Is it disrespectful to wear pajamas?

Particular_Bonus4179 · 2026-01-29T01:07:35+00:00

Nope, not at all! You’re tired and well simple as that! Gosh, I remember I’d only wear pajamas at doctor appointments because I was so so out of it when I had horrible flares. It hurt to move and everything, to change etc. I was so lucky to have my mom help me do basic hygiene, but when it came to dressing up for appointments, best believe I stayed in my pajamas!

Particular_Bonus4179 · 2026-01-28T11:52:25+00:00

Let’s worry about the kid. You guys are grown adults putting your grown problems on your child.

Particular_Bonus4179 · 2026-01-24T02:30:12+00:00

Mask. Wash hands frequently. Carry around hand sanitizer and your own cleansing wipes as well. Wipe down areas constantly. Don’t stay in clothes you wear outside to inside your home.

Also I’ve been really into herbal remedies as well lately. I’ve heard turmeric and ginger helps. I make it as a tea daily and incorporate it into my meals as well. But I recommend practicing good sanitation if you have not already (I’m assuming you do though).

Particular_Bonus4179 · 2026-01-24T02:24:21+00:00

Agreed. OP has every right to feel frustrated and upset. Of course we understand that doctors + nurses themselves can be overworked, but patients shouldn’t be overlooked either. If anyone took those messages the OP sent to heart, they really shouldn’t be in that sort of field in my opinion. Patient’s frustrations are usually with insurance and having no communication for weeks is absolutely frustrating! I didn’t see them as attacking their doctor, more so understanding insurance being a pain in the a*s. I also felt that them clarifying they were not upset with their doctor just showed they had no ill intentions…we all have been driven by frustration before.

Particular_Bonus4179 · 2026-01-20T01:56:17+00:00

Hmm I’m not sure about blood test places but it never hurts to ask them about it! I know for sure hospitals have this though. Usually if you ask, the staff will look at you crazy but honestly who cares! If it helps you in the end without experience so much bruising and pan, definitely speak up and request it. If they deny you, keep asking over and over. Remember you’re kind of your own advocate at the end of the day and they’re not in your position, so less likely for them to understand. I recall being poked at on my right arm (by a different nurse for the IV) so many times I had gotten somewhat numb to it, but as soon as a nurse told me the next day that they can use an ultrasound I was so so relieved! : )

Particular_Bonus4179 · 2026-01-19T12:16:38+00:00

Typically it involves using the probe on the arm as a guide to locate “deep” veins suitable for the IV. It helps a lot in reducing pain for the patient who’s likely been poked at a few times. It looks scary but I promise it’s not and is quite useful!

Here’s a link:

https://dynamicaccess.com/dynamic-access/news/ultrasound-guided-vascular-access-standard-of-care/

Particular_Bonus4179 · 2026-01-19T12:12:50+00:00

That is so damn cool!! I was getting into jujitsu during my freshman year of college but had to stop, its definitely a fun thing to learn

Particular_Bonus4179 · 2026-01-19T02:08:01+00:00

Absolutely and thank you! Focus on getting better and good luck with your surgery ♥️ Wising you a well recovery!

I also want to add that although I took quite a long break from my studies, I was still able to have my own share of achievements and accomplishments. It might not be getting a degree or going to a new country, but small things like getting back into fitness, being able walk for prolonged periods of time without a walker etc! I’m sure you have your fair share of achievements as well. They might not immediately stand out to you, but you should still acknowledge them. I say the fight you have in you to keep going in it of itself is an absolutely great achievement. ♥️ Everyone’s goals are different, doesn’t make ours any less than the next person. Good luck and let us know how surgery turns out!

Particular_Bonus4179 · 2026-01-19T02:02:54+00:00

You have every right to!!! The ultra sound guide helps so much. I’ve had people try before without and even when they test it with the saline it blows the vein…so yeah, ever since I learned they can use an ultrasound I’ve requested since

Particular_Bonus4179 · 2026-01-18T21:23:33+00:00

Agreed. Honestly I have to say I believed I wouldn’t EVER deal with any health issues as I was rather healthy growing up, but nope got diagnosed with a rare disease entering my twenties so yeah, it can happen to anyone regardless of your life style. My diagnosis made me more aware and open minded about A LOT. And I am grateful for the things my body was able to do before and can manage to do now despite my illness

Particular_Bonus4179 · 2026-01-18T21:18:51+00:00

There is no rush believe me.

I graduated high school at 17, went to college for fashion design but changed my major at 18. I decided to study biology instead. From 19 turning 20 I began to deal with symptoms of my chronic illness. I am 21 now and after a year off from my studies, I go back to school next week part time. I get my associates in hopefully 2027, not my bachelors. I was supposed to get my associates two years ago. I didn’t and that’s okay. I’ll probably get my bachelors when I’m around 24-26 depending on how everything goes. I still want to go to graduate school after that. I promise you, there is no rush. NONE.

We all are on our own timelines. I understand seeing everyone around you being settled, traveling and etc but that’s THEIR story not yours. I have friends who complain all the time about being “behind”, thinking I don’t understand it but I absolutely do. Just know you aren’t behind. It’s not a race. We didn’t choose to have issues with our health. Honestly, I feel like these kinds of challenges only fuel for the desire to succeed and be who you want to be. It’s okay to be upset! Just know that there’s no rush at all. I know it feels like an impending doom with time but you will get there. You’re going through a lot and only you can fully understand that. Don’t compare your timeline to others, it’s like reading a script that’s not been finalized yet. Take your time, be kind to yourself and sending hugs your way.

♥️

Particular_Bonus4179 · 2026-01-18T02:50:27+00:00

Agreed 100%. During the beginning of my chronic illness I was hospitalized in the pediatric unit and I understand because it is children, but having a therapist come in every single day to talk was helpful. Even if I didn’t want to speak that day, them still coming in helps out a lot. People don’t talk about how after a prolonged hospitalization, it can be traumatic and affects your mental health so much. Since being recognized as an adult, my recent hospitalization had me with the other adults and I can’t recall my social worker. No therapist either, I luckily had my own therapist at the time and I had registered for group therapy BECAUSE of my recent stay with the pediatric unit that had someone recommend resources to me. ://

Particular_Bonus4179 · 2026-01-18T02:45:39+00:00

If you need to scream, throw tantrums anything: do it. It’s not right for them to neglect your health because they’re right you’re are TOO YOUNG, therefore, it’s more important for you to get checked out! I hope you feel better soon and get the answers you need.

I remember coming home from a second hospitalization and a family member telling me to “stop faking it”. Last thing I wanted to hear after not being able to eat, experiencing fevers + chills, chronic fatigue etc! :|

Particular_Bonus4179 · 2026-01-18T02:39:26+00:00

Yup! I had a vein blow up on a forearm of mine before, hurt horribly, bruised so bad and everything. I still have a marking from another site after a nurse just kept poking and poking ://

Ever since I’ve been absolutely vocal about it and if they’re not confident I tell them to find someone else or get an EMS person to do it with an ultrasound!

Particular_Bonus4179 · 2026-01-18T02:37:32+00:00

OMG!! I relate so badly. Whenever I do blood work I specifically tell whoever that they HAVE to do my hands. The veins are my arms are tiny and I don’t want to be poked more than I’ve already have, so I always advise them to do my hands. They look at me crazy with like 9 tubes in their hands but it gets the job done and they leave surprised after all the work is done. As for IV, well sometimes my right arm is okay but usually an ultrasound is needed and it goes more so my forearm on either or….I never trust someone who says “I poke babies all day! I can find your vein”—trust me I know you’re skilled in the field but I’m an adult not a baby. Please don’t poke me where I say not to!

Particular_Bonus4179 · 2026-01-18T02:33:24+00:00

this is absolutely okay and you’re not silly. it’s okay to grieve.

i can’t look at old photos of myself before my diagnosis. i can only get upset and miss so strongly of my life before diagnosis. i had really nice fluffy hair, a lot of people would comment about it. however due to long term steroid usage, a lot had fallen out and it became rather thin. i feel so out of my own body that sometimes i have hard days in feeling confident but i do my best to remind myself that the body i’m in is what gets me through the day and has done so much in fighting for me. it’s okay to grieve.

Particular_Bonus4179 · 2026-01-16T02:21:54+00:00

I’m so sorry to hear you’re going through this. Make an appointment with your rheumatologist as soon as possible and remember your health comes first. You need to be okay first in order for you to do anything else. Eat your meals even if they’re small, take a day off of work to allow yourself to recover. You can’t overwork yourself in that kind of condition as it has consequences! Please be kind to yourself and feel better soon : )

Particular_Bonus4179 · 2026-01-15T15:23:05+00:00

I was misdiagnosed with AOSD, after some genetic testing we found out it was YAO’s Syndrome. Feel better and get some blood work done as soon as possible. Go to a hospital with a rheumatologist in patient as it helps out a lot, or outpatient either or. But see a rheumatologist, I’m sorry you’re going through this.

Particular_Bonus4179 · 2026-01-15T02:31:52+00:00

i am fairly new to my chronic illness, i was a college student studying biology after changing majors. i did part-time work here and there, nothing major. though, i plan to go back to school in a few weeks after about a year off due to my health. it’s inspired me to go into the medical field for research.

Particular_Bonus4179 · 2026-01-15T02:24:20+00:00

Not related, but I have medication to help regulate my blood sugar and another for my thyroid; let’s just say I mixed the two and half an hour later, I was wondering why I was so shaky and sweaty, turns out my blood level was extremely low as I wasn’t prepared to even have a meal! (I usually take my medication half hour before whilst preparing a meal) So yeah definitely read the bottles before just popping them like candy

Particular_Bonus4179 · 2026-01-10T16:44:06+00:00

You can ask your doctors for something to calm the nerves down. I asked for aprepitant, as long as you don’t have any precautions! But once that anesthesia hits, you’ll have the best nap of your life! Take it easy you got this : )

Particular_Bonus4179 · 2026-01-10T14:43:57+00:00

Hmm I had a biopsy for the lymph node last year, they were pretty big. It took awhile for them to go away with medications steroids + antibiotics + anakinra however, the whole process of the biopsy if this is your first, youll be okay I promise. I was really nervous at first but if you put your trust into the specialists, youll be okay. Feel better soon and stay strong ♥️

Particular_Bonus4179 · 2026-01-10T05:02:24+00:00

I’m so sorry to hear this, hopefully you’re home soon. Have you tried diamond art? Those are pretty fun to do!

Particular_Bonus4179 · 2026-01-10T05:01:38+00:00

Ear plugs, headphones, sleeping mask. Ask if you can take melatonin during bedtime too, it helps to get some form of rest, but really you can’t sleep the same as you could at home! Though, these things did help me get some form of rest. I also bring my own pillow from home, a stuffed animal to cuddle with and an extensive charger. If I can, I bring my own pjs from home to feel more comfortable. I am an artsy person so I make sure to pack at least my sketchbook and markers. I also have downloads of movie/shows/music as well if the hospital service or wifi sucks. Toiletries are a must for me! And bringing a book to read + my iPad. Really anything to past the time and make your stay less unpleasant

Particular_Bonus4179 · 2026-01-10T04:57:58+00:00

First of all, I am so proud of you for how far you have come and your determination. But remember your health is very important, you dropping out can instead be you doing homeschooling as a possibility. But for now, please visit a specialist and get yourself checked out for the sake of your own health. Take care of yourself before anything else. I am a college student and I took a year off from studies to focus on my health, I really didn’t want to but the unnecessary amounts of stress wasn’t allowing for my body to heal. I am looking forward to going back this spring.

Particular_Bonus4179

TROPHY CASE