Yes, that is my nickname sometimes. I get called that by my boyfriend, sometimes friends and even myself. It is funny how it changes depending on who's saying it though.
When I say it, I'm jokingly defining myself by a crippling disease that's taken over my life. When my boyfriend and friends say it, there's sadness and frustration but also a great sense of awe. Like I'm a superhero. Like getting out of bed is some kind of supernatural power.
So yea, I kinda like it. Lupus Girl. Here to deliver some hard knuckle factoids about Systemic Lupus Erytematosis. Not sure I spelled that right, but yea, that's what it's supposedly called in latin.
So, in case you didn't know I can also time travel. So now I'm gonna take you back to winter 2008.
I had just got my first real job. I was working at a recruitment agency as a janitor and all around helper. It was hard work, but I liked it. It had great benefits and I made good money.
I caught the flu after 2 months of working there. Big surprise, I was cleaning toilets so I was bound to catch something. But I took forever to get better.When I finally got back to work, I noticed how my joints would stiffen up, my feet and legs were killing me and I constatly felt like I had got the wind knocked out of me.
When I finally got home after a day of work I would sleep. I slept forever and it never helped. I was still tired.
I chalked it up to my body acclimatising to working again, cause I had been unemployed for a while.
I started to walk with a limp. I was in constant pain, a burning and slicing sensation in my knees that just wouldn't go away. My friends and family would notice and ask about it. I'd laugh it off and tell them not to worry. I'd get used to working soon.
After about 1½ months in pain, my hands started to cramp up. I couldn't stretch my fingers, but I went to work anyway. It was quite inconveniant when trying to dust with a microfiber cloth! But I did the job, with a smile even. I'd stuff the cloth inbetween my cramped up fingers and used the force in my wrist to clean. No problemo!
I'd have to lean on the mop and the walls for support so I wouldn't faint.
So yea, after that fiasco, I figuered it was time to see a doctor. That part is unfortunately a little fuzzy for me since my health started to decline pretty rapidly.
I do know that the doctor I saw was an angel of mercy and if it wasn't for her, I might have died that year.
She saw how sick I was and ran all kinds of tests that all came back clear. The only thing they could see was that my body was fighting off an infection, but had no idea what it was.
Durring this time I started developing a fever, a red rash on my face and a cough that wouldn't go away. I was always cold.
She'd have me come in and see her for free sometimes, cause she was so worried about me. I grew very pale and my fatigue got worse.
Durring this time I was so sick that I couldn't take care of myself, so I went home to my parents. I spent my time sleeping and drinking water. My mother tried everything she could think of to feed me, but everything I put in my mouth made me cough so bad that couldn't swallow. I started to rapidly lose weight and my fever got worse.
Finally my mother went with me to the clinic to see the doctor. She was scared out of her mind and she was determined to have me commited to the hospital.
The doctor let us know that she suspected something auto immune and that the test for that showed postive, but she couldn't be sure cause she wasn't an expert. She wanted to recommend my case to a rhumathologist, but the waiting time was around 3 months.
"But she'll be dead by then!" my mother exclaimed horrified.
I think the doctor realized that too, so she sent my case to the ER, where I could have a chance to see a rhumathologist that very same day. But she couldn't promise anything.
This was the last thing she did as my doctor cause after that she moved away.
So we went to the ER and we stayed there for hours, I think. I just remember being wrapped in a blanket and laying on a bench. I kept cracking jokes to my mom so she wouldn't worry so much, but I could tell it didn't help much. Eventually I got too fatigued even for that.
Finally I got led in to see my rhumathologist and she poked and prodded me a lil bit. Mostly she spoke to my mother I think. I was half asleep. My phone rang and mom picked up. I remember hearing my mothers voice crack when she told my boss I wasn't feeling well. I was so worried about her.
So they committed me to the hospital emidiatly. I got the diagnose Lupus and they put me on prednizone and NSAIDs. That's fancy speak for cortison tablets and Non Steroid Anti Inflammitory Drugs, meaning special painkillers that target inflammation.
I got better pretty quickly. After 9 days I was out of the hospital and feeling much better. My cough subsided, my rash was gone, fever was down and my appetite was back.
All of this happened in a span of 2-½-3 months approx. I ended up having to quit that job and I stayed with my parents most of the summer to recouperate.
All of friends and family have been very supportive and helpful. Although it has been a struggle to understand this new me and to get others to understand the new me.
I still don't quite understand my body sometimes, it constantly finds new ways to surprise me. But I've learned a lot with this experiance.
I don't take things for granted as I used to anymore and I try to manage my time according to my energy, not the other way around.
And I make sure to surround myself with people that are worth my energy, people that give energy back.
So yea, my energy is limited now so if I spend my time with you, you are special to me. And if you spent your time with me, here and now reading this, you are also special to me.
Thank you for your time!
Sincearly, Lupus Girl
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