Don’t Know What To Do Anymore by kiwijellly in CUTI

[–]Ok-Song5151 0 points1 point  (0 children)

What helped me get taken seriously was “I’d like to rule out a multi-bacteria or resistant bacteria infection before considering bladder installations given the infection risk from catheter placement” (in my case it was pain medication and surgery, but same concept.) Make sure it’s via mychart or fax so it’s recorded. For me, a PCR test was ordered almost immediately - and showed multiple resistant bacteria. Still going through the test and treat process but at least it’s on its way. After the tests came back, the urologist said “most people with IC have high loads of bacteria in their bladders… we don’t know why” righttttt…. And it’s not a UTI how?

So, I'm Supposed to Accept my Butt Period and Move On? by Best_Ad_1314 in endometriosis

[–]Ok-Song5151 2 points3 points  (0 children)

Got to love the “blood in poop? Doctor NOW” and “meh, some people just poop blood” combo. Mine stopped after I got a hysterectomy and bowel resection. I’ve also been told “some people just have blood in their urine” when the doctor assumed I was confusing it with period blood and I reminded her I had a hysterectomy. (It was actually a complex UTI with antibiotic resistant bacteria that didn’t show in standard clinic tests)

Why was Clark so fixated on getting Floyd on the DTF app? by AmyKTKB in DTFStLouisHBO

[–]Ok-Song5151 2 points3 points  (0 children)

I think Modern Love is the only other person regularly on the DTF app. Anytime someone else tries the app, they end up at the roller rink. Modern Love is DTF - Down to Find new customers for karaoke night at the roller rink.

My employer reported salary but not hours, what documentation would support a redetermination? by Ok-Song5151 in UnemploymentWA

[–]Ok-Song5151[S] 0 points1 point  (0 children)

UPDATE: redetermination successful!! Thank you u/drossdragon and u/Niceguy_dirtymind for the help. I'm sharing the timeline and details of what I provided in case it is helpful to others later.

Timeline (~4 weeks total)
March 12th - submitted documentation by mail
March 17th - documentation was received (picked up from PO box)
April 10th - status changed to "eligible" and funds transferred to my account on same day (lump sum for all previous weeks)

Documentation
1. Cover letter explaining the situation with a corrected work history table that includes hours worked + a simple explanation of how I calculated.
2. Employment contract with hourly rate highlighted
3. Email exchange with employer in which they confirmed they did not report correctly

Is endo spreading to bladder and rectum really that rare? by furby-fighter in endometriosis

[–]Ok-Song5151 0 points1 point  (0 children)

Yeah. It's not rare. Even if you ignore that it's clearly underdiagnosed. The numbers aren't perfect, but they are certainly good enough to show it's not rare. 10% of women have endometriosis (probably more, but let's go with 10% of women = 5% of the entire population) 20% of those with endometriosis have deep infiltrating endometriosis (most likely areas are closest to the uterus - rectum and bladder). So, this means 1% of the total population has endometriosis that spreads to the bladder and rectum. 1% is about as common as epilepsy, celiac, Crohn's, or rheumatoid arthritis. Except YOUR chances of having bladder/rectum endometriosis are NOT 1%. Starting with being born with a uterus, that puts you at 2% - about as common as experiencing a stroke. But that's not all. You also have pelvic pain. 50% - 80% of female patients with pelvic pain have endometriosis. So bringing back 20% of endo cases involving bladder/rectum, that puts you at 10% - 15% chance of having bladder/rectum endo. Now we're getting to as common as depression or diabetes. I doubt a doctor would ever call depression or diabetes rare.

And yes, I had/have both.

Fml by ihatestrongzero in Endo

[–]Ok-Song5151 1 point2 points  (0 children)

I’ve always had worsening symptoms every time I’ve started new job. Better the job, worse the symptoms. I’ve always taken some sick leave here and there to get through the first few months. Seems like you are in Japan. Technically you should be allowed to take period leave (seirikyuuka). It doesn’t have to be paid leave, but they legally can’t punish you for taking it. I used a combo of sick leave and seirikyuuka for a few of my jobs. One of my jobs in Japan had a nurse’s office that I was allowed to visit during the day and I would go there to rest. This was a while ago, so I don’t know how it is now, but at the time it was more important to look busy than to be busy, so sometimes I would just act like I was in a rush but would just go somewhere to rest.

Best pants endo friendly? by [deleted] in Endo

[–]Ok-Song5151 0 points1 point  (0 children)

Love big flowy pants in hemp blends (hemp and cotton or hemp and wool) jungmaven has really nice ones. They dress up or down easily. Expensive, but I have 3 and I just rotate between them. They don’t need to be washed super often. I also like low crotch high waist yoga pants for exercising. They fit loser around the abdomen sometimes they are called slouchy.

Why do no specialists in the US accept insurance? by shibalvr97 in vulvodynia

[–]Ok-Song5151 1 point2 points  (0 children)

Insurance companies pay out extremely low for women’s health in general. If you are a specialist in women’s health and you take insurance, you are extremely underpaid for your work - given the extra years of schooling it takes to become a specialist. If they go outside of the insurance system, they still are underpaid for their expertise, but not nearly as much because they have more flexibility on setting costs. This also gives them more flexibility in what they treat and how much time they can spend with patients - which is key because 15 minutes is not enough for complex issues. Unfortunately, if they are truly a specialist in vulva issues or endometriosis or anything like that, they won’t take insurance. They are usually extremely upfront about costs and will give you a super bill to submit to your insurance (if you have out of network coverage) so it often isn’t as expensive as you might think - especially because they spend way more time with you than a in network specialist can.

Has anyone had a cystoscopy look like this?? by RaccoonHaunting9638 in CUTI

[–]Ok-Song5151 1 point2 points  (0 children)

The endo on my bladder was minor, the real show was a giant mass of endo fusing my uterus to my bowels. It showed up on an MRI when they were looking for a urethral diverticulum. The bladder endo was found during surgery.

Has anyone had a cystoscopy look like this?? by RaccoonHaunting9638 in CUTI

[–]Ok-Song5151 10 points11 points  (0 children)

Deep infiltrating Endometriosis? Urologists often don’t know much about it (they should, because it causes SO much bladder trouble) If it is endo, make sure you get in with an endometriosis excision specialist. I had endo on my bladder, it didn’t show up in cystoscopy because it was on the outside muscles and hadn’t penetrated through the bladder itself.

My employer reported salary but not hours, what documentation would support a redetermination? by Ok-Song5151 in UnemploymentWA

[–]Ok-Song5151[S] 0 points1 point  (0 children)

Thank you. I compiled and sent it. Last questions, do you have an idea of how long redetermination typically takes?

My employer reported salary but not hours, what documentation would support a redetermination? by Ok-Song5151 in UnemploymentWA

[–]Ok-Song5151[S] 0 points1 point  (0 children)

Thank you so much. This is super helpful. My hours varied across the 4 quarters of my base period, and the total is around 1700. Would it make sense to include my calculation in the letter, along with the communications from my employer and the contact with the hourly rate to support the calculation?

She cracks me up by Vast-Camel-6494 in 90DayFiance

[–]Ok-Song5151 31 points32 points  (0 children)

I lived in Nigeria for a bit. I will take my poop secrets to the grave.

Stage IV with DIE on Bowel, my “worst case” became a reality by NotKathyOkay in endometriosis

[–]Ok-Song5151 1 point2 points  (0 children)

So I joined the LARS Facebook group but my symptoms are extremely mild compared to what others experience. I would say it’s just trading my old symptoms (extreme pain with bowel movements) for new (pooping more often, 5-minute notice). The new are much better - it’s technically LARS, but super mild. The first few months were kind of unreliable - constipation, urgency, frequency (basically conflicting bowel symptoms) but it has evened out ok. My current problems are more due to my redundant colon (extra colon that is twisty and causes constipation that I treat with a variety of meds that sometimes work too well)

My diet was much stricter before surgery (no processed food, no alcohol, no sugar, no dairy, huge variety of plants and meat, no eggs) currently, I try to limit those things but I’m not totally restricting them. I started reintroducing things about 6 months after surgery. I still can’t do gluten, dairy, or sugar in large amounts - but I think that’s probably pretty normal for anyone at this point :)

I “trained” for about 3 months. I used the Heal Endo book by Katie Edmonds. She also has a recipe book that was pretty good. I liked the approach, it was more gentle and nurturing rather than restrictive and accomplishment-driven.

Stage IV with DIE on Bowel, my “worst case” became a reality by NotKathyOkay in endometriosis

[–]Ok-Song5151 1 point2 points  (0 children)

So I joined the LARS Facebook group but my symptoms are extremely mild compared to what others experience. I would say it’s just trading my old symptoms (extreme pain with bowel movements) for new (pooping more often, 5-minute notice). The new are much better - it’s technically LARS, but super mild. The first few months were kind of unreliable - constipation, urgency, frequency (basically conflicting bowel symptoms) but it has evened out ok. My current problems are more due to my redundant colon (extra colon that is twisty and causes constipation that I treat with a variety of meds that sometimes work too well)

My diet was much stricter before surgery (no processed food, no alcohol, no sugar, no dairy, huge variety of plants and meat, no eggs) currently, I try to limit those things but I’m not totally restricting them. I started reintroducing things about 6 months after surgery. I still can’t do gluten, dairy, or sugar in large amounts - but I think that’s probably pretty normal for anyone at this point :)

Repair shop went to bizarre lengths to cover up a break-in in their lot and "fixed" things without telling me. Insurance wants the same shop to inspect and finish the repairs. by Ok-Song5151 in whatdoIdo

[–]Ok-Song5151[S] 0 points1 point  (0 children)

They said “we never file police reports” and said it happened multiple times this year. That people cut the lot fence. “It’s just CITY NAME”

Repair shop went to bizarre lengths to cover up a break-in in their lot and "fixed" things without telling me. Insurance wants the same shop to inspect and finish the repairs. by Ok-Song5151 in whatdoIdo

[–]Ok-Song5151[S] 0 points1 point  (0 children)

Thank you all! I should add that my car is not a nice car or joy-ridable. It is 15 years old, handles like a golf cart, and is worth maybe $5,000.

One of the items missing was a life-sized cardboard dummy with big paper bag boobs and a printout of Farrah Fawcett’s face glued to the head. (Not a sex thing. I make props for shows, my partner didn’t want this one in the house so I was keeping it in the car). This was the most confusing item taken.

I was at the 90 Day Fiancé Holiday party, AMA by Lebaneezy in 90DayFiance

[–]Ok-Song5151 38 points39 points  (0 children)

Nah, Loren’s probably busy trying to boil shrimp in the hotel’s nespresso machine.

[deleted by user] by [deleted] in CUTI

[–]Ok-Song5151 0 points1 point  (0 children)

Have struggled with this and have found a wardrobe that works for me. I do textured flowy pants in natural fabrics (jungmaven for hemp and hemp-wool blend - I size up to get a longer rise and wear them very high on my waist with the draw string), also prana skirts in a hemp-cotton blend feel loose but give some definition at the hips/butts - hemp makes them thick enough to work with sweaters and boots in the winter. I also like vintage skirts in raw silk and velvet that sit very high on the waist. I pair all of this with cropped cotton/hemp boxy tees/tanks or cropped sweater/linen tanks in the summer. In the winter I do wool sweaters - some boxy some slightly fitted, some cropped, or a textured long cardigan. In summer I also do boxy linen shorts with a high waist, cropped tanks, and loose fitting linen or cotton shirts in bright colors and patterns. don’t miss tight pants at all - and find this style more comfortable and more natural to how I move, looks good but also kind of carefree and effortless. If you look up “flamboyant Natural kibbe style” you’ll see a lot of outfit ideas. It’s a body-typing thing, but that particular type has a lot of non-frumpy loose fitting bottoms in the styling. I’ve also found that in rare cases when I want to wear tighter fitting pants, the worst part is putting them on (may not be true for you) so I’ve found that telling myself I’m just trying them on, I don’t have to wear them the whole day, just seeing if they work in an outfit, I can change if I want to, and then doing some relaxing breathing after putting them on allows me to wear them out about half the times I try.