Carlin & Evan 11: Scary Health Situation

[Mrs Ms]

The friend who mentioned taking notes at a doctors appointment was my lightbulb. I always have pen and paper with me. Try to bring notes with me because my mind will go blank when asked. That way I know when the temperature started or the accident happened or what that weird symptom was. And then I can write stuff down if it becomes overwhelming. Especially websites, medicines or dosages. It also helps with medical anxiety because it tricks my brain into thinking I am being proactive. 🤷‍♀️

[GuineaPigCourtship]

Written discharge instructions that a patient can refer back to ought to be standard. They are so helpful.

[rebeccawriter01]

Carlin's never been known for her common sense and seems to find that cute and endearing (i.e. not knowing her father's full name or marveling that Evan knows his social security number/or she and Evan thinking they would go to the doctor's office every day when they learned of her clotting disorder and the shots). The medication she was given was a trial before the long EEG, as she had an episode in the doctor's office. She was told to go off it to get a more accurate read on the EEG.

Common sense says that she would have specifically asked if she could go back on the medicine if it was helping. I did ask that back in the day because it seemed to be the only thing keeping me vertical. The EEG was a test not treatment so it was silly of her to assume that after the test life would return to normal with no issues.

My doctors always send an after report to me with a treatment plan within 24 hours of seeing them. It is helpful and allows me to review information I may have forgotten in the info dump that can be a part of these things. 

However, the doctor and healthcare staff do rely on patients to be proactive. I'm lucky that my oncologist will call with results and then a nurse follows up 24-48 hours later with checking in to see if I have questions, issues, or concerns. Carlin and everyone needs to be an advocate for their own health. If the doctor said, stop taking the medicine for the test and I still had the meds plus refills, I am going to interpret that differently than him or her just saying stop the meds. If I read it as just stop the meds, I'm, going to ask what am I supposed to do the in mean time if I have another episode.

Just my interpretation but Carlin seems to be in that stage of her diagnosis where she wants to deny the issue exists. She is qualifying and reconciling her episodes as not that bad or better than before. I get it. I did it too. When I was diagnosed with cancer, I would immediately tell those I had told that it wasn't that bad or that other people had it worse. I tried to say that after all the tests that doctors weren't really helping - getting a diagnosis and treating the right thing are very different issues.

Carlin is very casual about safety with herself and her children. It isn't that unusual. It is very annoying for those of us who are abundantly cautious because we want to scream at her that she is doing things wrong. I had hoped that Evan (or even Michaela) could be a voice of reason for her. However, at this point she seems to not be ready for facing a chronic issue that she may have to face. I had to see a therapist in addition to my doctors to get to the point that I was ready to take on the world of disease and cancer. She has that friend who appears in a lot of her videos on Instagram - the one who has IIH. Maybe she could be a help too in terms of getting Carlin to understand that this isn't like a cold or stomach bug. Taking a round of antibiotics won't cure her. She may very well be in for a lifetime of meds (and adjustments).

[feministxtian]

47 minutes ago, rebeccawriter01 said:

My doctors always send an after report to me with a treatment plan within 24 hours of seeing them. It is helpful and allows me to review information I may have forgotten in the info dump that can be a part of these things. 

I carried a notebook every time Mr. went to the doctor/ED/hospital (starting with the chronic pancreatitis). At first I thought he just wasn't listening to the doctor. Found out later that he really did not understand what the doctor was saying to him. I had my notebook and the time to explain things to him. For him to understand it would take more time than the doctor had for him. I tossed those notebooks the day he died. 

[CarrotCake]

When my dad was in the ICU with COVID, my husband installed a call-recorder on my mom’s phone. Of course we informed the doctor about this but it was very helpful to be able to replay the calls later. Especially since we could not meet the doctor in person and my mom wanted to discuss the calls with my aunt who is a doctor herself.

If I ever get in a crazy medical situation I will also ask my doctor if I can record the appointment.

Edited July 18, 2022 by CarrotCake

[HereticHick]

1 hour ago, rebeccawriter01 said:

Carlin's never been known for her common sense and seems to find that cute and endearing.

Common sense says that she would have specifically asked if she could go back on the medicine if it was helping....

Just my interpretation but Carlin seems to be in that stage of her diagnosis where she wants to deny the issue exists. 

Carlin is very casual about safety with herself and her children. It isn't that unusual. It is very annoying for those of us who are abundantly cautious because we want to scream at her that she is doing things wrong. I had hoped that Evan (or even Michaela) could be a voice of reason for her. 

Agreed. But we can't expect Carlin to overnight become a conscientious, curious, proactive woman.  She has to unlearn a lot of lifelong behaviors.

As a fundy stay-at-home maiden, she's been rewarded for her "feminine flightiness." And for "keeping sweet" and not asking questions.

As a some homeschooled with primarily workbooks, and then a college student at a 4th-rate bible college, and then an online student at another fundy institution, she isn't used to asking questions.

She's been told all her life that God will provide, God will take care of everything, God (and Gothard) should never be questioned. And that the highest fulfillment of her destiny as a women is to have a boatload of kids, no matter the economic or medical obstacles.

Edited July 18, 2022 by HereticHick

[zygote373]

I think a lot of the confusion also comes from the fact that she doesn't have a diagnosis yet, and the doctors are therefore only treating her symptoms vs. the root cause at this point. It sounded like the doctors aren't sure yet if her episodes are long term or temporary, or even if they're seizures since they've never been caught on an EEG. From what she said before she started taking them, it sounded like these seizure meds were an experiment.

I could see her thinking she was supposed to wait for the multi-day EEG results/her next doctor's appointment to decide whether to go back on the meds. Especially since it took the episodes a while to come back - so long that she didn't have one during her EEG even though the doctors said the meds would be out of her system by then, or even during her vacation afterwards. I don't think it was unreasonable for her to hope that the meds were enough to trigger the episodes to stop, and that maybe it was just an acute issue and not a chronic problem. Plus, even if it was a mistake, it's helpful information for the doctors to know that the episodes did come back when she stopped the meds for long enough.

[CarrotCake]

The school of the dinning room table strikes again 

 

[Dandruff]

1 hour ago, zygote373 said:

I could see her thinking she was supposed to wait for the multi-day EEG results/her next doctor's appointment to decide whether to go back on the meds.

I can too, though it would have been sensible (yeah, I know) of her to ask before that.

[Giraffe]

On 7/17/2022 at 12:13 PM, Smash! said:

I get it‘s scary and overwhelming. I get it‘s scary to take medication with massive side effects that affect the brain.

Maybe it‘s because I have a decent education and like to be informed but I don‘t understand why someone doesn’t know what they have and what it implies. Ask your doctor what all of this means. They seem to have access to good hospitals/specialists. Search online for reputable sites.

I don’t know if this is a case of SOTDRT. 

This strikes me as quite a privileged position.
 

Not all tests lead to diagnosis, even if someone asks all the “right” questions. Sometimes doctors just don’t know. 

Also, so many people - who aren’t fundy in the least - have no idea they can advocate for themselves. Add to that the Bates’ instant obedience towards all those perceived to be in authority and it’s a perfect storm. 

[clueliss]

9 hours ago, Mrs Ms said:

The friend who mentioned taking notes at a doctors appointment was my lightbulb. I always have pen and paper with me. Try to bring notes with me because my mind will go blank when asked. That way I know when the temperature started or the accident happened or what that weird symptom was. And then I can write stuff down if it becomes overwhelming. Especially websites, medicines or dosages. It also helps with medical anxiety because it tricks my brain into thinking I am being proactive. 🤷‍♀️

I’m not done reading yet in this thread but I had to jump ahead and provide some information on this subject.

 

I’m not done reading yet in this thread but I had to jump ahead and provide some information on this subject.

 

One of the bloggers that I follow on YouTube Peter and Mary Frey (The Frey Life) do a lot of doctor visits because she has cystic fibrosis.  And on their videos they talk about the app Abridge.  I haven’t used it yet but it allows you to Record your doctor visits and it will transcribe the notes so that you can go back and review them.

[CanadianMamam]

2 hours ago, Giraffe said:

This strikes me as quite a privileged position.
 

Not all tests lead to diagnosis, even if someone asks all the “right” questions. Sometimes doctors just don’t know. 

Also, so many people - who aren’t fundy in the least - have no idea they can advocate for themselves. Add to that the Bates’ instant obedience towards all those perceived to be in authority and it’s a perfect storm. 

I agree. I am well educated, I am good at asking questions, but my medical journey had been hard. There have been a lot of tests but very few answers and no diagnosis other than "autoimmune of some kind" and often contradictory suggestions and medications. 

Add in the fact that women often have a hard time getting doctors to take them seriously and I can honestly say it's not as easy as "ask more questions". 

[luv2laugh]

Evan just posted an update now. Carlin has a concussion. She fell again. The doctor told him he has to stay awake all night and wake up Carlin every hour and check her vitals. 

Edited July 19, 2022 by luv2laugh

[Keys]

Just watched the update too - man, I really feel for them. Evan especially; absolutely nothing to snark on there. He said he’ll be up taking her vitals every hour overnight. I hope they can get a diagnosis soon. Carlin also mentioned that the med she is on is Keppra. 

[Melissa1977]

34 minutes ago, Keys said:

Just watched the update too - man, I really feel for them. Evan especially; absolutely nothing to snark on there. He said he’ll be up taking her vitals every hour overnight. I hope they can get a diagnosis soon. Carlin also mentioned that the med she is on is Keppra. 

Plus feeding the baby, plus the toddler who probably wakes up full of energy. Plus the fact he cannot work on his job... Evan is no doubt under maximum stress.

I know there is more than it is shown on camera. But I wonder where Michaela is... an actual nurse who loves children... Why not staying a night helping? 

[Keys]

55 minutes ago, Melissa1977 said:

Plus feeding the baby, plus the toddler who probably wakes up full of energy. Plus the fact he cannot work on his job... Evan is no doubt under maximum stress.

I know there is more than it is shown on camera. But I wonder where Michaela is... an actual nurse who loves children... Why not staying a night helping? 

Totally! Poor guy looks exhausted. Carlin’s friend was staying the night to help with the kids, but I also wondered where her family was helping out in all of this. 

[FiveAcres]

6 hours ago, CanadianMamam said:

I agree. I am well educated, I am good at asking questions, but my medical journey had been hard. There have been a lot of tests but very few answers and no diagnosis other than "autoimmune of some kind" and often contradictory suggestions and medications. 

Add in the fact that women often have a hard time getting doctors to take them seriously and I can honestly say it's not as easy as "ask more questions". 

@CanadianMamam reminded me of something about myself that I have mostly forgotten.

From my late teens to my mid-twenties I had ...something.... in my hands that resembled rheumatoid arthritis. I had a lot of pain, weakness and swollen joints. At one point, I thought it was also starting to occur in my shoulders. Once I got decent health care coverage after I got out of college, I spent a fair number of visits to the doctor trying to get a diagnosis. I evidently lacked some sort of marker that would have allowed them to dx rheumatoid arthritis. I had multiple tests for strep. Raynaud's Disease was mentioned but that apparently didn't fit either. I had one doctor tell me about wastebasket diagnoses, which is when something is apparently wrong but they don't know precisely what. I learned about auto-immune diseases. I had some minor surgeries to remove nodules and release a trigger finger that gave some relief. I had a tremendous amount of anxiety about it continuing to progress until I couldn't walk. I tried a number of prescribed drugs, but didn't seem to get much relief.

And then, somewhere between the age of twenty-five and thirty, my symptoms started going away. I didn't really notice I was getting better. Instead of a chronic problem, I would have occasional flare-ups. Then the flare-ups got further apart. And when I stopped having flare-ups, I didn't notice until a couple of years later.

Decades later, I can't even find the surgical scars on the palms of my hands very easily. I did leave me with a lasting interest in ergonomics and how to make daily life more accessible. 

 

 

[llucie]

6 hours ago, Keys said:

Totally! Poor guy looks exhausted. Carlin’s friend was staying the night to help with the kids, but I also wondered where her family was helping out in all of this. 

I really feel conflicted about Michaela in this. On the one hand just because she is childless i dont think she should be made to feel she should be a carer for her family members. I do wonder sometimes if thats the sole reason she went to nursing school and not because it was something she actually liked.

But on the other she herself said she went to nursing school so she could take care of her granparents. This would be a good moment to put that degree to some use. Probably just being there watching the kids would be a huge relief for Evan...

[BeccaGrim]

Evan and Carlin have had a pretty rough health journey since they got married. Meningitis after Layla and now this after Zade.  Also Covid right after Layla was born too. They're very young. She called herself old at 24 when she talked to Alyssa in the VLOG.  He has just finally completed his education. I hope they can get this worked out and stopped. 

[Giraffe]

For all the fundies’ talk about how coming from a large family means there’s always someone to help in times of need, I find it ironic that both Carlin (& Jill Rod’s mom in Jill’s thread) are going through major health problems and yet there’s hardly anyone around to provide genuine help.  

[Angelface]

Evan’s family seem to have been really helpful but they live further away.

I really can’t see Kelly or Gil being particularly useful. Leave and cleave Carlin! Not knowing when this situation is going to end must add considerably to their stress. 

[displayname]

I wonder if Carlin is the scapegoat sibling? The Bates still have everyone in the fold as of now for the most part and every family needs someone to blame when things get rough. I have a strong hunch that the stand offish behavior of her family during this medical emergency might stem from them losing their show and maybe that Instagram post really did carry more weight with UP then what they want to let on. Which is sad considering they're all supposed to be this big loving family, too bad fundie love is conditional. 

[Thorns]

On 7/17/2022 at 6:07 AM, neuroticcat said:

She also says the doctors think she had an underlying condition she’s had her whole life that was likely activated/triggered by pregnancy/labor trauma. 

Wonder how that’s discussed in QF circles. 
 

She says the doctors need to figure out if it’s triggered by heart or by brain but until then : meds, lots of feeling out of it, and mom guilt. She says Evan is telling her she needs to show up for herself first (good job, Evan), but she follows it up with fundie guilt…show up for myself so I can show up for anyone else. 
 

 

Did she say this? Heart as in physical heart or as in feelings/psychic heart?

Because there is something called psychogenic non-epileptic seizures or PNES, and one of the videos they posted (a story on instagram?) could look kinda like that (more shivering than twitching, moaning/somewhat awake etc). That would fit with not showing up on tests. That would also fit with based in trauma.

Whatever the cause, I hope she does get proper treatment, acceptance and help. I just worry that if some/all of her episodes are rooted in deep set trauma and needs therapy, not meds, that she would not get the help she needs. TBF, with her upbringing and health scares she would probably benefit from therapy without PNES in the mix, but the likelihood of her getting it is probably low.

[CanadianMamam]

I wonder if Evan is better at knowing when Carlin needs a break than she is and that is why she hasn't had a physical collapse around him. That he can read her and suggest that she sit/slow down, whereas left to herself she might not. 

My husband and I are like this, he is good at knowing when I need a break, even when I don't necessarily see it. 

Re: family. Carlin doesn't seem close to the local members. The sisters she is closest to are far away. She has Whitney, who seems sympathetic but has 4 kids and is likely also taking the burden on at the boutique. 

She does not seem close to Josie or Tori and seems actively at odds with Erin. Not sure how close she and Michael are, excpet Michael has been helping with the kids to some extent. Addee and Ellie are teenagers and can only do so much.

 

[Bluebirdbluebell]

Poor Carlin! I keep seeing poor Evan, because his wife is sick and he has to parent their kids. I think Carlin is having a rough time and she doesn't want to be sick.

3 hours ago, llucie said:

I really feel conflicted about Michaela in this. On the one hand just because she is childless I dont think she should be made to feel she should be a carer for her family members. I do wonder sometimes if thats the sole reason she went to nursing school and not because it was something she actually liked.

But on the other she herself said she went to nursing school so she could take care of her granparents. This would be a good moment to put that degree to some use. Probably just being there watching the kids would be a huge relief for Evan...

Normally I would agree with you, but this is a dire and urgent situation. I think under the circumstances she could help out more. She is helping take care of Kelly's mother a little bit, but if Kelly's mother is able to be alone, Carlin's situation might be more urgent.

3 hours ago, BeccaGrim said:

Evan and Carlin have had a pretty rough health journey since they got married. Meningitis after Layla and now this after Zade.  Also Covid right after Layla was born too. They're very young. She called herself old at 24 when she talked to Alyssa in the VLOG.  He has just finally completed his education. I hope they can get this worked out and stopped. 

Yes, although she and Evan had COVID in August and Layla was born in January.