Living with Autoimmune Hepatitis

I've been living with AIH for over 6 years now and this is how I'm trying to deal with living with a chronic illness. This is mainly a place where I can vent my frustrations and be open about my struggles and feelings. I'm always open for questions and sharing experiences, not only about AIH but chronical illness in general. this is only a side blog sidebar/icon credit and generally a really good article

[livingwith-aih]

Bless this blog. I have the same disease and I thought that I was the only one because it's so rare. I'm so glad that we have this little community.

- Layla 💕

aw, I'm so glad you found this blog and this community. You're not alone ❤️

[livingwith-aih]

the way I have to constantly lie and put on a mask to not show how bad my health is, is getting so exhausting. I mean it is has always been exhausting but recently things have gotten worse I feel like and I see myself slipping because there are times when I just can’t hide how much I’m struggling especially at work and also at home with my family. my family does know that I have a chronic illness, but they don’t know how bad I’m also struggling mentally and the toll everything has on my body. I’m not the same daughter they used to know, but because I never show or say how I am and try to hide it, they can’t know and they can’t understand. in my family I never learned to express my needs and feelings in a healthy way, everything was just ignored, when I showed some kind of weakness or that I wasn’t feeling well I got dismissed and stupid comments thrown my way and it’s been so deeply ingrained in my brain that I fight so hard to never show how I’m really feeling. I’ve literally sat at the dining table with my family feeling like I was about to fall over from dizziness and kept up conversation. if I do mention a certain symptom or have to cancel plans because I’m just feeling that bad, I get stupid suggestions that are so far from the point and the possibilities and mostly they suggest to go see a doctor, but for chronically ill people it’s not that easy. you just can’t go to the doctor because of something because you are chronically ill, and most of the time it’s just the way it is and you have to live with it. most doctors won’t even examine you or do tests, because as soon as you mention you have a chronic illness and take all these medications, they will attribute it to that. also most of us have had terrible experiences with doctors. I can’t even say if my current health issues are stemming from my mental health issues, my chronic illness, the medication or something else and I’m just tired to constantly explain myself and try to get help, I would even know how. 

I have never been open my illness, I missed so many opportunities in life and I feel like I’m so far behind everyone else my age and I constantly lie and try to find other excuses to others why my life is how it is. I know my co-workers are only trying to be nice, but every friday and monday they ask about my weekend and if I have any plans ror what I did and I’m trying to hide the fact that literally every week I can’t wait for the weekend to do absolutely nothing because I am exhausted and I need to rest and recharge. for me there is so much shame in having to live my life as I do, because I don’t look sick, I don’t act sick, I hide it and it’s an inner battle and I’m constantly exhausted just to get through another day without feeling as bad. sometimes I get the urge to change things, to start looking for help, to find a cause for my health issues, because sometimes I think how can you keep living like this, this is not normal, you literally have no qulity of life and maybe there is something to be done, there has to be more, but is there? aren’t we chronically ill doomed to live like this? to constantly manage our symptoms, to constantly manage our everyday life, our activities? to just get through the day because tomorrow you might feel a little better? 

anyway, things are shitty right now and I’m so tired of my health being the most dominant thing in my life still and feeling guilty and so much shame for taking time for myself when no one understands.

[chronicmisadventures]

@yeralizard

[allsadnshit]

[spooniestrong]

Beautifully stated, @allsadnshit 💙🥄

[turtwig387]

Hello, yes, I'd like to be extremely clear right now, it's entirely possible to be traumatized from being in hospitals, being sick, having procedures and surgeries, and every and all other single terrifying or humiliating thing/things that happened to you as a result of being disabled and/or sick.

It's possible, it's probably even more common than people think because it's not talked about that much.

Your trauma is real even if it's not something that's talked about that often.

[lifeafterpsychiatry]

Never fall into the rabbit hole called "my condition is chronic so it doesn't even matter what I do." Recovery can be many different things. Recovery can be practicing self care. Recovery can be teaching yourself to use healthy coping methods. Recovery can be getting the support, treatment and accommodations you need to live a decent life WITH your symptoms. Recovery can be surrounding yourself with people who are good for you. Recovery can be exploring your passions and doing things which make you happy and feel meaningful. Recovery isn't just not being sick anymore. Recovery can also be about learning how to live a good life despite being sick/disabled.

[afewregretsmaybe]

Me after pushing myself too hard on a good day:

[fluffylittlemallow]

As someone who often downplays their own illness so that others won’t worry, I’m constantly straddling the fence between “I don’t need help, I’m strong and independent!” and “please, for the love of God, help me!”

[yesbpdbabe-deactivated20210115]

[betterthanakickintheface]

:D

[tor-rentials-deactivated2022020]

I made a thing

[livingwith-aih]

happy 10 year anniversary

to when my life got fucked :)))

I can’t remember exactly when I got my diagnosis, but I do remember that I was in the hospital at the beginning of august 09 having my liver biopsy and well after that it didn’t take long for the results to come back. I can’t believe it’s been 10 years. 10 freaking years!!! back then I still had the hope of being one of those lucky cases that after 5 was gonna go in remission and didn’t have to take meds anymore, but here we are and it’s just gotten worse. love that for me :))))

my health is a mess, but I’m still powering through, what else is there to do ✌️ I mean I gotta deal with this for the rest of my life hAhAhahaaHAha w o w 

[myalgicencephalomyelitiscfstom]

[spoonless-cyborg]

Being chronically ill makes it very hard to ever be comfortable in your own body, there are so many times where I just want to kind of slip out of existence for a bit, to feel absolutely nothing at all. I would love to be able to shut off the outside world along with the inside world, kind of like a sensory deprivation tank but like… from myself

[livingwith-aih]

Your blog made me cry my eyes out man because I deal with the exact same thing and I can’t ever speak about it or complain to my family members because they say I’m attention seeking or don’t take it seriously!!! Everything you post is SO relatable from the being passed around because it’s a poorly managed university hospital to the extreme health anxiety with every symptom but being too anxious to see the doctor :((( thank you for posting it’s nice to know that I’m not alone <3

Hey you, one the one hand I’m sorry you feel the same way because it sucks but I’m glad my blog is so relatable to you. You’re actually the first person to tell me this directly and it also makes me feel validated and know that I’m not alone as well <3 if you ever need to talk I’m here. 

I know I haven’t posted much on this blog in a while but everytime I read through it and read all the posts I’m reminded how much I still feel this way. so yeah, thank you so much for your message I really appreciate it and I wish you all the best <3

[livingwith-aih]

so I’ve finally started taking budenoside to slowly get rid of the prednisone and well shit I’m feeling fucking terrible :))) I’ve been taking it for only 5 days so far (the highest dosis of 9mg + 5mg of prednisone) and no joke I have all the freaking side effects you can think of and frankly I wish I was dead right now :))) I mean god I know I’m being dramatic but I feel like I’ve been hit by truck, I didn’t expect this to be so bad and I just feel so freaking awful and I don’t know what do to with myself :(( I feel like crawling out of my skin. I’m already trying to change my shifts at work because I’m hanging by a thread and I just feel like crying and it’s just the worst

anyway yes I’m having a stellar time as you can see

[livingwith-aih]

when your chronic illness is on the news because it’s rare disease day :)))

[livingwith-aih]

so I know I haven’t posted here in a while and I’m probably gonna make a post soon kinda reviewing the last year but for now I have an update that really bothers me

so I’m an outpatient at the university hospital where I get treated for my autoimmune hepatitis and it’s been bothering me for a while because it feels so unorganized and you just feel anonymous in this mass of patients, appointments were only possible tuesdays, I could never really reach my doctor because that’s not how it works at the university hospital, you had to rely on them calling you, and it was always said “oh yes I will call you when your lab results come back and something is not normal” and then I would wait for the call and it never came and I never really knew if my lab results were okay or if I was just forgotten? anyway I just didn’t feel properly cared for there recently and then on top of that I haven’t really seen my doctor for my last 3 appointments because she always had emergencies and she sent me home with a prescription and then this week she was sick and then I learned she isn’t coming back at all because she is on parental leave next year?? 

so yeah I had my appointment with this other doctor this week and he wants to put me on a budenoside medication (I think the american version is entocort) so he makes me this whole new medication plan and I was taken by surprise since I have never heard of that medication before and why did my other doctor who I have been with for years never once mentioned it? this whole situation left me so confused and conflicted that I didn’t even get to ask any questions and he sends me home with the new med plan and the prescription and I’m just like??? here is this new doctor I have never seen, who maybe skimmed by file a few minutes before seeing me and decides to change my medication that has been working (mostly)?? 

so now I’ve done some research on budenoside and while it sounds good how it works and that it is locally and doesn’t have the same strong side effects like prednisone, some things have me really worried, especially the side effects that do occur and how it will affect my blood levels? I don’t know what to do, I got the budenoside already but I haven’t taken it yet because I feel so confused and lost since I don’t have a doctor anymore? like I can’t go anywhere if I have problems with it or ask someone questions? also I don’t want to take new medication which I don’t know how they will make me feel right before christmas? this whole thing with the university hospital is such a mess. I mean I do have an appointment to have my blood checked next year but not an actual appointment with a doctor, so how can I know that he will actually call me to talk to me about my results? oh man I just don’t know. maybe I will wait until the new year and ask my GP what to do and if he can refer me to a gastroenterologist... 

does anyone has experience with budenoside/entocort with autoimmune hepatitis?