Root, root. See? I told ya. Root, root, root. 🐔
I’m 100% sure you’re aware of this because they’re so awesome and so are you but just in case not…this is good
http://fxckfeelings.com/2016/03/31/5-better-goals-for-controlling-your-illness/
Thank you so much for sharing. I feel weak sometimes and am frail, a lot of times, and you are a hero of mine.If you hide in the bathroom or shine out of a panel conversation, or both at once, you are you, a person I conjure when it gets difficult.
I heard somewhere (possibly from the voices in my head) that “maybe lupus” can be cured by eating edible cupcake wrappers filled with edible cupcakes. Quick, to Europe for some munchies!!!
Note that if the edible cupcake wrappers – which are gluten free – are filled with edible cupcakes – which obviously have gluten in them – then I did not NOT just suggest that you eat something gluten free! In other words, Please don’t kick me in the vagina. Except that now those of you that I just made mad by disparaging gluten free cupcakes are going to kick me in the vagina. I am going to have a difficult explaining a funny walk and some bruising this week.
I believe you are glue. You hold yourself together. You hold us together with hope and laughter. Please have them docs ee if your super power is being glue girl. Or woman. And check your birth certificate and see if your real name is Elmer. Thanks for the bad and the good Elmer. Uh, Jenny.
I believe you are glue. You hold yourself together. You hold us together with hope and laughter. Please have the docs check and see if your super power is being glue girl. Or woman. And check your birth certificate and see if your real name is Elmer. Thanks for the bad and the goodgood, Elmer. Uh, Jenny.
How do you edit this shit????
“. Tell me I just need to get out more and stop eating gluten and I will kick you in the vagina. And if you don’t have one I will make one. From all the kicking.”
I thank you for this important public service announcement
GOOOOOO TEAM JACOB! ! Vampires? Werewolves? Welcome to the super cool club!
We would like to make you our Queen 😉
“Ad rivum eundem lupus et agnus venerant, siti compulsi. Superior stabat lupus, longeque inferior agnus.” I had to learn this latin shit by heart at school. I totally forgot, today I copied and glued it since i barely remember the name of the school I attended. I just wonder; how can someone from the hospital call you and say “maybe it is this or that or not”. I may consider answering “maybe go fuck yourself, or not”, or “maybe I’ll come and kill you while you sleep, or not”.
Interesting: you’re so accustomed to live with pain, that the more pain you have, the more strength you deliver to others. The final balance is clearly uneven. For 100 units of pain you suffer, you transmit to the environment 1000 units of smiles and hope. Math doesn’t help. Anyway, I do not believe you realize how humanly outstanding you are, and how many people seem enormously miserable and mean and grey compared to you. Including myself. Thank you for your energy, I am still gray but I am OK with that.
Love,
Stefano
Twenty years ago, I got a “maybe lupus” diagnosis and went through tons of tests and still only had a “maybe lupus” diagnosis. I’m excited about the good news you will share.
I also have maybe-Lupus, or maybe-Hashimoto’s, or maybe-a-lot-of-other-things-the-docs-aren’t-sure-let-us-run-some-tests, but I have the surely incorrect idea that maybe if I don’t let them find out what it is that maybe nothing is wrong… But I just watched Finding Dory, and I was reminded again to “Just Keep Swimming” so that’s what I’m going to do.
I have to say I have lupus (very much like a vampire with the sleep and the sun kills me) but it’s nothing compared to the ALSO RA and fibromyalgia. Which includes headaches and pain daily with a side of IBS to keep me on my toes. Depression and anxiety come with the complete package. So as long as your not in too much pain and can do things you want some of the time your already ahead. You problaly are already on lupus drugs since they are basically the same as the ones for RA so who cares, lupus just hangs around and gives me grief once in a blue moon, hasn’t tried to kill me and I am going on 15 years with all this fuckerduckery.
Oh yeah, I am also A celiac (no gluten) and have no thyroid from surgery for cancer and still not dead!
Thank you for the reminder that’s we are not alone with our autoimmune/ chronic illnesses. Today I’m feeling pretty well, so I’ll celebrate. Also I’m going to read h out to a friend who is feeling pretty Shit right now with fibromyalgia.
Hey, check into adrenal insufficiency. One of the main symptoms is daytime sleepiness and then you wake up in the evening and feel pretty good! So there’s your vampire thing. Also incredible fatigue and brain fog. One of the precipitating causes can be constant, never ending stress. Now who doesn’t have that in their life??
I have lupus. Maybe. Definitely. It took 12 years to diagnose properly, but sometimes Drs, especially new ones, change their minds. Then they rediagnose it, which is a whole lot of money and tests for nothing. Everyone I know with lupus goes through the same. it’s very difficult to diagnose… it can attack any system in the body, so everyone gets it differently, so it’s hard to understand. Many Drs just have no idea about it. It also changes every day, so when you go to the dr and your bloods are fine because all the meds they put you on are working for a change, they decide you don’t have it and start retesting. Also your bloods can be fine when you’re in a full blown flare. Mine attacks my joints, lungs, heart, muscles, CNS and brain, eyes, stomach and blood vessels. Yay! Seriously, lupus sucks balls, there’s no way to sugar coat it, but you’re already used to living with chronic illness, so you’re over the main hurdle. Otherwise, it’s not the death sentence it used to be. I, and many others I know, live wonderful, rich lives despite sucky lupus. Maybe lupus is not great news, but life is still good. There’s plenty of us lupies out here with lots of compassion, advice, and “hell yeah”s when you just want to shout “fuck off lupus”. Good luck, but know life is still great either way. xo
I completely understand what you are going through. It took years for various doctors to diagnose me with Lupus. I also have psoriatic arthritis. Sadly I don’t have any super powers though I wish I did. I hope they find the source of what is making you not feel well. I hope it’s not lupus but if it is, there are plenty of us out here to help support you. You have helped me by giving me the laughter that I had list in my life. I will happily support you with whatever you need with compassion, empathy and love. Jennifer
I was maybe lupus for years because of reasons, plus weird antinuclear antibody results. Sometimes it was fine, others not. I already knew about ARGH! my body hates me because of more reasons. Here is the tricky bit where I try not to freak you out: If one of your doctor people considers doing a brain MRI, let them. My neurologist explained that my maybe lupus of 13 years was a common oddity, indicative of allergic response, in people with MS. DONT FREAK OUT! We may not have the same oddity. But I definitely have MS.
After 34 yrs of being relatively healthy (besides headaches almost everyday for 2 yrs prior)last year my body decided to say fuck you lady and one day I started puking and having severe abdominal pain. So, a year later and still headaches and about 6 things I can eat that don’t make me puke, and Drs saying hmm I don’t know and looking at me like yeah ok crazy lady that just doesn’t want to eat, I feel your frustration, along with depression and insomnia and exhaustion. Your spoons thing was dead-on, its exactly like that for me and so many other things you said about wanting to do stuff(especially w/ your daughter) but just not being able to. Your books are the only ones that have ever made me laugh out loud, I can totally understand having a cat rodeo,(as I was laughing out loud reading it at 2 am I was thinking holy shit that sounds like something I would do at 2 am) I hope you have definitely not lupus but hope you get maybe answers someday. I hope I get some. And along with kicking the gluten ppl in the vagina, let’s also punch them in the throat and tell them to eat gluten (and some dairy just for kicks), and die.(instead of eat shit and die b/c to them it’s worse.)Yay!! I hope you keep the strength to keep doing what you’re doing, it helps so many people. Looking forward to hearing your good news:)
Jenny – you make me laugh so much and I save my reading of you for when I’m having a particularly crap day, so I guess you are my medication. Huh! Add that to your list of superpowers. I own the fridge magnet you can see in this “url” and it makes me laugh every time I look at it. I have it stuck on the wall behind my computer so whenever someone pisses me off in work I just smile at them through gritted teeth then glance at the wall and feel better. I know you’re a busy girl but I hope you get the chance to take a look – I think you will enjoy the ‘far-from-pc’ sentiment.
https://www.deanmorriscards.co.uk/you-would-not-believe-funny-fridge-magnet-1324.html?zenid=5a94duudpgkb56jb8av04lkcn0
I just spent the last ten minutes laughing my arse off at all the other magnets on the site. Well now I know what the entire family are getting for Christmas. Fuck me! Christmas sorted in June. Now that’s what I call a result.
I was born with lupus. Seizures as a kid but no reason why because I’m old and in those days they didn’t have the right tests. Yep — weird disease. Busy disheveling you one day – next day? Nothin’!!!! Pain? Let me rub it– gone — no wait–it just moved over a 1/4 inch. Anyway you CAN live very well with it! The sun is the enemy! So always — all year on exposed places, wear 30 wgt oil—by that I mean sunblock. (Hawaiian Tropics is still my favorite – affordable & skin softening). The plus side is I’m almost 70 & people say I look 55—which isnt as good as getting carded on your 40th birthday, but it comes real close. My mind still thinks I’m 34, so it’s something in my head. Any way — Plaquinel worked to control the symptoms, or lack there of. And menopause puts you in over the top. No longer have to take quinine after 25 yrs of taking it. BTW—I survived breast cancer even while surviving lupus.
And that’s why I say, “Thank You, Monkeys!” They are always getting Almost Lupus and Almost Constipation and Almost Death so the medicines and bandages I get only have a few vampire-y side effects and don’t hurt when I rip them off.. .
Jenny, I will drink a glass/bottle in your honor. 🙂
You’re not Spiderman – that name is taken and trademarked and you don’t want to have anything in common with spiders anyway.
Maybe you have a haunted leg! How cool would that be?
(I will not tell you to spend more time outside because that’s where the sun and all the people are, and I can’t recommend either at this time.)
I’ve had the “maybe lupus” diagnosis myself, and the dr. said it all casual, and then he was very confused when I cried and cried. Then it was “probably not lupus,” but also “we don’t know what that is, but it is definitely something.” The raccoon is very helpful!
Read this blog last night and saw this article this morning. Coincidence? I don’t think so! Maybe this article about a possible link between autoimmune disorders and depression will be something to share with your doctors. http://www.theatlantic.com/magazine/archive/2016/07/when-the-body-attacks-the-mind/485564/
Mixed Connective Tissue Disease (MCTD) is my “current” and “most likely” diagnosis based on the current blood work and symptoms. Lucky me! I get to have the symptoms of the various autoimmune diseases on a rotating schedule without actually having them at the moment, but I might later. Spin the wheel to see what autoimmune disease symptoms I have today! Is it Lupus? Nope. Is it stopping on RA? Almost, but nope. Today the arrow lands on you figure it out. It’s right next to exercise more, mind over matter, essential oils, no glutten, you’re depressed, meditation, vitamins, and supplements. My favorite is the “it’s all in your head” answer because that one is the answer to everything. If only I could control my head. I almost forgot another favorite: you don’t look sick.
Do I sound cranky or like I don’t feel well? Sorry, excuse me a few minutes while I exercise, work on my mind, inhale my oils, spit out my bagle, stop being depressed, meditate, and take my vitamins and supplemebts. Ahhhh, I feel so much better now that I’m cured.
Did I mention that my son suffers from chronic depression? But, no, that makes no sense! Look at him. What does he have to be depressed about?
From one Texan to another, may I suggest eating more tacos? Worst case scenario, you have lupus and tacos, which is certainly better than lupus without tacos.
Sending love, light and guacamole! (metaphorical guacamole)
Just say fuck It and have a wine slushie! It’s after 5 somewhere. Right?
Seriously though, I hope you’ll be okay.
Ugh the “maybe” diagnosis is the absolute worst. My dad has had a lot of maybes and all of them have proven to be wrong. He still doesn’t know what he has, but at least he knows what he doesn’t have I suppose.
So let’s just pretend like they said “maybe vampire” because that would be cool plus you’d be immortal!
Sending you good thoughts! I totally feel you, though. After my last woman check, they called and said the results were not good and want to retest- in 6 months. The last time doctors took their time in testing, the cancer in my thyroid spread and almost cut off my air way. Plus I’m paranoid, so every time I get a stomach cramp I’m like, “It’s cancer, I’m dying.” I’m not a patient patient. But if it does turn out that there’s something wrong, I know I can’t afford to do anything about it, even with my insurance, so I’m not sure if it’s better to know or not.
<3 Thanks for sharing all of this. We’re here for you.
HUGS!!!!!!
As a child, I had “maybe-leukemia” and went through dozens of tests because I was always covered in bruises. When the tests came back negative, I then had “maybe-abuse” and after a short investigation, the doctors finally figured out I was “definitely-clumsy.” Oops!
We love you, and I’m glad you’re here. It’s my wedding anniversary today, so I’m ignoring my currently-unknown “maybe xyz” physical health concern, and enjoying some love with my wife. <3 Have a happy day, and don’t try to pet any actual raccoons. They’re trouble.
Sending happy thoughts to you to start feeling better! Our fun ladies monthly book club picked “Let’s Pretend This Never Happened” for this month. I am super excited to attend because I’m pretty sure that your book + wine = an amazing Wednesday night out without the kids. 🙂
Can I just say, on a personal note, thank you for kicking the gluten haters in the vagina. While you are kicking vaginas, can you also add the people selling supplements thru mlms and those who preach the good word of coconut oil to your vagina kicking list? This common citizen would appreciate it;)
“I’ve been alive all of my life and statistically that’s the way that immortality begins.” A testament to positive thinking. This whole post is so well written. Your life is so extraordinary, even (maybe especially) the off-center parts.
I think it’s pretty obvious what’s happening here, and I wish you would just admit it.
There are clearly two worlds: this one, the one where we exist right now, and another one, one that we call “dreams,” but actually exists and is fueled by particles of energy and imagination. Like What Dreams May Come, but without the suicide and death-y bits. But that world is in turmoil. The violence and destruction going on around our globe has begun to seep into their realm, causing chaos and fear at what appears to them to be a culture disintegrating without cause or logic. So they’ve begun a search. A very important search to find the one person who can shift the energy of their realm and help them restore order and faith.
You’ve been called, Jenny. They need your help. They need you to sleep, to enter their realm so you can offer guidance. Like the Green Lantern, but without the weird ring. Although, rings can be fun, so whatever makes you happy.
Go, Super-Lupus. Restore order where once was chaos. Bring right and balance back to their world. Sleep, and in so doing, be the hero they need.
I love this post! Yes, this “maybe lupus” epidemic is a bit too extreme. Just bc you have antibodies doesn’t mean anything. I know urgent care doctors were diagnosing kids w “maybe lupus” all bc of a “butterfly rash”. 🙄 I agree – if you wake up feeling good and rested …enjoy it! xoxo
That racoon gif is literally everything this afternoon. Is it wrong that I want a pet raccoon to paw me with their tiny hands and cuddle on the couch with me? If it’s wrong, then boy howdy, I don’t want to be right…
Has it occurred to you that you might be Deadpool?
I had various/continuous “issues” for 58 years, often told it was “Chronic Fatigue Syndrome” (now called fibromyalgia) or often “just” depression. When docs don’t know what you have they tend to throw a lot of medicine down your throat and eventually I was on over 20 medications at the same time. Things got really bad, like I’m moving in with my kids bad, until one neurologist said, “I don’t know what you have, but I know you don’t need all these meds,” and cut that list. Eventually I was diagnosed with Ehlers Danlos Syndrome(EDS) and a lot of complications from it, which is a genetic condition, which means I’ve had this all my life and my father and his mother both died young from it. No cure, sure, but you can’t imagine how good it feels to put a name to it. AND-once they know what you have they stop giving you shit that just makes you worse and start doing shit that makes you feel better. I went through a ton of tests (well, maybe 500 lbs.) but it was worth it. So, are you really flexible? That’s the first question for EDS. And even though I showed every doctor I saw how I could put my hands flat on the floor without bending my knees, not one ever mentioned EDS; a physical therapist picked it up. So rest, but get tests. Naming the beast gives you power over it.
Many years ago, I worked in lupus research. The rheumatologist I worked with had a theory that lupus patients were smarter and the lupus was the trade off.
Not scientifically proven but, there’s that.
You think maybe-Lupus is bad, try some of the meds prescribed for it. Those things will really kill you. I stick with shows on the comedy channel. I figure it’s way better to die laughing.
Thank you. Thank you for always making me smile with your posts. Even when your post is not of such great news, you still find a way to make others smile. THAT’S YOUR SUPERHUMAN POWER!!! I hope that power works on you as well. Wishing you many smiles. Xoxo.
I have maybe lupus too! It was rheumatoid arthritis for the longest time and has graduated. Yay! Not really. Feel ya sister! Love your blog. Thanks for making me laugh even when it seems like there’s nothing to laugh about.
I had maybe Lupus while on Lupron for endometriosis. It went away and now I just have unspecified-obnoxious-body. I also got anticardiolipid antibody syndrome from it, which I’m pretty sure means that I’m not supposed to exercise because it has “anti” and “cardio” in the name. So some diseases are blessings in disguise.
OMG you are like a human Mobius strip. Which is a weird complicated math thing, so if that’s you and you are the only human Mobius strip, YOU WIN MATH. And that’s almost as hard as winning life! But better, because anyone can be alive, not many people are good at math. But maybe I’m wrong and it’s the vodka talking. Because life is hard, and vodka helps. I hope you have vodka. Love to you!!
I am a colon cancer survivor and some years after I was declared cancer free I was having an ultrasound for an unrelated issue and the doctor saw a lump.He said “Your cancer is back.” After 6 years of hell involving more pain and procedures than I could enumerate, I had been declared cancer-free. The news that it was not gone was not acceptable. I started planning my suicide. I wanted to make sure that this was one of the few endeavors that I did not fail at in my life. I had 3 preferred methods and was assessing them when I happened to have a prescheduled appointment with my urologist. I told him what the doctor said and he told me the doctor was out of line and could not diagnose cancer with an ultrasound – news to me. He scheduled a CT scan within a week and called me the results within two days – the lump was a normal group of cells that occurred regularly in people over 50. I shelved my suicide plans and have lived happily ever after. Jenny, some doctors are complete assholes – Tell them to fuck off with the lupus and bend some brain cells to find out what the real problem is.
I, too, have an irrational amount of pain and other “mysterious” symptoms. I cannot sleep when I am supposed to be sleeping, walk from the couch to the bathroom without limping, lift a gallon of milk without grimacing, turn my head quickly or slowly or hold it completely still without it hurting…you get the idea. You’re not alone, friend. We aren’t crazy or broken or whatever…although I like the idea of “vampirism” better than fucked up Fibromyalgia. Anyways, I love you and your family and your posts and pics. I love your sense of humor and your wit and charm and choice of words others might call “naughty”. I love the way you get a half empty glass and call it what it is…then make a joke. We’re in this together, Jenny. Hang in there.
Ohh Darling… I feel ya… At the moment in a similar boat with one, two or three neurological issues… and is this med making one better and one worse and what about the other one? Um, yep could be from the meds could be from yet undiagnosed issue so let’s switch meds and uh by the way now you also have a metabolic issue too, yep maybe from the side effects from the original med.
Anyway… Thanks and thanks and thanks for writing and blogging and posting cute pics and sharing and being you. It all means a lot to me and my beloveds!
Thank you for doing your best to look after yourself, hold on everyday because you are so important. Hearts and squishes
So may people love you, even if your lupus or whatever killed you, our love would keep you alive eternally because none of us could imagine a day without you. Which, I guess would technically make you a vampire, so either way, it looks like vampirism (is that a word?) might be in the cards for you. Hang in there, and know that, even sick, you are funnier than anyone else.
Jenny I’m so sorry you haven’t been feeling well and dealing with frustrating medical news. Here’s something to cheer you up…I started following pumpkintheracoon on Instagram. Adorable and hilarious. Very cute pics of very cute Racoon doing very cute things! Check it out 🙂 Hugs to you!
PLEASE make sure your thyroid is checked. That booger controls SO much! Proper meds for a non-functioning thyroid saved a loved one’s life. And it can CAUSE depression!
big squishy hugs Nurse here, and this is pretty much the life of any woman with an autoimmune disease. Could be…maybe…of course there is also…and then the drugs could also…we’re not completely sure…no definitive test…maybe…we could try…
I hope you told that doctor to go fuck him- or herself.
Ah we are sisters in spirit – I am in the same but different position. So tired for 5 weeks, sick for 3, off work for 1, 2 doctor appointments, and another tomorrow with MY theory…..It is so frustrating being unwell – you are right and yes health is so under rated – I don’t fight RA like you though so I am blessed. Much love xx
I have Lupus and it is a superpower because I refuse to let it keep me from doing the stuff I want ( unless my body won’t). I have depression and anxiety which go hand in hand with the old wolf but each time I do something, anything, it’s an “I have just pissed on your tree and marked my turf” moment!
Man, that raccoon really LOVES that cat! We all need to be loved that hard!!
I know you don’t want to look at diet as a possible answer (I will not mention the G-word because I do not want to get kicked), but I stopped all but one med, after being on “The Virgin Diet” for only a couple weeks. I will say, I didn’t have “almost lupus” or anything almost-serious, just lots of stuff that seems to come with age. And I know, “virgin diet” is a joke waiting to happen! Just think, if you actually tried it and liked it, you could write jokes about being a “super-virgin” or “maybe-virgin”. But, it changed my life!! And no, I do not know the author, or anything like that. I just want you to feel better!! Sending all good wishes to you!
I’ve had “maybe lupus” for 4 years now. At least they took “maybe scleroderma” off my list (I was terrified of that one!). Every visit to the rheumatologist looks more like real SLE and less like “maybe lupus” but it would be nice to have a real diagnosis. I really hope that they figure out which medications work the best for you, it is so hard to balance all the various side-effects for each thing you treat… But thank you for being you and letting me know I’m not alone, either!
I totally hear you! You are not alone! I spent 6 weeks in a coma after a serious car accident and I survived a traumatic brain injury and I have a have a unuque neurological condition in which I have symptoms similiar to fibromyalgia and multiple sclerosis, but I don’t have either of those conditions. For years I stuck with the “Maybe MS” tag line for a loong time because no one seems to understand what a traumatic brain injury is. MS was finally ruled out with a brain scan, now if I visit my doctor with an issue the diagnosis is always “well you DID have a brain injury several years ago, thats probably why you’re having this problem” It is very frustrating to be told that!
Keep smiling Jenny!
I have RA too. Sero-negative so I call it my “maybe RA”.
Maybe you have heard this recommended before, but I’ll put it out there. Maybe look for an amazing acupuncturist/Chinese med doctor.? For all the weird stuff I have experienced where Western doctors and meds were no help, acupuncture brought me so much relief.
We need to get out there and FIND ALL THE GLUTEN. I mean, if people aren’t eating it, aren’t there these huge, growing gluten reserves just, I don’t know, GROWING? Maybe I should make more cake. Just for safety.
I don’t know what else to say except big big hug and I think you’re absolutely amazing.
When I got to the part about enjoying the day because it’s a goddamned gift, I recalled this other post I just read. https://sneezingcow.com/2016/06/22/the-gratitude-essay/
Absolutely no advice from me. Hug your [fill in the blank] and I hope you feel better soon. Poor health sucks rocks.
Why don’t my posts register?
Love you. We are holding you softly in our arms so that you can sleep at night (but not in an offensive way – we know that Victor is yours – so maybe we are just holding the parts of you that are misbehaving so that we can make them sleep when you want to sleep.
)
[Left out of previous post.] Not a sentence, I know.
My blood work Anti-bodies are the same way. Mine is being induced “possibly” by a medication I’ve taken for 13 years for high blood pressure. If I stop taking it, the symptoms, “might” go away in weeks to months. My blood pressure goes up within a day when I do. We proved that yesterday. {sigh} My labwork is all over the place too as it shows Sjögrens and Lupus and they aren’t sure what else. That’s why years ago they said “Undifferentiated Connective Tissue Disorder”. Like WTF does that even mean?!??!!! They still use it now. I have an appt. on Aug. 11 to discuss it.
You should probably eat twice as much gluten because I have celiac disease and can’t eat any gluten, so you need to eat enough for both of us. I hope you have something less bad than maybe lupus. I have the beginning stages of thyroid problems but not enough for meds yet so they’re just letting me be excited. My doctor told me at my last appointment that it’s not normal for a 24 year old to be so exhausted all the time and need a two+ hour nap every afternoon, like I didn’t already know that!
Me: What’s wrong, doctor?
Doctor: You’re not normal.
Me: Okay, but I already knew that.
I have too many friends and loved ones dealing with “maybe____” which basically means “we have no fucking clue so we will just keep throwing shit at you and see what sticks.” Fucking infuriating. I strongly recommend a multi-gluten diet with wode range, such as chocolate chip cookies, pasta, and donuts. And make sure you throw in some wine. You know, balance and all that.
So now you have Impending Vampirism and Possible Lycanthropy. Does that mean you can be hillariously furry as well as furiously happy?
Thank you so much for making me laugh at RA (and other stuff, too). I should share my Paul Bunyan theory with you sometime. It involves giant vampires and giant werewolves (what else is a giant blue ox going to fight), but doesn’t include zombies because that would be too silly.
I have definitely for sure MS, and I have to get an infusion of Tysabri tomorrow so naturally I’m wide awake and not at all sleepy because a)I am sick again and I’m afraid they’ll kick me out of the clinic like last time b)I’m afraid I’m going to get a fatal brain infection disease and d)I can’t make proper lists anymore. I don’t ever complain but sometimes it really blows and I am tired of this shitty fucking disease. I hope you can un-get Lupus by stopping some of your meds. Good luck!
Yeah, I know what it’s like to get “maybe”s from doctors. On the one hand, like you said, proof that it’s not all in your head! But on the other…if it doesn’t come with a way to feel better, what was the point (other than, I guess, letting you know it’s not something worse)? Good luck!
Just because I want to see if your foot can even reach my vagina…Maybe you should get out more and stop eating gluten/go vegan/cut out all dairy/yadda yadda yadda!!!
Let’s see whatcha got, Girl! Curiosity might kill my lady parts.
I have an incurable neurological disorder, and while I’m sorry for how poorly you’ve been feeling, I can’t tell you how much a post like this means to me. This is precisely how the past two years of hell have been for me, and it means so much to see it put in words. Thank you so much for this, and I hope you start feeling better soon.
I was diagnosed with Lupus last April and sent to a rheumatologist. He said I don’t have Lupus and “You don’t want Lupus” Really, Fucker? I thought everybody wanted Lupus. Medicine sucks. Sometimes. Stay strong my friend.
I am a maybe lupus too. And I have fibromyalgia and a migraine disorder that gives me constant vertigo. I had maybe MS for a brief moment there and that put me in a tizzy! I am surprised in reading the comments how many of us there are! It stresses me out like crazy and I am counting down the years until I am the age when my grandmother got lupus and hoping so badly it stays “maybe lupus” and not full blown lupus. My rheum says he doesn’t give the diagnosis unless there is organ involvement. Hoping yours is a definite maybe and will go away for good.
Don’t worry. It’s NEVER Lupus. – Dr. Gregory House, M.D.
Seriously, I did not see an update on this – hope you’re fine.
Hi, I’m ANA + and dsDNA ab + with all kinds of symptoms of autoimmunity, a red rashy face, diagnosed with dry eye syndrome by my ophthalmologist, and two rheumies failed to diagnose me with anything. Most will happily do nothing before doing something that might be a mistake. That’s just how they roll. I’m trying to get a diagnosis for well over two years now. Good luck!
I have Lupus and it is a superpower since I won’t allow it to hold me back from doing the stuff I need I have discouragement and uneasiness which remain closely connected with the old wolf however each time I follow through with something, anything, it’s an “I have recently pissed on your tree and denoted my turf” second!
https://www.mid-day.com/brand-media/article/sonofit-reviews-update-warning-real-ear-drops-for-hearing-loss-read-ear-23280373
Ugh! Other diseases that are caused by medicine are the worst! Hey, this will make you better while simultaneously making you sicker; good luck! Sorry you’re amidst this, yet happy you’re made a beeline for certain responses!