Kinda an important notice …
Hey y'all! I haven’t been on here much for the past several months, not sure if you even remember me lol
But yeah, if you do, I’ve got some things to say…
You don’t have to read all of this, there is a TLDR at the end but I just want to use my blog to vent.
Sooo … In the last few months, my health was slowly getting worse and worse. It started with a blister-like rash on my hands. At that time, I was working in the lab wearing gloves. So I thought maybe it was due to the friction of the gloves on my skin when opening bottles (I had to open a lot of bottles which were under high pressure).
After a while, I became more and more listless, I had no motivation to do the things I used to love like cooking or writing theories. I didn’t feel like keeping up with any manga etc.
And then pain started to set in. At the beginning, it was only in the morning. Pain in my joints of my hands. But I ignored it because I had this pain yearly and my doctor always said, “It’s probably nothing. You’re too young.” He was referring to me being too young for rheumatic problems.
I noticed how I started to have problems with concentrating. I started to forget things easily. I started to struggle with expressing myself or with remembering what I was gonna say or do. Much more than usually.
The pain didn’t stop with my hands. It spread into my arm muscles and my legs and hips slowly became more and more stiff. It was getting harder for me to stand up.
I still ignored it because “I had no time”. I was stressed because of my studies. I had to work on my bachelor thesis and exams. And since my ability to focus declined, I was getting more stressed because I wasn’t able to study. I spent days scrolling on social media without taking in any information. With each day not studying, I had even “less time”. So I told myself that I will deal with this pain after my exams.
Yeah, I know, stupid right?
The pain peaked after my exams. My whole body was in pain. I was unable to get up from my bed. Every little wiggle of my finger hurt. Every attempt to bend my knees shot me to hell.
I know, it sounds like I’m exaggerating. And maybe I am. But at that moment, I genuinely felt like I would die if I moved.
And then .. it got better!!
The pain lessened. I was able to move. I was overjoyed. I thought I had juvenile arthritis (simply said chronic joint pain due to inflammation). But if my symptoms are getting better without treatment, it’s a good sign, right? Right????
Yeahhhh, nope. All the pain suddenly came back two weeks after it was getting better.
And so cold. I was so cold everyday.
So yeah, I spent the last month or more getting sent from one doctor to another. Taking blood and urine tests here and there. Going to the emergency. Taking x-rays and body scans. More blood tests. Trying to figure out what was wrong with my body.
The first time one of the doctors told me something about the test results was on March the 1st, after my first day of work at my internship.
“You have an autoimmune disease.”
Yeah, I suspected that.
“It might be Lupus erythematodes.”
…
A vague memory of a celebrity announcing they had Lupus surfaced.
Lupus … a wolf, my latin brain thought.
Of course, I googled it.
“95% of the people with this disease survive the first 5 years. 85% survive the first 10 years.”
What about 20 years?? Does everyone die off after the first 10 years???
More google searches.
“Most patients have an almost normal life span.”
Relief.
“As long as it doesn’t attack your organs.”
Panic.
At that time, I had lower back pain for two weeks. Right where the kidneys are. Additionally, I felt a weird pain a little bit above my left chest and in my stomach area.
I might wanna explain more what systemic Lupus erythematodes is. But it’s complicated because every patient can have different symptoms and I’m still learning about this disease.
But what it basically does is inflame and cause pain to your organs. Most commonly it affects your joints and skin. If your internal organs are affected, it gets complicated. Even deadly, if it is your kidneys. It can basically inflame any part of your body that’s why the symptoms are so versatile.
Often the inflammation occurs in “batches”. Inbetween these flare ups of pain, you might have no symptoms at all. In my case, I still have morning stiffness and pain in my hand joints. I also don’t have strength in my hands.
What causes these flare ups? UV-light, stress, infections can be very dangerous and probably a few more things I forgot.
But most importantly, most of the patients have a limited “energy reserve”. Every, and I mean literally e v e r y activity requires a lot of energy. Normally, I can’t remove my blankets on my own because they feel too heavy. So my mom wakes up every morning to help me get up and wear socks.
The thing is, if I overuse my energy, I won’t pass out but rather draw from tomorrow’s energy reserve. But what happens in the next few days is another flare up of pain. So I have to be very careful.
Fast forward to last week, I finally got the official diagnosis.
Last July, I was in Rome, walking kilometres and climbing stairs up and down the whole day. No big issues except for tired feet.
Now, I’m already exhausted before I even leave the house for work.
It hurts. It hurts me and it hurts my family to see me like this. My family is super supportive. They do so much for me like washing my feet, massaging me etc. All the things that seemed so easily done, suddenly required so much energy. Especially my mom helps me a lot. And I feel so bad because she’s not getting younger and I know she has health issues too. I know she’s pushing herself.
Most of my friends and relatives keep their distance because they don’t want to upset me. But I actually just want one shoulder to cry on. Because I don’t want to cry in front of my mom any more. I know it hurts her. So so much.
So yeah, I wanted to tell y'all why I was absent and I will continue to be so. I want to focus on my health and try implementing life style habits that lessen the pain. Not sure when and if I’m coming back.
I’ve read that for some women it got better with age, so let’s hope I’m one of them. I will start medication soon, so let’s hope that it will help me and not affect me negatively. Let’s hope I will regain the strength to do the things I used to love.
And most importantly, I hope my family stays alright.
Disclaimer: I’m sorry, if I got any medical facts wrong. As I said, I’m still learning about it and there is so much info. I’d be happy if you could correct me. Thanks.
TLDR;
My health declined over the last months. I’ve been diagnosed with a very rare autoimmune disease. Since I was in a lot of pain, I wasn’t online much and I will continue not to be. I want to focus on my health. Currently, there is no cure but maybe I can lessen the symptoms by implementing healthy habits.
TLDR END;
If you read all of this, thank you so so much. It means a lot to me that you gave me some of your time to listen to me <3 but I totally understand if you didn’t!!
I’m very grateful to have found this community. The tumblr side of bsd has helped me so much during this pandemic. I’m very thankful for the people I met on here last year. I really hope that life has good things for you and that you stay healthy. I’m sending much love to y'all.
Especially my mutuals. I’m sorry that I haven’t interacted with y'all for such a long time. But you really made my last year so much better and I’m grateful for that. I hope you guys are alright.
@n1kolaiz @right-on-the-money @samsa19 @banunuisthebest @elk208 @everyonesfavoritebastard @chazukekani @atalina-falling @emmacifer @pompompurin1028 @agni-skies @justanotherdamnedweeb @boredotaku567 @tunamayuuu
I feel like I’m missing one or two people. I’m really sorry if I forgot you. My memory has gotten worse.
Take care everyone! Maybe I will scroll through my tumblr once in a while and interact with your posts. But yeah, please stay safe!
