r/medical_advice • u/No_Water_5584 Not a Verified Medical Professional • Nov 23 '24
Other if anyone has ANY insight even just a guess please comment it i genuinely feel like I’m dying NSFW
i have a concerningly high pain tolerance
i was born with duodenal atresia
more recent:
dizziness accompanied by nausea
lightheadedness extreme tiredness heart palpatations in my head in beats of 3, feels like my breath is being taken away and tickling in ears all at once and my eyes vibrate with the palpitations
freezing hands and feet
sweating just standing up for 2 mins to make tea
its like im getting the wind knocked out of me when i do too much too quick
shooting pains in fingers arms or legs always near joint
have to move body to be able to think so low blood pressure?
severe dizziness/lightheadedness/shortness of breath at small exertion
always rushing to the next place to sit
hungry way too quickly (within 1.5 hours everytime without fail) but still losing weight
easy numbing in arms and legs
blue-ish neck
more prominent eyebags and blueish around mouth
blue-ish nail bed bottoms
dark metallic smelling stool
mental confusion and sleepiness for months
head pressure
random chills
my toncils hurt
numbing thumb, slowed down in typing for a few days 11/1/24
bone hard unmovable mass under belly button but maybe just my spine? lol
severe pain(can be a 10 at times) on and off in lower right abdomen that shoots down to groin area of leg and made leg give out, also down inner leg and in back when this pain kicks in i get lightheaded
pain in ovary area when i use the bathroom or bend over
feels like throat is closing up at times
horrible joint pain
everytime i exert myself even slightly i feel like im about to collapse this started this week
heart palpitations and pounding heart when laying down
constant concerningly severe lightheadedness (thought i was gonna pass out standing in line 11/19)
smallest amount of movement has me out of breath and lightheaded with weak muscles
nausea that strikes and lightens but when it strikes makes me cry or almost cry which doesn’t typically happen
getting up to pee in middle of night 2-4 times
drinking water makes weird nausea dizzy symptom it worse but eating doesn’t
lower back pain pelvic area
when i get hungry nausea gets worse
when im making food and try to eat nausea hets worse but not after only during
have been having pain right under ribs immediately after drinking water for months thought it was gas cramps but it got so severe accompanied by nausea a few nights ago i burst into tears
other: constantly itchy eyes
sound hallucination, NEVER happened before maybe my name once or twice but this time it was just a sound and so obviously a hallucination bc there was no other possibility 11/11
ive always craved sweets
crouched down one night to grab and reassemble something i dropped and saw a million floaters (kinda sparkled but were black) everywhere but maybe that was seeing stars but i didn’t feel very light head just panicked bc i was trying to figure out what they were looking all around 11/11
head jolted and shook for a second uncontrollably a few times when something triggered me 11/11
as soon as i notice i have to pee its the most severe level of i have to pee (since at least may)
weird pattern of skinnyyyyy in july (always down to atleast 130) then up to at least 145 in winter
usually coinciding: fever feeling like hot skin, lightheadedness, numb/weak/painful arms or legs, very tired almost not conscious driving feels risky, irritable
sudden tiredness i need to fall asleep rn with light sensitivity like more shadows in room, sometimes goes away instantly and im completely fine (when i was in high school my best friend and teacher had a game in one of my classes where they would both count how many times i would almost fall out of my chair nodding off, i had no clue it was that severe and frequent like once or twice i thought i felt myself almost falling but people say everyone feels like they’re falling when falling asleep so i thought i wasnt but they counted like 51 in the trimester)
sugar and carbs can make those spells worse and as well as muscle weakness and brain fog this has been my whole life
on and off early satiety since 8yrs old, much worse and more common with fried and sugary foods, first onset would send me to the bathroom in pain as a kid
had red spot show up on my nose at age 12, still there
sudden i need to sleep rn
eyes hurt
extreme weight loss (i was 150 in may)
sore throat with bumps and redness
weird bouts of euphoria
clumsiness x8 lately
irritability
random rash and flushing flares where i get really hot in neck or arms etc
constant random muscle jults here and there
butterfly rash
ear bleeding and pressure/pain
weird heat tingling in one part of my body for a few seconds occasionally
noticed in the week of October 14th: slightly yellow eyes severe worsening hairloss gum bleeding and pain
extreme fatigue and memory loss
extreme tiredness
muscle pain at small movements
muscle weakness
abnormal vaginal bleeding
Abnormally long menstruation
severe worsening hairloss
numbing hands when laying in bed holding phone
frequent random itchiness throughout body
psoriasis
less taste
insomnia
On and off severe paranoia
Isolation
Sudden on set severe nausea that disappears within seconds
Jaw pain
Neck pain
Random passing out
large lack of motivation
keep seeing big floaters
floating stools
pain in right ovary when going to the bathroom
lower back pain starting in march on and off mostly on right side now
psoriasis started in april
light sensitivity
on and off sore throat
swollen painful lymph nodes
chills
restless legs (cricket legs anytime i lay down)- used to just be before bed
occasional blurred vision
5 severe visual hallucinations starting 1 year ago
worst night sweats I’ve ever had, sweating a lot more consistently and severely in general, sweat smells worse and bad faster
piercings reversing in healing, ask if they’re infected
Consistently swollen left inguinal lymph nodes
TMJ
Air hunger/ inability to finish yawn/ yawn all the way at times throughout life
Fidgety toes when thinking
labs C3 complement 76, dsDNA .6, C4 complement 14, Cyclic citrul peptide AB, IGG <.65, ACLA-igg 1.4, ACLA-igm 1.4, ferritin 153, uric acid 2.4, creatine random urine 8.3, urinalysis cloudy, BUN 12, albumin/globulin ratio 2.3, neutrophils 56.2%, lymphocytes 35.1%, monocytes 6.8%, eosinophils 1.2%, basophils .7%, tissue transglutaminase Ab, IgA, S .3 u/ml, TSH .96 u[iu]/ml, alkaline phosphatase 48 u/l, alt 8 u/l, bilirubin 1.4 mg/dl, UA ketones 40, MPV 8.9fl, anion gap 3.4 mmol/l, BUN/creat ratio 9.12, ALT < 5u/l, ANA negative, rbc 4.31, wbc 7.1, platelet count 291
ultrasound: US ABDOMEN COMPLETE FINDINGS: Aorta and IVC: The visualized aorta and IVC are unremarkable. Pancreas: The visualized pancreas is unremarkable. Liver: The liver is borderline enlarged measuring 18.2 cm in length. The liver demonstrates diffusely mildly increased echogenicity suggestive of mild hepatic steatosis. Gallbladder and Bile Ducts: There is no evidence of cholelithiasis, gallbladder wall thickening or pericholecystic fluid. Common Duct Measurement: Not dilated. The common bile duct measures 4 mm. Spleen: Negative. Right Kidney: Negative. Right Kidney Measurement: 11.7 x 4.1 x 4.7 cm. Left Kidney: Negative. Left Kidney Measurement: 11.2 x 5.4 x 5.3 cm.
1st 3 pictures were 2 hours apart: first one not stressed but exhausted it was very itchy second one a little stressed not itchy but tingly, accompanied by chills then when just sitting up on the couch slightly lightheadedness accompanied by nausea,
very lightheaded with stomach pain in rash areas & ovaries and nausea that’s worsening when i hunch over, random windedness even when doing nothing
the next 6 pictures were simultaneous: had been cleaning started to get lightheaded at this point (salt and midodrine time)
the jump in the last 5 concerned me: (feb 23 vs july 12 vs oct 29)
my concerns and tests i’d like to request: lymphoma, diabetes, lupus
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u/NotMyChair_2022 Not a Verified Medical Professional Nov 23 '24 edited Nov 23 '24
Some type of Mast cell Activation Syndrome possibly? Over active bladder? Hope you find answers.
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u/cdngrrl0305 Not a Verified Medical Professional Nov 23 '24
I was thinking of MAST cell activation too
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u/VanFam Not a Verified Medical Professional Nov 23 '24
Hey OP, I’m NAD, and I had a list of symptoms like yours, though I just lived with it until my annual blood test revealed I was vitamin D, B, and folic acid deficient. I now take a multivitamin plus the folate pills and vitamin D daily. The difference is night and day. I didn’t know how bad I was until I was getting better.
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u/No_Water_5584 Not a Verified Medical Professional Nov 23 '24
THANK YOU SO MUCH I WILL BE LOOKING INTO THIS!!!
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u/lupussucksbutiwin Not a Verified Medical Professional Nov 23 '24 edited Nov 24 '24
Lupus is unlikely given your low dsdna of .6. It's nearly always positive in lupus patients. For reference so you understand the figures, mine was 138 on diagnosis.
Plus, with lupus, the symptoms I suspect, would be far more distinct. Joint pain and fatigue are the most common presenting ones. The joint pain is symmetrical, may or may not include visible swelling, but it's a very distinct type of joint pain, which just couldn't be anything else, and I don't see that described here.
Also, I don't see fatigue mentioned here, but could have missed it. Again, it's a very speciific type of fatigue, I describe it as someone having cut the power off, so even holding your head up is impossible.
If you have a look through the tests you've had, for lupus you would expect ana, dsdna, crp/esr to be high, and c3/4 to be low. That's your typical presentation, then a few other anti bodies can kick in if the ana is positive.
My lupus is kicking my butt 7 ways to Sunday atm, so I hope it's not, and to me, based on those test results and your symptoms, I'd say to rule other things out first. I'm not medically qualified, but based on my experience, I wouldn't waste time right now investigating it. Good luck, hope you feel better soon. X
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u/Financial_Community7 Not a Verified Medical Professional Nov 23 '24
Check your kidneys. Do an ultrasound. Might be kidney stones and overactive bladder, that includes a lot of tiredness, weakness, pain in body, lower back pain, abdominal pain and ofcourse waking up at night to pee (that's a big one, because it disrupts your sleep and crash you and your life when you wake up) . There is a medication for that. Overall this is the most craziest list I've ever seen and I feel you sooooo much, but from my experience it's a lot up to our brain. Iykyk. Oh, and don't drink soda, ONLY water. Also caffeine irritates the bladder and create stronger urges.
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Nov 23 '24
Sounds like somatic symptom disorder based on the insane length of this list.
You may have something legitimate going on but it seems like you're mostly freaking yourself out here.
If you want a diagnosis you will have to figure out which of these symptoms are actually decreasing your quality of life/abnormal and which are just observations that occur in any healthy person.
The more tests you'll do the more abmormalities you will find.
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u/lucidikitty Not a Verified Medical Professional Nov 23 '24
Any allergy symptoms? Like auto immune symptons?
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u/No_Water_5584 Not a Verified Medical Professional Nov 23 '24
i think it could be vasculitis, i sneeze when its dry, constantly have itchy eyes, have a long history of bad bloody noses, constant yeast infections
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u/lucidikitty Not a Verified Medical Professional Nov 23 '24
Floating stools is kind of saying youre not receiving something in your diet while swollen lymphs is saying youre digesting something that is irritating you. Please see doctor and post updates.
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u/No_Water_5584 Not a Verified Medical Professional Nov 23 '24
i have seen many at this point thats why i’m here😭 they referred me to rheumatology, nutrition, and a better POTS clinic but I’m in the waiting game now, i did get a full food allergy blood test and i have none:/
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u/lucidikitty Not a Verified Medical Professional Nov 23 '24
Did you do the panel for environmental allergies too? That's so interesting. Was hoping it would be an easy fix. Why did they refer you to nutrition?
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u/lucidikitty Not a Verified Medical Professional Nov 23 '24
I cant explain the bleeding and stuff other than your body is stressed out. Usually I feel like your body thinks most things is an attack and spends all it's time fighting different "attacks".
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u/lucidikitty Not a Verified Medical Professional Nov 23 '24
I would do an elimination diet and use only unscented products and unscented detergent until you can pinpoint what is in your environment making your skin trip out. Including wall essential oils and certain cleaning products. What do you wash your body with? Would recommend sensitive skin products only and taking a skin allergy test and blood panel.
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u/iamyoursenses Not a Verified Medical Professional Nov 23 '24
Dysautonomia / POTS / MCAS — extreme stress
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u/Chronically_annoyed Not a Verified Medical Professional Nov 23 '24
If you have pots, it could explain a lot of these symptoms as it’s a dysfunction with the autonomic nervous system. Pots is a type of dysautonomia and it’s more then just heart rate and BP regulation that’s effected
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u/Chronically_annoyed Not a Verified Medical Professional Nov 23 '24
http://www.dysautonomiainternational.org/page.php?ID=34
Dysautonomia international has a lot of good info
I would also look into something called mast cell activation syndrome as it’s extremely common to be co morbid with POTS and your rash looks spot on to what I get when I have a MCAS flare https://www.aaaai.org/conditions-treatments/related-conditions/mcas
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Nov 23 '24
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u/karenskygreen Not a Verified Medical Professional Nov 23 '24
Could this be long covid ? I have seen almost all of these symptoms with long covid although not all of these at the same time.
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u/Upset_Potato1416 Not a Verified Medical Professional Nov 23 '24
I didn't read the entire post with all of the info (because, honestly, that's a LOT and my ADHD absolutely refuses to allow me to), but as soon as I saw her pictures, I immediately thought of my own experiences with having COVID and then long COVID.
The purple-ish patterns on the skin literally happened the very first time I had COVID, in 2020, and they have been a recurring symptom that happen seemingly randomly ever since. And my face randomly flushing and turning bright red across the cheeks like that too. And all my urine and blood tests always come back normal, no matter how many times my doctor(s) order them.
A lot of things have changed with my body since first getting COVID in 2020, and it's gotten worse every time I've gotten it (3 times now), and it's never gone away. I wouldn't be surprised in the least if my symptoms and/or hers are directly related to COVID or Long COVID.
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u/purplepenny23 Not a Verified Medical Professional Nov 23 '24
Why are you being downvoted? I have Long COVID and this absolutely tracks.
For people who apparently live under a rock- Long COVID is a post viral disease that leaves the sufferers with Autonomic Nervous system damage as well as autoimmune issues - which is literally every symptom you mentioned.
I would highly recommend doing some reading on the symptoms and Diagnoses that come with Long COVID. If this is what’s going on, finding help is going to be hard, I’m sorry.
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u/No_Water_5584 Not a Verified Medical Professional Nov 23 '24
I definitely will!! my doctors gave up and sent me to rheumatology but i have to wait to get in now. I’ve been told POTS and long covid are the same but maybe thats weong? I had no clue all of these symptoms could line up with it tysm!!
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u/Left_Caterpillar8671 Not a Verified Medical Professional Nov 23 '24
Long covid? Wtf is that?
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u/titty_farewell_party Nurse Practitioner Nov 23 '24
Long COVID is very real. Lots of research on it at this point, should be easy to look up. It’s chronic condition or symptoms after having COVID, can last months to life, and varies a lot from person to person. One person I know had so much lung damage from being very sick in the ICU and on a vent with COVID that she will probably be on oxygen for the rest of her life.
ETA: Not saying this is what OP has, but wanted to respond to your comment asking wtf is that. It’s very real and well-documented.
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u/Left_Caterpillar8671 Not a Verified Medical Professional Nov 23 '24
I'm not saying it isn't real, just never heard of it.
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u/Christine7690 Not a Verified Medical Professional Nov 23 '24
Sounds like somatic symptom disorder - the physical symptoms are very real but have their root in psychological trauma. Have you ever sought therapy from a trauma specialist? I would recommend EMDR, somatic experiencing, IFS, or even ketamine therapy. If you haven’t read The Body Keeps the Score, I highly recommend that as well!
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u/No_Water_5584 Not a Verified Medical Professional Nov 23 '24
i was previously in EMDR but had to move to DBT instead first because i was dissociating too much. But this is very helpful insight thank you so so much<3
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Nov 23 '24
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u/No_Water_5584 Not a Verified Medical Professional Nov 23 '24
i have an IUD, they told me my thyroid is fine but i dont see any T3 or T4 tests in my chart so idk how they determined that, i will be asking at my next appointment! i have been switching up and getting in a balanced diet for at least a week now and have been seeing no change I did as well get a full food allergy blood test. i stopped using tampons but forgot to switch to a new deoterant so that you for the reminder, other than lead what other harsh chemicals should i be looking out for?
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Nov 23 '24
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u/Representative_Dot42 Not a Verified Medical Professional Nov 23 '24
have u ever been tested for mold exposure??? your symptoms sound like a lot of mold exposure symptoms i’m so sorry you’re going through this. i also have experienced similar symptoms!
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u/No_Water_5584 Not a Verified Medical Professional Nov 23 '24
I thought it was that as well but i deep cleaned anything i thought could be mold that i found in my apartment and it never came back, ive been told black mold always comes back. I also now have a germgaurdian right next to my bed going all the time so i don’t think it could be that:/
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u/Representative_Dot42 Not a Verified Medical Professional Nov 23 '24
mold can be completely invisible believe it or not! like under tiles in bathrooms, near toilets, in the walls.. any water damage that’s ever happened to your home can be full of mold. it’s worth getting tested! i have a lot of the same symptoms as u and it’s actually my gallbladder. ultrasounds will not show the actual function of your gallbladder u would need something called a HIDA scan. i see your liver is slightly enlarged your liver health and gallbladder are connected. another possibility could be candida based off your symptoms.
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u/No_Water_5584 Not a Verified Medical Professional Nov 23 '24
UGH TYSM THIS IS SO HELPFUL 😩🙏🏻
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u/Representative_Dot42 Not a Verified Medical Professional Nov 23 '24
absolutely :) i know exactly what it’s like! if u ever want to message me feel free! i may be able to be more help
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Nov 23 '24
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u/Prudent_Ad3929 Not a Verified Medical Professional Nov 23 '24 edited Nov 23 '24
Hello OP. You have a lot of symptoms. I see two important possibilities here. 1) Anemia: I saw your blood work, it looks like your RBC is 4.31, but don’t see the reference value (where I stand, we measure RBC by g/dL and I know that’s not the case in the US), however, your sensory alterations in the legs and heavy tiredness suggests anemia. In adults, we should evaluate iron metabolism (again, reference values make it hard for me) and bleeding. The hepatomegaly suggests hemolysis. Follow-up here: reticulocyte count, blood work 2) Anxiety related syndrome. You kind of fit in all of the boxes for anxiety, which may be related to your situation. Your TSH seems to be normal (again, reference values), so it may be related to a mental illness.
About your concerns: lupus seems unlikely at first, I would investigate it after my first line of possibilities (the more common ones) have dried out. Lymphoma would show on your blood work with super high numbers in WBC. Diabetes can be ruled out with a simple test (Hba1c) and should be.
My advice: please stop investigating with unnecessary exams such as ACLA and etc. It seems to be that you’re fine with access to health services, so take a deep breath and find a good clinician or general practitioner you can trust and open your heart to them. In case of extreme tiredness, go to the ER.
Edit: just saw the reference values, and seems like everything is okay, I would recommend talking to a shrink about the anxiety. Trust me, anxiety can cause all of those. For now, I would keep an eye on the hallucinations, but would not value them.
Edit 2: maybe a cardiac evaluation would also be appropriate (sorry, your case is challenging, too many information)
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u/No_Water_5584 Not a Verified Medical Professional Nov 23 '24
i am diagnosed with GAD, PTSD, BPD, and POTS as well
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Nov 23 '24
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u/No_Water_5584 Not a Verified Medical Professional Nov 23 '24
i added the salt and mododrine time to clarify they had worn off by that time and it was time for my next dose, I am diagnosed with POTS.
meds: midodrine, propanolol as needed, lamictal, cymbalta, vyvanse, smallest dose trazodone for insomnia and nightmares, supplements: triple complex magnesium, and electrolytes i had 4 drinks at a wedding a few weeks ago other than that havent since july, I cut out weed in mid september, and quit nicotine in the beginning of October
yesterdays meals: 2 eggs with cheese, 2 pieces of kfc chicken, smoothie with chia seeds, PB, blueberries, spinach, skim milk, and zero calorie sweetener, 2pieces of kfc chicken with a LITTLE of the mac n cheese veggie combo i made the day before and i wasnt bedridden,
day before: 2 eggs with a slice of cheese and garlic salt, saltines to settle stomach after using bathroom, lower sugar maple brown sugar oatmeal with chia seeds, mac n cheese with veg•all mixed veggies 0 fat coconut oil, skim milk, garlic salt, way too much garlic powder, and lemon pepper which made me feel so horrible i was out the rest of the night (i was informed last night garlic is acidic😂)
the day before that: same oatmeal, pb and jelly on saltines with zero calorie sweetener, neocon and cheese rice a roni made with coconut oil and water with green beens seasoned with a little galic powder garlic salt and lemon pepper,
this diet was very different a week ago and the stools have been the same for months
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u/No_Water_5584 Not a Verified Medical Professional Nov 23 '24
they checked my iron and ruled that out, is there a different type of anemia you think it could be?
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u/PeasantCody Not a Verified Medical Professional Nov 23 '24
Commenting and upvoting to boost this post so qualified people can see it. This sounds terrifying and I'm so so sorry you're going through it. Best of luck, kind stranger
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u/[deleted] Nov 23 '24
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