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Lupus Squared (mini update)

CLove's picture

Its now SD16 SMPS week with us.

She used her little girl voice as she always does when just back from her mother Toxic Trolls visitation. My bad, I wanted to say hello, how are you...just to set the tone for the week as a positive one.

She told me labout school (unasked) "uh huh" was my response. "hmmmmm. Cool." Im not going to waste time typing out all the details. Just not interested.


 "my sister has lupus and only 10 years to live because they didnt catch it in time. My mom wants me to get tested, and I do too so we can catch it in time. But dad doesnt want me to hes really against it."

Foolish foolish me, I asked her if she had any symptoms. Angry impatient snotty mcpoutersulk voice comes on. "I just want to get tested so can catch it in time".

I asked her how she felt about her sister, assuming there were complex emotions. Repeated sentence in repeated tone. 

Me, figuring this would be my easy out "hugs, Im sure this is stressful, I wish you the best..." and thats the end of THAT conversation.

But of course my mind is spinning. How can a doctor say for sure with lupus "exactly 10 more years to live". I get sucked back into "is this real or is it lies". "are we going to see the lupus kid on our doorstep, because how am I going to effectively turn away a 'terminal lupus case skid with limited time on this earth'?" 

The "what next" anxiety we all discuss here is heavy. Husband doesnt think she has lupus, and doesnt want to talk about it. I realized on my drive to work, thats my best strategy - just dont talk with him about it or ask questions. Keep it light and breezy, and just prepare myself for whatever comes along. Like ex Julie sais - get the financial ducks in a row for becoming independent. 


JRI's picture

I am ignorant about this topic but I never knew lupus was terminal?  I'd stay disengaged and your responses were perfect.  What will be, will be.

caninelover's picture

Have a friend who's lived with it for years.  Still generally active enough.  The whole story is more SK bs, in my opinion.

Merry's picture

Lupus is not usually fatal. Can be if untreated. sounds like you have a whole bucket of drama there.

disengage disengage disengage. Repeat. 

CLove's picture

From migrains, to anxiety, to heart murmurs, to back issues, to head traumas, and now to lupus. Thats how the enmeshment unfolds. Toxic Troll Momma has it, so do her lil babies. Feral Forger has it so, now SMPS has it, cause genetics. Gives them something to worry about, gives them something to bond over. Except the sisters arent friendly at all right now. Younger doesnt really care about older except in the context of what it means for her.

On and on it goes. Whos next no body knows.

AlmostGone834's picture

Well... a quick Google search reveals from Web MD:

"In most cases, lupus is not fatal. In fact, 80% to 90% of people who have this autoimmune disease will likely live a normal life span. Still, some people do die from the disease, in which your immune systemattacks your body's organs and tissues."

And further 

Why Do Some People Die From Lupus?

"Lupus symptoms can vary widely from mild to moderate to really bad. The cases with frequent serious flare-ups are the cases doctors find hardest to treat. They’re also the ones most likely to shorten life span. 

Still, it’s important to note that most people with lupus rarely have a flare-up serious enough to require hospitalization."

What category does FF fall into? Is she really a serious case with frequent trips to the hospital? And if so, it doesn't exactly say HOW MUCH their lives are shortened by. 10 years seems extreme to me and in any event, you certainly CAN say no to her moving in. If she is that seriously I'll, she will likely need to go into hospice care in a few years anyway.


CLove's picture

I dont even know how this whole thing started. Shes no contact with me, and I dont get to hear things...

Ispofacto's picture


I detest people who use their fake health issues to manipulate.  Disgusting.


caninelover's picture

The classic teenage/young adult disease - to get out of adulting.  Annoying.  

AlmostGone834's picture

Also wanted to throw this out there (that I came across while reading):

"A common misperception about life expectancy

Some confusion about lupus life expectancy relates to the way research is communicated. 

Research that shows 80-90% of people with lupus live for more than 10 years is often misinterpreted as giving people with lupus only 10 years to live. It is important to understand that the "10 years" used in this context does not represent the number of years the person lived after their diagnosis, but rather the number of years involved in the study. "

CLove's picture

Ill have to throw that out if it comes up, but Im just going to avoid avoid avoid. Ive my tooth issues and they can freak out all they want.

AlmostGone834's picture

Yes definitely, but for your own peace of mind FF is likely not dying so don't feel guilted into letting her into your home. If she shows up on your doorstep one day and tries to weasel her way in under the guise of dying simply reassure her that only the good die young and slam the door in her face.

caninelover's picture

Mark your calendar for 10 years and you can tell DH, oh guess their still alive LOL.

justmakingthebest's picture

Google also said:

No one test can diagnose lupus. The combination of blood and urine tests, signs and symptoms, and physical examination findings leads to the diagnosis.

So without any signs or symptoms, I seriously doubt she would "test" positive. But if it is that big of a deal to her, she should get tested. I'm sure that BM and her sister are all up in her head and she doesn't need it. Just get it ruled out and let her move on with her life.

I also seriously doubt there is 10 years left for her sister. Maybe more like in the next 10 years your symptoms may increase and you will have more flare ups. 

CLove's picture

Thats what Ive read also. Its not a one test thing, its a combo-shot of different tests and symptoms.

Easy to fake your way through if your at all clever and dedicated.

JRI's picture

I'm sure many people legitimately suffer from lupus.

But for a scammer, like your FF or my SD61, it sounds like the perfect pity disease.  Vague symptoms, intermittent flare ups, no diagnostic test.  I just hope SD61 doesn't catch on to this.

Ispofacto's picture

Play dumb.  You don't know anything about Lupus.  Ask her how she got diagnosed, what doctor she used, when Buttmunch is getting tested, what kind of meds she is gonna need.


Aniki-Moderator's picture

Better yet, ask nothing and keep replying with, "You'd better talk to your dad."

Ispofacto's picture

I wouldn't disengage from this, it's too serious.  The lies need to be exposed, this needs to be nipped.  She isn't prepared to lie, she's not expecting to be questioned.  Unless you trust DH not to get sucked into this.


Aniki-Moderator's picture

Per Snotty, " doesnt want me to hes really against it."

CLove - in front of Snotty - can say to her DH, "Hon, you need to take Snotty to the doctor to discuss lupus symptoms, tests, and treatments so she can live her best possible life." 

CLove's picture

I dont want to get in the middle at all, even with a comment like that. Besides the fact that Husband does zero with any health care for SMPS. He doesnt know anything, and is never told. Its a matter of I suppose giving his permission.

Aniki-Moderator's picture

Then he needs to let her know or remind Snotty every time. "Snotty, I'd take you to a doctor if I could, but your mother has all of the control over your healthcare."

MissK03's picture

How is he not allowed but saying he wants no part.. is he really "blocked" against healthcare or never asked?? Nothing personally and not to compare.. I can see BM here using that line..

She hasn't brought skids (granted SS19 and SS18 have been driving themselves the past year and half) but she stopped taking kids to any appointments since their separation in 2011. Not because SO "blocked" her she never offered..

EDIT: I highly doubt she has ANYTHING wrong with her besides being crazy... I shouldn't assume though..

caninelover's picture

cLove can say to DH, oh by the way, B/M said this today, in case you want to take her to a doctor.  

That's all.  You can't care more than the parents.  Stay disengaged.

CLove's picture

Get it off the table. With SD16 SMPS

caninelover's picture

'exposing lies' is getting sucked back in.  Stay disengaged.  Mention it to DH at the most.  Then it's up to the PARENTS.  Not cLove.

caninelover's picture

Exactly this.  If you get sucked in, today lupus, tomorrow some other vague disease.

CLove's picture

I think its hocus pocus 3. The lupus imaginaria.

AgedOut's picture

I'd prepare yourself for your husbands misinformation, learn enough to be able to tell your husband "that isn't correct" or "from what I know of it x,y,z is the truth but if you google lupus you can find a good medical site that will help you learn more" then politely extract yourself. 

advice.only2's picture

Lupus can in fact be fatal if it has gone untreated and begun attacking vital organs.  Growing up there was a young mother from our church who passed away from it because it attacked her pancreas and by the time they diagnosed her it was too late.  I had a friend with Lupus who does not take care of herself and has gotten sick and hospitalized many times, but she is not terminal by any means.   They cannot do any type of testing for lupus, my friend was diagnosed because she thought she was having an allergic reaction to something and they did a blood panel and the endocrinologist was able to diagnose it, up until then they thought she was allergic to strawberries.

You know that TT and her offspring are all overly dramatic and latch onto any little thing that might garner them sympathy and some sort of payout.  I would take all of this with a grain of salt and unless and until FF shows up on your doorstep looking like wasted death, not much more you can do than keep the mantra “Not my circus……”

CajunMom's picture

I would NOT have asked your SD anything. When she brought up the Lupus BS, I'd have said, "I'm sorry to hear that."And ignored the part about her saying Dad being against it. As she continued to talk, I'd have done the "um hmm, sorry, yep" and any filler words you can come up with. By asking questions, you are showing concern and putting yourself right back in the mix.

I strongly suggest staying out of this even when your DH approaches you (as you know he will). Let HIM Google and get info on Lupus. Remember, Disengagement is your friend. She's not your kid and not your concern. She has TWO parents that can handle her Lupus and 10 years left of life. <eye roll > Continue the journey.


CLove's picture

SD16 SMPS just has that "little girl lost with quavering voice and imminent tears" thing she does. When she started on her path of anxiously mentioning it I totally pulled back on any questions. 

yep, minefield city there and not my Lupus-Imaginaria Circus.

caninelover's picture

Today lupus, tomorrow will bring a new ailment.  Toss it to DH and move on with your life.

Rags's picture

Shit behavior by adult children cannot be allowed access to anyone's home of life. Her choices have made the bed she must lie in and.... her "fatal" case of Lupus withstanding, apparently die in.

As for the Lupus.... until there is verified Dx paperwork, I call bullshit.  TT and FF are completely untrustworthy so ... until official documentation is provided,  call it as the likely stench of the bullshit that it is.  Smells like... Lupus Imaginaria.  A very severe and advanced case at that.

Odds are, TT and FF have been spending way too much time on WebMd.

dandelion wishes's picture

Bullshit indeed!  I don't believe she has lupus for a second.  Like CLove, the BM always has something (she's had lupus, lyme disease, fibormyalgia, cancer, etc, etc. - none of which were true) and she is always bringing "the girls" to doctors.  The YD just spent three days at a very well known international clinic getting testing for various "imaginaria" things. I can't imagine what that bill what be. 

Livingoutloud's picture

Both SDs constantly have supposedly grave illnesses and severe allergies. They want attention poor "sick" ones.  I don't comment. Don't even nod. Change the topic. Your SD now wants attention. 

caninelover's picture

Her teenage/young adult ailments:

Endometriosis (self diagnosed)

Chronic pain (self diagnosed)

Today:. Those are apparently gone.  Now everything is they are trans so everything is against them.

Always something with these SKs.

Stay disengaged.  Tell B/M to tell it to DH.




Exjuliemccoy's picture

This stuff is right from the Bottom Feeder's Playbook: come up with interesting illness(es) for attention and as an excuse to avoid being a functional adult, then play said card whenever expectations become uncomfortable..

My DH's elder daughter is a narc and struggles in social situations, so employment has always been anathema to her. Not surprisingly, she developed some mysterious medical problems that "those stupid doctors" never seemed able to diagnose. BPD YSD claimed to have breat cancer AND lupus at twenty. Crazy monkeys, eh?

Prepare yourself for lots more health shenanigans to come, CLove.



Rags's picture

According to my IL clan.

The town is also full of idiot teachers, idiot principals, idiot school counselors, etc.....

Every employer in the whole region is managed by idiots.  Yet... the only one to ever escape... is my incredible bride.  The rest of my IL clan interbreeds with the indiots. Sadly this is not only my DW's sibs. It is generations of this stuff.  

My IL clan will never look in the mirror or put the idiot label where it belongs.

Rags's picture

those who would exploit them, if they actually have the disease, try to convince others that they are.  IMHO anyway.

Those who lie, fabricate fake illnesses, etc... need to be employed as fertilizer IMHO.  Purged from the gene pool and the planet.  Those with legitimate issues, generally do not make shit up about their issues if anyone even knows they have the issue at all.  I never hid my disease. Mainly because I refused to go to some nasty restroom to take an insulin injection or test my blood. So, I took my insulin where ever I was when it was time to dose.  I had an HRBP once call me to the office to instruct me to got to the restroom because someone had complained.  I looked the HRBP in the eye and asked if it was official company policy to discriminate against people with a federally recognized disability in deference to someone who was just complaining... That was the end of that redicuolus discussion.  You don't want to see someone take an insulin shot? Turn your damned head, don't look.


I was Dx'd as a T-1 (Juvenile Onset) diabetic as ... a juvenile.  From day one of my Dx I have been on insulin.  41 years and counting. Dec 2022 will be my 42nd Dx anniversary.  What is absolutely infuriating to me is idiot parents who are shoving shit down the mawl of their T-1 diabetic children and juicing them up with ever more insulin.  These kids are destined for all of the horror stories of diabetes. Blindness, amputations, infertility, erectile disfunction, neuropathy, retinopathy, etc, etc. etc..  Because their parents are dipshits and the sweet kid spawn are too damned stupid to figure it out for themselves.  

My SS's HS GF was Dx'd as a T-1 before she was 2yo.  By the time she was 16 she could not feel her feet.  She would graze on candy, cakes, etc.... constantly and it would drive my SS insane. He was raised with a T-1 diabetic father and knew more about the disease and managing it than his life long diabetic GF and her idiot parents combined.

That all culminated with her having a severe hypglycemia event at a festival.   Here was this kid who had been a T-1 her entire life who collapsed and was writhing on the ground moaning "sugar, sugar, sugar" while her mother was shreeking for help.  My DW, SS and I were there.  We were all surrounded by fair food booths. Sugar, sweets, candy, of any and all description and the kid nor her BM thought to grab a syrup on a stick and have her take a bite.  So, I pulled the glucose tabs out of my pocket, I never go anywhere without them in my pocket, forced her mouth open, shoved the tab in, closed her mouth... and ... POOF! Miracles happen. In a very short time she snapped out of it, her mother fawned all over her, then... they went and scarfed on a shit ton of sugar.  My DW, SS and I went and got sausage on a stick.  Protein and fat. No notable carbs.  

If you are diligent in staying low CHO, you don't need insane doses of insulin to lower ridiculous blood glucose levels.  Chasing high BG with huge doses of insulin can cause you to stack insulin doses and ultimately overdose on insulin.  Causing your BG to drop like a rock until you are too low to function.

Last thing on SS's HS GF. At Homecoming she decided it would be a good idea to go barefoot with the rest of the gaggle of girls that hung out in my SS's group of friends. Great kids by the way.  GF sliced her foot open nearly to the bone as they were climbing around under the bleachers.  Never felt a thing. She went trapesing off across the dancefloor leaving puddles of blood behind her. SS had to grab her, pick her up, whipped a table cloth off of a table next to the dance floor and wrapped her lacerated blood gushing food with the table cloth.  Her parents chewed his ass for the ambulance being called and their lacerated daughter being hauled off to the ER.   

My first job out of college a T-1 diabetic colleague got a promotion when she brought a Doc notice to work saying she could not work night shift as she agreed to do when she accepted the job.  So, the rest of us had to go on night shift while she was granted a supervisor role because she was too full of shit to do her job.  I could have used the same excuse. But I refused to play my disease card.  No need. 

Our boss called me to her office, our Director was there as well, to ask why I could go to night shift as a T-1 diabetic and my colleague could not (my colleague was not in that meeting).  I closed the door and gave her/them my unbridled opinion.  She and her doctor were full of shit.  Is it easy to transition from days to nights as a T-1 diabetic? No it is not. But.... it can be done safely with little more than shifting AM/PM doses of insulin and shifting and staying on a flipped sleep schedule until the extended night shift schedule ends and you return to a day schedule.  Diligently testing BG regularly for the several days of the shift transition should happen. But there is little legitimate reason that it can't be done.  IMHO of course.

Sorry for the word vomit. This is a trigger topic for me.


thinkthrice's picture

Going forward, shorten your responses to one word if possible. 

Skid: " Mommy was in a flood, hurricane and mudslide all at the same time!!" "My sister was diagnosed with t(h)rombosis of the blowhole!"

CLove: "bummer."

CLove's picture

Havent heard anything about Lupus imaginaria yet...

Harry's picture

You can get Social Security disability for that.  A few hundred a month for BM is a deal she will be going after.  Better the doing tear foue letter word.    Work. 

dandelion wishes's picture

Disability diagnosis. Yep, I'm quite sure this is the BM's angle with herself and "the girls." Anything to not have to work. She's been after a diagnosis for years. Funny how nothing pans out. I assume the recent world-renowned clinic visit for YD was linked to a hopeful disability diagnosis. CS is coming to an end in 7 months - BM needs a new income. 

Gross. It's all disgusting.