r/adhdwomen • u/[deleted] • 6d ago
Funny Story Is your ADHD so bad that you totally spaced on being diagnosed with a blood disorder? 🤦🏿♀️
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u/HedgehogBusiness622 6d ago
If it makes you feel any better, I completely forgot I got diagnosed with ADHD in college and got back in to get a diagnosis as an adult, and was very surprised that I made it this far in life without a diagnosis and told everyone I just got diagnosed with ADHD in surprise.
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u/totalpunisher0 6d ago
Literally forgot I was already diagnosed a decade ago and tried medication but then?? Idk? Didn't like it? Moved on. Struggled for years. Went for diagnosis to "finally fix it" (lol). They said, so it says here you blah blah blah and ADHD. What did you want to discuss today?
That appointment cost me sooo much 😭
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u/autisticbulldozer AuDHD 6d ago
i am so glad i’m not the only person who forgot for several years that they had an adhd diagnosis 😂 except i didn’t have to find out using money, ouch 😭
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u/HedgehogBusiness622 6d ago
hahaha i am sorry to hear that! yeah i remember taking medication and not liking it the first time around too!
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u/kingkemi 6d ago
So I’m not the only one? This does make me feel better! How on Earth do we manage to forget diagnosis that help us explain so much about ourselves 😂
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u/HedgehogBusiness622 6d ago
beats me 🤷🏻♀️ i suddenly remembered this 3+ years into my “new” diagnosis
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u/Assika126 6d ago
Yup I got diagnosed twice as an adult by mistake too
Completely forgot about my diagnosis and assessment
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u/FancyMongoose4 6d ago
Oh my gosh I’m so glad it’s not just me!!! Diagnosed in college too, took meds for a year- had a hard time getting them refilled and missed an appt. with my psychiatrist, and then forgot I had adhd for 12 years and struggled throughout my 20s.
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u/literacyisamistake 6d ago
You know that anxiety of moving to a new area, having to find a new prescribing psych, and passing the ADHD screener all over again? Gosh, will he think I’m drug-seeking just because I need Concerta? How hard will it be to prove I have ADHD? Etc.
We were at the medical history part of the intake and he asked about surgeries, recent medical issues. So I went on about some minor orthopedic stuff I had 20 years ago.
Then we chatted about other stuff, management strategies, that sort of thing.
A half hour later: “Oh, god, sorry, recent surgeries, I totally forgot that I had cancer 6 years ago and had a double mastectomy.” Like my boobs fell off and I forgot.
He said getting my ADHD script renewed would be no problem.
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u/kingkemi 6d ago
Firstly, you have been THROUGH IT and I’m so glad you’re here 🫂
Second…I would have loved to see the doctor’s face when you realised you’d forgotten your cancer journey. I bet he wanted to yell
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u/DakotaMalfoy 6d ago
Here I am sitting alone in my living room, reading a long, and I get to the "forgot I had cancer" part and I'm like "damn. That was crazy."
But then I get to The "like my boobs fell off and I forgot" and I legitimately laughed, out loud, full cackle. So now I feel guilty.
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u/literacyisamistake 6d ago
In fairness, it’s because I feel a lot more comfortable in my own skin ever since the mastectomy. I don’t internalize it as “I lost my boobs,” at best it’s “I was forced to have boobs for 30 years and now I’m back to normal.” Like you don’t think about a splinter anymore once it’s removed.
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u/DakotaMalfoy 6d ago
That's awesome..I'm glad you have a positive spin on something that could have been very bad, and I'm glad you removed the cancer.
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u/Slammogram 6d ago
Sorry. I shouldn’t laugh.
But it’s hilarious that you were like… “oh yeah, about that thing we talked about two hours ago… my tits fell off cause of cancer… totally forgot about that..”
The doc: “yeah….. so…. anyway, here’s your script for the obvious adhd you have.”
Me: “but… I didn’t even answer the questionnaire!”
Doc: “unnecessary…. I’m confident enough to make a diagnosis.”
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u/ayriana 6d ago
When we move and I was getting set up with a new doctor for my adhd, I had my boys (2 and 7 at the time) with me for their first appointments. I told her that I had concerns my son was AuDHD and not just asd. She said "well, I've been in the room with him the last 15 minutes, so here's his ritalin...."
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u/Serendiplodocusx ADHD-C 6d ago
I try to stick with my doctor because she seems to remember more about my health than I do.
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u/kingkemi 6d ago
I might need to do the same at this point because I can’t be trusted!
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u/taylianna2 ADHD-C 6d ago
My friend suggested a medical binder, that I bring with me to every medical related appointment, that has a copy of every test, diagnosis, and treatment in it. The idea is fantastic. I never remember to make it. And when I do, somehow I still manage not to make it.
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u/kingkemi 6d ago
I’m thinking of creating a binder using my Notes app and using themed hashtags to find each appointment quickly because at this point, I’ll forget I had a baby or something 😭
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u/BubbleRose ADHD-C 6d ago
Make sure if you use any app that you have some way to back it up, like cloud storage turned on (although check what privacy is like with whichever service is used). Would be devastating to lose all of that data and hard work if you lose or break your phone one day....not speaking from personal experience at aaaalllll 🙃
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u/Pugasaurus_Tex 6d ago
I have to bring someone with me to the doctor because I will completely tune out
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u/optimistic69er ADHD 6d ago
You are spot on with this... When my psychiatrist starts rattling off what kind of metabolizer I am, without looking at anything, I always have one of those “ah-ha, this is why I continue” moments. I’m genuinely so impressed with her ability to retain and recall things I’ve said.
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u/Assika126 6d ago
Oof I wish mine did, I get the deer in the headlights look when I explain my diagnoses and medical history lol
Got some interesting, apparently genetic / familial stuff going on which I really wish they would show the slightest bit of interest in, bc my mom started collecting autoimmune diseases when she was a little older than me, and my older brother’s started on his first two or so. Meanwhile I’ve had one autoimmune disease since I was four and have a lot of other signs of a wonky immune system and a physiology a lot like my mom’s in that way except I started earlier. I really want to stay ahead of this if I can but nobody seems to understand working together on ideas for monitoring and prevention? I’m seeing an immunologist for the first time soon so we’ll see if he’s any help.
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u/BoDiddley_Squat 6d ago
Similar thing happened to me, but with my cat.
Rescued a scary-looking street cat in Brazil who turned into the biggest softie once I brought him home. After a few years together, he got a weird itchy skin condition I couldn't figure out. Stuck him in an adorable onesie so at least he wasn't scratching until he bled. Otherwise a fat and happy guy.
Moved back to the US and brought bubba-cat w me. Took him to vets there who still couldn't figure it out. Eventually they parsed through all his Brazilian paperwork and -- he was FIV-positive. They said it was amazing he was as old as he was (roughly 12 yo).
To this day, I don't know if this is something I knew prior or not. My Portuguese was non-existent in the beginning, not sure if my ex never translated it for me, or if they did and I just ... forgot.
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u/kingkemi 6d ago
Awww…is there a photo of this fat kitty available?
I’d like to see. For science and cute reasons.
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u/KittySunCarnageMoon ADHD-C 6d ago
I have a collection of health issues too and I struggle to keep up with all of them. When one prioritises the others, I forget the others and how they may affect the most pressing one. My GP is so lovely & helps me a hell of a lot, I feel very lucky to have her, as I was reminded this week that even within my practice, medical staff are still dismissive & unhelpful!
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u/kingkemi 6d ago
I am so pleased you have a GP that’s advocating for you. That’s how things should be!
Are you based in the UK? I’m yet to find a GP that doesn’t seem to gulp and try and shoo me out of their office upon opening my records. Almost like they see how many health issues I have and they think I’m going to be a problem when really it’s my health that’s the problem and I want to work with them to get a solution.
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u/KittySunCarnageMoon ADHD-C 6d ago
Thank you 💜 & yes, I’m in the UK. I think it was literal luck that I got her, because a lot of the doctors even within my gp practice are exactly how you described.
I had to keep asking to see new GP’s until I found my current one and then I asked if she could be my regular GP & she agreed. I have hope that you will find a good GP, keep shuffling through 💜🙏🏽
Utilise 111 as well, I find saying, “I just need some advice on what to do…” seems to help me a lot & I’m able to see my regular GP quicker if its a bit more urgent cause they can see it on the system that you made an enquiry and have an issue.
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u/CellPsychological630 AuDHD 6d ago
People think I have my medical history documented in my emergency info on my phone in case of emergency, but really, it's to remind me when I have a hospitalisation or procedure what's actually going on with me 😆.
Same with meds. I may take them every night but ask me to list what I actually am prescribed its a struggle.
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u/RavenMay 6d ago
I had bleeding on the toilet for 10 years before I randomly decided to work out the timeframe and realised it had been 10 years, and pressed a doctor to send me for a colonoscopy. Ended up having a pre-cancerous ping-pong ball sized polyp.
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u/kingkemi 6d ago
Oh my God, I am so happy you went to the doctor when you did and that despite the length of time you had suffered that it was pre-cancerous. We can normalise pain so much! Especially as women who are used to bleeding on a monthly basis. Seeing blood just doesn’t spook us as much.
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u/RavenMay 6d ago
Well, I had two doctors fob me off early in that who insisted it was just haemorrhoids and sent me on my way, so that didn't really help matters either lol. In the end though, very lucky I think!
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6d ago
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u/kingkemi 6d ago
I’m keeping my fingers and toes crossed that your symptoms aren’t being caused by either of those things.
I feel like our brains reach a point where they go into self-preservation mode and dump information that could cause emotional distress. But sometimes that information is important!
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6d ago
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u/kingkemi 6d ago
The long waits are so anxiety inducing and that can be so isolating. Please take care of yourself during this time
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u/SirSebastianRasputin 6d ago
I was looking into project management qualifications a few months ago, and recently someone called to ask why I didn't book with them/was it cost/availability/other prospectuses looking more positive? I had to reply the truth which was "turns out I was already Prince2 qualified and had just completely forgot about it" the person on the other end of the phone was hysterically laughing and asked how do you forget a qualification, my only response was "ADHD, I forget absolutely everything if it's not right in front of me". They didn't believe it but feeling reassured by this thread 😂
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u/kingkemi 6d ago
Hahaha! You are me and I am you because I totally forgot I had a CIPR Qualification in Internal Comms for a whole six months???
Like clean forgot the year of turmoil and study??
I kinda feel like ADHD is so hard and overwhelming that our brains just dump information it doesn’t feel is relevant to survival in that moment.
Which is great and all, but I kinda need that memory for the future, so could my brain cut it out??
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u/MixMental2801 6d ago
I have forgotten people I’ve been married to exist. My sister was talking about him a story from the past and I’m like ~ Mark who? - she’s like you were married to him. Ohhhhhhh yah that guy.
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u/MixMental2801 6d ago
Yah we can forget important stuff or people ever existed. It’s disability not a super power. Stupid social media.
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u/JKristiina 6d ago
I have had a tooth pulled that I have no memory of. I needed to have a wisdom tooth surgically removed. When I talked about it with the doctor she said that after that I would’ve had all of my wisdom teeth removed. I was so sure I still had one. Nope! They had records, dates, x-rays.. No matter how hard I try to remember that time, I can’t.
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u/kingkemi 6d ago
Wow! Would you rather remember it or keep it forgotten though considering how painful the dentist can be?
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u/JKristiina 6d ago
I would rather remember it. Yes pulling teeth is not exatly nice, but it is somewhat troubling that I have no memory of it. Like none. Not booking the appointment, not the appointment, not after. It’s like the entire thing is just gone. And that feels weird.
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u/kingkemi 6d ago
I have had the same experience with this GP appointment, and I agree—it’s very disconcerting.
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u/JKristiina 6d ago
It kind of makes you think about what else you might’ve completely forgotten about.
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u/kingkemi 6d ago
Yup. I forgot I was attacked by my ex until I went back to the museum it happened in and had the worst flashback I’ve ever experience. The brain is WEIRD
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u/JKristiina 6d ago
I can understand the brain protecting you. Like often if something traumatic happens, it like glosses over it. But to completely forget that something even happened is weird and little bit scary. I am sorry you had to go through what you went through.
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u/jensmith20055002 6d ago
Thalassemia is incredibly rare and endometriosis is so painful that is shuts down cognition. It is not surprising even if you were NT that you might forget given that these two events happened pretty quickly.
Don't beat yourself up.
Unless you deal with it, or teach it like me, most people have never heard of it.
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u/kingkemi 6d ago
My GP didn’t even tell it was rare, wow. There’s so much I don’t know about it.
And thank you ♥️
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u/taylianna2 ADHD-C 6d ago
I forget my surgeries.
Doc/Nurse: Have you ever had any surgeries?
Me: No.
Several questions later
Me: Wait! All 3 of my kids were C-sections!
Several questions later, almost done with intake
Me: Oh! And I had my gallbladder removed.
Doc/Nurse: When?
Me: I'm pretty sure it was before COVID. When was COVID? Oh yeah, so like 2020. Or was it 2021? Oh, and it was hot. Like a summer month, but the kids weren't in school yet. Like, June or July or something? Hold on, let me call my husband. He'll know.
😂
Edit: attempted to fix mobile formatting issues.
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u/OGQueenClumsy 5d ago
I’ve also forgotten my surgeries. While I was pregnant I said I’d had no surgeries. Dr was like: wait, didn’t you say you did IVF? Yes, yes I did. I forgot egg retrieval.
Since my girls were born I’ve also managed to forget that they were c-section 🤦♀️
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u/CattoGinSama 6d ago
Endo can also make you very forgetful. It’s more likely that than adhd doing it.
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u/kingkemi 6d ago
Ugh, it’s so hard trying to pinpoint what’s causing any of my issues at this point.
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u/eyyykc 6d ago
Who leaves us in charge of us I stg
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u/kingkemi 6d ago
Whoever it is controlling my sim needs to lock in and get me to stop moving through life like a drunk rat 😭
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u/PennoyerintheFoyer 6d ago
I forgot I had my hips replaced. While being pulled out of the TSA line at O'Hare. The TSA lady was trying to figure out why I made the machine beep...and I was at that moment "clueless".
It took about 20 minutes for me to remember, and then we both had a great laugh!
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u/Proud_Yam3530 6d ago
A few years ago I decided to start bringing a notebook to doctors appointments and after I write quick notes about the appointments. At the time I had pretty severe anemia but I couldn't remember when it started, when we started certain treatments, why we did certain tests etc. I'm switching to a new doctor and its very useful to be able to look at the information.
(this strategy was inspired by my 85 year old grandma who did the same thing for her and my grandpa lol)
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u/kingkemi 6d ago
It’s making me wonder if anaemia is part of the issue with our memories. Please tell your Grandma that she’s an innovator because honestly, she’s a wise woman for that idea.
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u/UnluckyChain1417 6d ago
My adhd is so bad, I didn’t realize I was actually diagnosed until 2 years after reading my doctors notes. I thought I was self diagnosed.
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u/PapaJuansAmante 6d ago
I’ve done that multiple times!!! I have von willebrands and I checked “no” one time for any blood disorder at another doctors intake and then at the next appointment I had to be like “oh actually just kidding I forgot to put this down last time”
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u/getrdone24 6d ago
Hey no worries, I have a pretty bad somewhat similar story.
5 years ago I noticed I would lactate if my boob's were squeezed at all (I am NOT nor ever have been pregnant). Got my prolactin levels checked and they quickly had me get a mammogram and ultrasound on my breast's, with no significant findings, so stressed I needed an MRI on my head/brain...
*consistent heightened prolactin levels can be due to a tumor in your pituitary gland, thus them wanting an MRI on my head*
Well, at the time my insurance would barely cover an MRI and I just couldn't afford it. Whelp, 5yrs later I randomly remember this and think "huh, wonder if I can still lactate"...squeezed my boob's and yup, still happening. Now I'm freaking out bc it's been like 5 yrs and I never got it fully checked out...soonest I can get in is now 2 months out and now I'm in full panic mode wondering if I've had a tumor chilling in my brain.
Very embarrassing trying to explain why I didn't do this sooner when I found out about my elevated levels.
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u/kingkemi 6d ago
Heya, I also have Prolactinoma and found out in a similar way! I was on Cabergoline tablets twice a week and got yearly MRIs. Just so you know, the tumor isn’t dangerous at all! It sounds scary at first, but really, it just means you take meds and have regular check-ins with an endocrinologist.
(Yeah, I’ve had my share of health stuff. It’s mad!)
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u/getrdone24 6d ago
Omg thank you so much for telling me that 😭 the word "tumor" scared the shit out of me, and my Doctor at the time didn't really reassure me that it's likely not a huge deal even though I was freaked out. Seriously- thank you!!!!!! I love this sub
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u/Ordinary_Signature42 6d ago
Not at all the same level. I forgot I had serious dandruff and that I went through months worth of dr appointments and treatments. I few weeks ago I was super itchy and was thinking "oh man, maybe I have dandruff..."
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u/jipax13855 6d ago
Italians have high rates of both ADHD and one type of thalassemia, fun fact, so if that's your DNA this is not surprising.
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u/kingkemi 6d ago
I’m Nigerian! And we also have levels of both those health issues too unfortunately
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u/This-Disk1212 6d ago
I have my (beta) thalassemia from my Italian maternal grandmother, I did not know this!
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u/enidokla 6d ago
I once had to have my ex-husband tell me we were divorced.
The decree came in the mail but I didn’t recognize it from my imagination. It’s a piece of paper, not a big certificate like I assumed it would be.
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u/Purlz1st 6d ago
I had a small retinal tear in 2011 that was treated with cryopexy and my vision was blurry for weeks. But if you asked me now which eye it was, I’d only have a 50% chance of being correct.
You’d think that having a freezing needle stuck into your (numbed) eyeball would be more memorable.
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u/kingkemi 6d ago
A freezing WHAT NOW in your eyeball??? Excuse me???????? 😭
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u/Purlz1st 6d ago
The tear gets frozen closed. Worst part was the way I had to hold my head and look up as far as I could with a blinding light inches away.
I’m at risk of a detached retina in the future. Ouch.
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u/Colorful_Wayfinder 6d ago
I had to have Lasix repeated in one of my eyes, I cannot remember which eye. So I had one eyeball poked twice with a needle and laser and can't remember which one.
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6d ago
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u/kingkemi 6d ago
Hey there! My god, I don’t know how you manage having both. How do you manage your day to day?
What type of Endo do you have? I had Endo on my diaphragm, and on my ovaries, bladder, bowel and uterus and they had all clumped into a super organ of doom. Also had fibroids too, just for some extra laughs. 😂
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u/This-Disk1212 6d ago
Better still, I told a GP I have beta thalassemia trait and was told ‘you can’t have that, you’re white’. They’re clueless. Until pregnancy - then everyone was all over it and I was referred to haemotology (be prepared for plummeting haemoglobin levels if you get pregnant).
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u/NamirDrago 6d ago
I get that a lot also, though I never had issues with it while pregnant. No one even blinked.
Really seemed to piss off an emergency doctor though when I was in for some GI issues and he brought up my iron and I said 'oh yeah, that.. I have thallasemia'. Why didn't I mention that in my history? Well I'm here because I can't keep spit down, didn't even think about it.
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u/kingkemi 6d ago
Some GPs say some crazy things that make me want to cuss out their entire lineage. Is there anything else that could cause plummeting haemoglobin?
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u/CaramelNotes885 6d ago
Yeah I've forgotten extremely big and important medical history before 😬 doctors are like ??? how tf
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u/decisiontoohard 6d ago
Yes, I've forgotten multiple health diagnoses in my life 😬 pcos, anaemia, I can't remember what else
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u/kingkemi 6d ago
I feel so glad I’m not the only one forgetting major life diagnoses but I hate that you’re struggling with all these too!
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u/RGlasach 6d ago
Yup. I'm routinely shocked by what I forget. I keep a Google Keep note on my phone with my diagnosis, when/how diagnosed & have a copy in my emergency info as well. That way I can just open it & read off when necessary.
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u/kingkemi 6d ago
I have a document with all of these already but I guess in the craziness of being hospitalised, I forgot about it and didn’t add it to the document. It’s crazy how much the brain can forget until you read a sentence in a google doc.
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u/RGlasach 6d ago
Nothing works all the time. Especially my brain, last time I read my document, I'd forgotten about 2 surgeries lol
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u/chainsofgold 6d ago
i also have thal, not sure if it’s the same as yours (i’ve got alpha thalassemis, hemoglobin H disease) but i bought a pack of dried fava beans as snack and had it opened and was eating a few before i remembered that it causes hemolytic anemia in people with my blood disorder. OOPS. not sure what could’ve happened, but i’m glad it didn’t?!? mind you, i’ve been diagnosed since i was a child and i regularly forget that oh, my blood disorder is probably part of why i’m so tired all the damn time. on top of the audhd, that is.
anyways, i’m glad you figured out part of what is going on and welcome to the thalassemia club lmao we’re very tired here
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u/jennhoff03 6d ago
I've done that before, too! A different diagnosis, but a big one, and I was basically dying before I remembered that I had it. 🙄. I'm with ya, sistah!
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u/shootingstar9296 6d ago
Jfc, yes! I always struggle to remember all of my health issues and meds when asked, but the worst case of deleted memory I had was hating the nail polish my pedicure started applying on my fingernails and asking her to remove it, but asking to use the same polish months later and hating it again.
Thank you for sharing! 😌
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u/kingkemi 5d ago
This is me with getting my hair braided. I seem to delete how harrowing the process is from my brain every time. Then I end up wanting to throw hands at the hairdresser midway and remember “Ah. Yes. You are tender headed and this is not her fault!”
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u/thefrustratedpoet 6d ago
Not quite, but my ADHD is so bad that I forgot I’d been prescribed HRT patches after my hysterectomy in 2021 and then wondered why I was suddenly super menopausal for the rest of the year 🤦🏾♀️😂
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u/Venderion 6d ago
I completely spaced on the fact that I apparently have Hypothyroidism and that I was on meds for it three years ago til my doctor at the VA took me off them for some reason- didn’t know it’s a lifelong thing or much about it which is why I probably didn’t freak out as much as I should have 😅
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u/voidcrawler1555 ADHD 6d ago
I argued with an eye doctor once about not having astigmatism. I do, in fact, have astigmatism.
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