u/Nirhida

Hello, all.

I want to hear from people who live for years with autoimmune and other chronic conditions. Or from doctors.

How do you read your results?

I technically have about 10 years of experience but in reality I am an adult only for five years now.

It has come to my attention that I have a lot more to learn to feel secure in my ability to understand my conditions and in my ability to communicate with my doctors.

Like everyone here I have seen a lot of "unprofessional" doctors. So I do not fully trust them and I don't want to. I want to be able to understand everything and collaborate with the doctors.

So when you get your results in your hands, what do you do?

Is there a site or a book that I can find what every test mean? What tests are important for what. How do they impact one another.

I know that some tests may seem normal independently but looking them together might paint a different picture.

I see them all the time on videos especially from asian countries. I am not sure how they are called.

My mom has the annoying habit of Washing just her shirt or a pair of pants. On the 6kg washing machine with a full cup of detergent. It drives me crazy the waste of energy and water and detergent and the damage from the detergent.

I was wondering if those mini ones are worth it. Do they work? I mean are they able to clean dirty clothes or are they only for a refreshing? Are they more eco-friendly? Do they use less electricity?

Does anyone have any information? If you have one how do you feel about it?

I am so confused and Tired. This Tuesday I told myself and my therapist how positive I am. I felt so great that I had the realization that I felt great!

I had depression for the majority of my life and now that I am in "remission" for the depression it is important to notice when things go well.

Don't get me wrong, psychological I was great. I was still in physical pain I did things pain comes with doing things, it is understandable.

Then Wednesday I stayed in bed cause of pain and yesterday the same. And I was so sad and overwhelmed with the realization that I didn't have any help in that. I was alone and worst I was in an invironment that thought I was Lazy, too emotional and aggressive.

Today, I went to the doctor. I managed to make an appointment and to make it there.

Note: Not Reumatologist I went to a physiatrist. My current pain is not lupus I think.

Only for the doctor to not ask me anything except how old I am and then comment that "whatever my knees have they don't have it because I am too young for them to have anything" literally her words (translated from my language)

She then told me to take antianxiety medication and shoot me out. I stayed told her I was not satisfied with her answer. She didn't ask me where it hurt when it hurt, how much, how long... She didn't ask me anything. At this point I tried to tell her. I told her I have lupus and Sjogren and that the reumatologist says this is not due to lupus. I tried to tell her that I am active and I am doing things and only this week I am inactive due to the pain but she insisted it is in my head or that I have atrophy due to me staying in bed. I am pissed and overwhelmed.

At the same time, last week I hurt my wrist and went to an orthopedic with recommendation from my personal doctor. The orthopedic told me get an x-ray then told me to take an anti-inflammatory and let it move freely. I asked about chores and he told me I can do whatever no limitations only to be wary when it hurts I did that I texted him the results of the x-ray and asked if That is still his recommendation if I should go see him and do something else. He texted me back "ok". Just "ok". Also he told me the x-ray showed calcific tendonitis. I just thought to look it up. Internet says the exact opposite. Well internet agrees with the anti inflammatory drug, at least.

I don't know what to do. Should I go get a second opinion on my knees? Should I just suck it up go rot in bed cancel everything die from starvation and then get up as a zombie next week and try to peace me back together?

I am so tired and so overwhelmed and I feel sad and I wanna cry and give up. Over a stupid wrist and 2 knees. I am sure there are better solutions.

Also you know I am tired of reumatologist saying It's not my problem then, orthopedic and ever other doctor saying it's/you're reumatologist problem

TLDR: I don't have real help around me but I want a list of things that I could ask from friends to help me navigate this time without overexerting myself.

I am mid 20s no Job. I saw yesterday a video that a woman said how painful it was when she had to put her life back together when her body was falling apart and seeing all the people who said that they loved her stand and watch without doing anything to help. I felt that really deeply.

Before I fall back into a depressive episode I want to give the people in my life a chance to help me.

I am not diagnosed with hypermobility I have lupus and a few years back a reumatologist I was seeing told me my knees hyperextend and I need to look it up. I couldn't continue seeing her and every doctor I have seen since tells me I don't have h-EDS and gets annoyed with me when I try to explain that I didn't ask about h-EDS just hypermobility cause I am in pain that nothing else explains so far.

I think I need to see a physiologist and maybe start using mobility aids like a (hinged?) knee brace.

I don't have money and I don't have the energy to do more research. I can't find on the Internet if the mobility aid shops sell braces and I don't drive so I can't just hop on the car and go from shop to shop. Walking would be torture and there are no bus routes that are of help. Also due to lupus I am not allowed to go outside for most of the day and anything but car would be too much time.

I am not sure if anyone in my life would take the time to actually help. The only people who actually seem busy hovering over me "help" with what they think would help and are not willing to hear me out or just offer money!

But either way I want to ask I just don't know what to ask them. I think that if I am analytic about my ask they will be more willing to help.

I am so sorry for grammar and syntax. I have dyslexia and I don't have the capacity to triple check how I write right now. I just hope it is readable enough!

I figured recently that I am really ashamed for my fear of teenage boys. I am afraid of a lot of people but for some reason these kids that are 10 years younger than me I can't accept that I am scared of them!

Edit: I wanted to clarify that I mean in groups that I may see on the streets or other public spaces. Most people Got that and It makes me happy to see I am not alone and to read the reasons you have figured out! Thank you all for responding you are warming my heart!

I was looking at my old school pictures the other day and my mom came to the room and said "ohhh that's my baby girl, look how cute you were" but she was looking at my brothers school photo and when I pointed that out she said "where is he I don't see him anywhere. Is this him?" No, that was a random boy.

It just dawned on me that it may be an early sign of dementia? She is not that old though! She is in her mid 50s and my brother and I are in our mid to late 20s.

Is that something that might be more common than I think?