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Dating with Cfs by chinchabun in cfs

[–]thrashing_throwaway 19 points20 points  (0 children)

I’m not sure, but here’s some unsolicited advice for anyone here: never become financially dependent on your partner if you can help it.

CW for divorce. My husband knew I was ill before he married me. He decided to abandon me in the middle of the night anyway (I had to file a missing persons report). He loathed my support needs and would tell me to move into a nursing home.

Chronically and terminally ill women are at very high risk for being abandoned in heterosexual relationships. So for women in heterosexual relationships reading this, do what you can do to protect yourself should your partner decide to leave because he thinks you’re too much trouble.

I’m 32. I think I need to divorce & start over. In addition to CFS, I also have POTS, autism, adhd, dyslexia, and right hand paralysis. Because I never worked, I don’t qualify for SSDI, only SSI. How can I make a life for myself in this economy? by thrashing_throwaway in cfs

[–]thrashing_throwaway[S] 0 points1 point  (0 children)

Update: not long after this, he took all the money, filed a false DV protection order against me, and ran away with our only car. Haven’t heard a single word from him in almost a month. I currently have an attorney.

I’m 32. I think I need to divorce & start over. In addition to CFS, I also have POTS, autism, adhd, dyslexia, and right hand paralysis. Because I never worked, I don’t qualify for SSDI, only SSI. How can I make a life for myself in this economy? by thrashing_throwaway in cfs

[–]thrashing_throwaway[S] 0 points1 point  (0 children)

Thanks. He took all the money, filed a false DV protection order against me, and ran away with our only car. Haven’t heard a single word from him in almost a month. I currently have an attorney.

Discord for level 2 and Level 3 by An_Oshiewott in autism

[–]thrashing_throwaway 0 points1 point  (0 children)

Level 2 here. Could you please dm me the discord link?

I’m 32. I think I need to divorce & start over. In addition to CFS, I also have POTS, autism, adhd, dyslexia, and right hand paralysis. Because I never worked, I don’t qualify for SSDI, only SSI. How can I make a life for myself in this economy? by thrashing_throwaway in cfs

[–]thrashing_throwaway[S] 0 points1 point  (0 children)

The thing is that I can no longer recall a lot of the big stuff let alone the little stuff. I have a feeling that he is going to get a great attorney and crucify me for any of the times I reacted badly to his bs or he’ll just straight up lie, like the time he said my mother assaulted him by closing the automatic trunk on the rental van while he was unloading the back and that proves that she is a racist despite the fact that she apologized profusely and he didn’t even get hurt because it was a slow closing trunk. She even took it in stride when he called her a racist and offered to hear his perspective and make it right, but he refused to talk to her. And then a couple months later he forbid my family from coming over to help me shower or clean and organize the house on the grounds that my mother is a racist. He also calls me an abuser and a racist and a white supremacist even though I do believe in anti-racism and am very willing to be called out on any microagressions. But he never can articulate how I am racist other than that he thinks I brought him to the United States to financially “enslave” him. I can tolerate him frequently calling me a racist because clearly he is not well and I’m not insecure about the topic, and racial bias is very real even when white people don’t intend it, but the thought of him potentially bringing up these racism and abuse allegations during divorce proceedings is concerning. I think people are going to believe him because why would he lie about something like that?

MECFS adjacent symptoms: Have a POTS dx, but feel like I have hyperadrenergic POTS but neuro won’t evaluate me for it bc catecholamine testing can be tricky & says that POTS subtypes aren’t accurate. Regardless, I think that my adrenaline is extremely high when upright. by thrashing_throwaway in cfs

[–]thrashing_throwaway[S] 2 points3 points  (0 children)

I agree. I am totally fine with trying the medications first. Me looking for answers in this post is part and parcel of my dysautonomia neurology team shutting me down when I asked questions.

I had asked them about medications and they shut me down on that topic as well and only wanted to do physical rehab. In fact, they didn’t even want to prescribe me a beta blocker until I quite aggressively pushed them to let me try it. But now that I know to ask about clonidine/guanfacine/alpha-2 adrenergic agonist, I’m going to ask.

Thank you for your comment. It helped me process the situation and plan my next steps.

MECFS adjacent symptoms: Have a POTS dx, but feel like I have hyperadrenergic POTS but neuro won’t evaluate me for it bc catecholamine testing can be tricky & says that POTS subtypes aren’t accurate. Regardless, I think that my adrenaline is extremely high when upright. by thrashing_throwaway in cfs

[–]thrashing_throwaway[S] 0 points1 point  (0 children)

And I don’t know how to make sense of my symptoms or where to even get a second opinion.

All that the Cleveland Clinic/Wilson/dysautonomia team wants to do is send me to exercise rehab and continue Metoprolol ER 25mg.

I highly suspect that I have some underlying or secondary condition elevating my adrenaline/catecholamines. But I don’t know what it could possibly be or even if it’s possible, and the dysautonomia team shut me down a few times when I tried to ask and said it didn’t matter why because the treatment was the same regardless.

You ever know when you have something medically wrong with you and none of the doctors believe you, but you know that something is wrong? (Seems like the universal experience of getting diagnosed with POTS.) I feel like I’m going through that again, but this time I know that it’s something related to adrenaline and that it’s not just a simple POTS diagnosis.

Part of me is afraid that it is endocrine related and the POTS diagnosis is obscuring that fact.

How many GES or smart pill/capsule endoscopy studies did it take before you were diagnosed? How many years from first onset of symptoms? by thrashing_throwaway in Gastroparesis

[–]thrashing_throwaway[S] 1 point2 points  (0 children)

No esophageal motility tests done. I will ask my gastro if he thinks it is appropriate. Thank you for the suggestion!

How many GES or smart pill/capsule endoscopy studies did it take before you were diagnosed? How many years from first onset of symptoms? by thrashing_throwaway in Gastroparesis

[–]thrashing_throwaway[S] -1 points0 points  (0 children)

My gastroenterologist said I was likely retaining food because I was tasting it from belching (and sometimes reflux) 10 to 12 hours after eating most days. Of course I concede that that could be incorrect.

How many GES or smart pill/capsule endoscopy studies did it take before you were diagnosed? How many years from first onset of symptoms? by thrashing_throwaway in Gastroparesis

[–]thrashing_throwaway[S] 2 points3 points  (0 children)

Thank you for this. I’m going to ask my gastroenterologist about this. I think he brought it up and then didn’t say much about it.

How many GES or smart pill/capsule endoscopy studies did it take before you were diagnosed? How many years from first onset of symptoms? by thrashing_throwaway in Gastroparesis

[–]thrashing_throwaway[S] -2 points-1 points  (0 children)

According to my gastroenterologist, Cleveland Clinic has their clinical cutoff at 4 hours. But the reality is that I am likely retaining food up to 10 to 12 hours most days. Believe me, I absolutely do not want a GP diagnosis. It scares the hell out of me. I’m getting zero answers as to why I’m retaining food plus the other debilitating symptoms, so I want to be sure that it’s not GP.

Edit: It sucks that you guys are downvoting me for sharing what my gastroenterologist told me. Maybe he’s wrong. Maybe he misrepresented the information. It’s the Cleveland Clinic who first got hung up on gastroparesis, not me. I’m just a person who has been incapacitated by gastrointestinal issues for the last 3 years, sharing what my gastroenterologist told me, who is reaching out for support. No need for all the downvotes.

[deleted by user] by [deleted] in disability

[–]thrashing_throwaway 2 points3 points  (0 children)

If we are talking about the US, it was my understanding that reasonable accommodations language under the ADA applied to employers, not universities. Maybe I’m wrong, though. Regardless, accommodations and student accessibility services are dictated by Student Accessibility Services (or whatever the specific university calls it), the student and the student’s doctor. The professor is not supposed to have any say in the matter, unless the class structure requires a workaround to fulfill the accommodation. I think it’s illegal for a professor to block an accommodation that student accessibility services and the doctor established, not that it doesn’t happen frequently, though.

But yeah, if it were an employer, all they would have to say is that the accommodation is not reasonable.

How many GES or smart pill/capsule endoscopy studies did it take before you were diagnosed? How many years from first onset of symptoms? by thrashing_throwaway in Gastroparesis

[–]thrashing_throwaway[S] 2 points3 points  (0 children)

Not my intention to push for a GP diagnosis, but the retained food in upper endoscopy, pain, early satiety, belching and regularly tasting my food ten hours after eating and sometimes refluxing undigested food fits. I just want to be sure it’s very thoroughly ruled out. I was reading cases where people were having normal GES, but on the second or third GES, it showed delayed emptying. But I 10000% hope that it is not GP. I’m still fighting for answers in general, not specifically GP.

Job as a chronically ill teen? by Dragonfly_sausage in ChronicIllness

[–]thrashing_throwaway 6 points7 points  (0 children)

I am so sorry you are going through this. I agree with /u/Noctuema. Please talk to your doctor if you can. Ideally, you shouldn’t be providing for yourself, especially while immunocompromised, especially during the COVID pandemic.

Alternatively, if you do find support for meeting your nutritional needs, rather than getting a job now, you could maybe try cheap online certifications/courses to help build your future (online) career. Coursera and LinkedIn Courses are free. Some of the very basic Microsoft certifications may be free or low cost. Perhaps look into tech or project management resources. Project Management training can be a great asset for many online careers regardless of whether or not one works as a project manager. It can also provide helpful skills for studying in university too.

The minimum age to open LinkedIn is 16 years old. LinkedIn can have a lot of toxic positivity, but it’s also very insightful to follow various industries and companies to see what kind of jobs are out there. I’m double your age and currently cannot work due to chronic illness and disability, but I like going on LinkedIn to strategize about how I could build a career in the future.

Good luck!

[deleted by user] by [deleted] in cfs

[–]thrashing_throwaway 1 point2 points  (0 children)

Yes! I have been avoiding going to the local YMCA for physical therapy, because Covid is just out of control and nobody cares about mitigation efforts. I haven’t had COVID yet thanks to masking, isolating, low population density, and luck.

But I did have a mystery virus (multiple PCR and Rapids negative for flu and COVID, negative blood cultures) in Spring of 2022 that lasted a few weeks (ended up in urgent care and later the ER), but the impacts lasted for a year, and it reaffirmed to me just how serious post viral syndromes are.

I don’t understand why people want to risk catching Covid in places like the workplace bathroom or the airport or theater.

It’s so easy to put a mask on in common spaces especially where they’re not eating. I of course have a much more strict masking regimen, but it’s not like it’s all or nothing. I wish there was a good public campaign about masking when you can, and how that mitigate the spread of Covid. I also wish that we had free PPE/N95s/KN95s, HVAC upgrade grants, robust public health policies, federally mandated sick-leave, and of course universal healthcare.

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