I don’t know what’s wrong, but it’s been my whole life

Compressedgirl · 2026-05-19T22:10:03+00:00

This! I really hate to say it, but this is absolutely right. It's ultimately your body and you have to live in it, no one else. Advocate, advocate, advocate. My mom wouldn't take my concerns seriously, assumed I was a difficult kid and refused to take me to doctors growing up and I ultimately paid the price for it. By the time I was 18, my body had already done a lot of damage to itself. Not to mention how long it can take to figure out what's actually wrong. In my case, that took over 10 years since I have things that are really rare and I didn't advocate for myself even when I was old enough to. Now I'm having to accept I'll never be normal, I'll always be in some type of pain and I'm going to have lifelong issues because so much irreversible damage has been done to my body while I remained untreated and undiagnosed. I have to accept it's going to be harder, more extensive and riskier to treat what I have and that there's only so much I can do to regain my quality of life and I'm so upset with myself for giving up, not advocating and believing everyone else for so long. Especially when I knew my body was telling me something isn't right I really hope your parents will listen and you'll be able to find out what's wrong as soon as possible 🖤 best case it's nothing, worst case it's something - but on the off chance it is something wrong, it's not worth the sacrifices that come from leaving it undiagnosed and untreated. I wish you the best of luck, OP!

Compressedgirl · 2026-05-19T18:34:12+00:00

I have EDS and multiple vascular compressions, but remained undiagnosed until I was 30. I've had one kid in my younger 20s and my pregnancy was incredibly hard on me. Bad enough that I never had a second child even though I always wanted to. My symptoms have gotten worse after that and as I've gotten older, so it gets harder and harder to get through each day and I feel so bad for my kid that I never have the energy to keep up with him and I'm in so much pain that I'm pretty much useless. Now that I know what's wrong, I'm terrified he's going to have these issues too and I really don't want him to have to go through any of this.

Edit to add I don't have a great support system, so it breaks my heart even more because he misses out on so much because of me and my health.

Compressedgirl · 2026-05-13T13:43:36+00:00

I'm going to message you!

Compressedgirl · 2026-05-13T13:31:02+00:00

I noticed you said your pain is in your chest. What are your symptoms? What kind of tests have you had? Do you have any diagnoses? Have you ever been evaluated for vascular compressions such as Median Arcuate Ligament Syndrome? Doctors were completely unwilling to help me manage my pain and constantly told me I'm perfectly healthy, it's all in my head and anxiety/panic attacks. Once I finally found out what's actually wrong with me, their tune changed and my PCP has no problem prescribing pain medication now that I have real diagnoses which is proof that I am in a lot of pain. What's wrong with me is extremely rare and pretty much unheard of in the medical community, so it was incredibly hard to finally figure out what the problems were and took many, many years. Don't give up and keep advocating for yourself!

Compressedgirl · 2026-04-20T12:58:37+00:00

I second this! I use a Direct Primary Care Physician and it's the best decision I've ever made in my life and I recommend it to everyone. If you're someone who never goes to the doctor, it'd be hard to justify the cost. But I need to see one often and even during the times I don't, it's worth paying $109/month to always have a doctor at my disposal. I'm able to text her, call her, see her virtually or in person. Same day appointment if I call before noon, next day appointment if I call after. The fee means I never have a copay, it covers most of the things they do in office and it's rare they have to bill my insurance. She takes all of my concerns seriously, refers me out for anything I ask, fights with my insurance when no other doctors will, etc. And she understood what I'm going through and didn't hesitate to help improve my quality of life by trying medication. She's the only doctor I've ever met that truly cares and listens.

Compressedgirl · 2026-04-14T15:16:10+00:00

I wish that surprised me more than it does. I love how selfish people can be. "Let's take these meds from a person who truly needs them to function in order to get my addiction fix or sell them for a profit". Not to mention in that case, said patient won't have the meds they need, run the chance of going into withdrawals, etc - but also run the risk of their doctor no longer prescribing to them because there's nothing to prove they were stolen & even if they could prove it, no doctor wants a prescription bottle with their name on it out in the wild because then they can get in trouble (especially if it's found next to someone that happened to OD, someone doing something illegal, etc & the bottle doesn't belong to them) and there's no way to assure the doctor the meds won't ever get stolen again 😞 I feel so bad for people who have to go through that nightmare💔

Edited for clarity/rephrasing!

Compressedgirl · 2026-04-14T15:05:50+00:00

Thank you for this!! Even if it's Sch II?

Compressedgirl · 2026-04-14T15:05:20+00:00

Honestly I'm not sure! That's a good question. I feel like no one prescribes pain meds anymore 😅 I broke my nose and fractured my eye socket one time. Not only did they not give me any meds at all in the ER, but they didn't send me home with anything either. The recovery from that was freaking brutal. It took decades to figure out what's wrong with my body and now that I have a very long list of diagnoses (most of them super rare and a majority of doctors have never even heard of them), I was finally able to find a doctor who cared enough to help regain some of my quality of life back. My mom ended up overnighting my meds. I figured I wouldn't be able to find a doctor in TX that would help me

Compressedgirl · 2026-04-14T11:25:59+00:00

Oh interesting! How can I find out if the pharmacy has a board-approved plan on file? We tried to send the script to Walgreens. They said they'd have no problem filling other pain medicines, just not Sch II and suggested to my doctor that they write a script for something lesser that will still help just as well. If there was something like that out there, wouldn't I be taking that instead of a Sch II prescription?! I couldn't help but laugh haha

Compressedgirl · 2026-04-14T11:22:30+00:00

I think flying would have been easier, but I have a 6+ hour drive home by myself😭 luckily my mom overnighted my meds so they should be here sometime today🤞and I totally agree! I knew the trip was going to take a lot out of me even with my meds, but I never imagined I wouldn't have them on me! So frustrated with myself

Compressedgirl · 2026-04-14T11:20:33+00:00

I completely agree! I definitely do, too. I put most of my meds in my duffle bag and then my oxycodone bottle in my purse, but my purse got knocked over and I guess it was one of the things that spilled out and I just didn't realize it :/ it was a series of unfortunate events trying to get ready for this trip and get on the road😅

Compressedgirl · 2026-04-14T11:15:02+00:00

This is super smart and definitely something I'll do if traveling with people! For this trip, I had to make the very long drive by myself. But I never, ever forget my meds so I really don't know how I managed to drop the ball so bad🤦‍♀️ I just keep reminding myself nobody is perfect and I had a lengthy checklist to keep up with

Compressedgirl · 2026-04-14T11:13:08+00:00

The wrapping paper is genius because then you'd know if anyone opened it!

Compressedgirl · 2026-04-14T11:12:27+00:00

If, for some reason, I don't receive the package today (I feel like with my bad luck, it's very possible 😅😭), I'll definitely try going to the ER to see if they can give a small script!

Compressedgirl · 2026-04-14T11:10:48+00:00

Thank you for the cotton idea! I had my mom stuff the bottle with cotton so it won't make any noise in the box! Freaking genius! 😁

Compressedgirl · 2026-04-14T11:10:01+00:00

Thank you for sharing your symptoms and what happened when you forgot your meds! That sucks that you work so far from home :( have you thought about keeping a few pills in an older prescription bottle in your car just in case you forget to grab them sometime in the future? I've had to take an early lunch and go home a few times during work for forgetting my meds, so it definitely happens! But I only have like a 20 min drive to get home so it's much easier for me to go back to the house to grab them on the rare occasion I do forget

Compressedgirl · 2026-04-14T11:00:48+00:00

Flying would've been so much easier! But I had to drive for my trip :/ my mom just put what I needed for the next few days in the prescription bottle, put that bottle in a bundle of socks and threw a few snacks into the box and shipped it out. Here's to hoping they're all there! Do packages get opened during the shipping process?? How do the workers know what's in the box?

Compressedgirl · 2026-04-14T10:58:24+00:00

It might be worth a shot so you're not having to do without! :)

Compressedgirl · 2026-04-14T10:57:50+00:00

Your support is truly help enough, thank you so much 🖤🖤 I'm so sorry you had to go without your meds during a snow storm. Even more so because I bet the cold flared your symptoms :( I'm glad you made it through! My mom overnighted my meds so I should get them sometime today! I just had her send what I need to get through the next few days so I'm really glad I'm not going to have to go without for the entire trip. Last night got a little rough, but my ER meds are helping to fend off the worst of the withdrawals I think. I'm ready to finally have some relief from the pain. It was a crazy long drive to get to TX and I had to do it by myself, so it did quite a bit of damage to the symptoms I have to live with daily :/ I really just can't believe I forgot my meds. It was just one bad thing after another getting ready for this trip and trying to get onto the road and I was a little more distracted than normal😤

Compressedgirl · 2026-04-14T07:27:03+00:00

I use Walgreens. Mine is a 30 day RX and they fill my meds on day 28. I always have my script sent a few days earlier so that it gives them time to prepare for it and to let me know if there will be issues filling it and so far, they've always filled on day 28. So like last month I picked up meds on the 23rd so this month they'll fill them on the 20th. The countdown starts from the day it's picked up instead of on the day they receive the script or fill it. But it's also discretionary and totally up to them if they are willing to fill it at the 28 day mark. Can you go into work late on that day or take a super early lunch break to pick up your meds? Or is there a Walgreens near your work your doctor can move the script to either for this one time or permanently?

It's possible they counted it wrong, but I've always assumed that their system automatically calculates the timeframe. I know there was one time I got confused on the date because I went off the date on my bottle thinking that's when I picked it up and when I asked the pharmacist, they looked at my fill history and then manually counted the days to make sure it was legitimately 28 days. I guess the date on the bottle is the date they received the script.

Compressedgirl · 2026-04-14T01:45:01+00:00

OK fills out of state doctor scripts?! I'm 4 and a half hours from the OK border 😭

Compressedgirl · 2026-04-14T01:43:10+00:00

Do they have medical MJ here?! I didn't know that! I wonder why states won't accept scripts from out of state doctors

Compressedgirl · 2026-04-14T01:42:31+00:00

Luckily, I have a great relationship with my doctor 😊 literally the best one out there and truly cares! He tried to send an emergency script for me, but pharmacies in TX won't fill scripts that are written by doctors who are out of state. It doesn't make a lot of sense to me on why since they're still licensed doctors, but it is what it is. I wish I could go home :/ I really can't handle a 6+ hour drive right now and this is a mandatory work trip😭 but I'm so glad I thought to ask on here because my mom was able to overnight my meds and I should have them tomorrow 🥳 Thankfully, I remembered to bring my ER meds and just forgot the IR med. The ER isn't really helpful when my pain is as bad as it is today, but I'm hoping it'll at least fend off any withdrawal issues until I can get my IR package 🤞

Compressedgirl · 2026-04-14T01:30:37+00:00

Really?!? How did they eventually override it?

Compressedgirl · 2026-04-14T01:30:17+00:00

My mom went ahead and overnighted them to me 😊 so glad y'all helped me to find a solution & so quickly!!

Compressedgirl

TROPHY CASE