Something positive for once

Ok, so my posts have been less than positive on this blog, I get it.
But this time I want to convey something positive in my life and hopefully make you understand something important.

I have a job now! An actual, honest to frick REAL job. Not some subsidized unemployment contract, no help through welfare or job agency. A real job, through my own endeavors. And I am proud of myself. Real jobs are so rare now a days, I almost thought it was a joke.

I have been on welfare the majority of my adult life. It has been tough at times and its been alright at times. I've already pretty much explained how the paperwork needs to be perfect and in sync or my household economy collapses. It's been very hard.

But there is another side to it that I never quite understood until I got my employment... Your life is on hold.

When you are on welfare, you are given the minimum to survive where you are in your life at that moment. There is no room for savings, moving to a bigger place, buying new clothes or furniture etc. I mean yea, you can apply for certain things with welfare, but only if it breaks and only the cheapest.

All of that is fair. It helps maintain your situation until you find employment, because its meant to be temporary.

During my time on welfare, I never really bought stuff, cause I couldn't afford much. If someone wanted me and my bf to visit, they would have to pay for our trip. We never bought new clothes or stuff, we got them for birthdays or christmas, from our families.
Most our electronics are hand me down's or gifts.
The few times we did buy something, we scrounged and saved for ages to afford it, but ofc it was at a different cost.

When some medical emergency happened we had to plan for it in advance so that it wouldn't cripple us financially. Or we'd have to rely on the help from our families.

We are still stuck in the same one room apartment, we still have the same shitty furniture that are now coming apart.

But now... Now I have a job my body can handle and my bf has a subsidized employment underway. We are both in Unions and we have insurances.
We can afford to get a bigger apartment, we can exchange old tattered clothes for brand new ones. We can exchange some of our old furniture for new ones. We can afford to go on dates and give our relationship some extra attention. We can grow as a couple.
All those things that weren't available to us on welfare is now at our disposal.

Now, we are by no means rich ofc. We still gotta watch the spending. But the feeling of going to the store and for once actually get the groceries you WANT not just what's on sale or what's cheap, and not have to worry about how that's going to affect you financially for the rest of the month... That feeling is almost like being rich.

I know there are people content with just having their life on hold. But that doesn't mean that they're going to feel that way forever.
I think most people want to experience what life has to offer, and you can't really do that on welfare. It's a cage and you're a bird. Inside is safe and steady, but if you don't sing, you get no food. I think most people want to leave the cage, be free and I dunno, go to Jamaica once or so.

I think most people who have never been on welfare doesn't understand. Either they think "oh you just get free money for sitting on your ass all day" or they think you are so poor that you can't even afford to eat properly. Both of those arguments hold a grain of truth, but it isn't that simple.
You can sit on your ass and get free money, but you will never move forward in your life. You would have to be satisfied with the cheapest foods and pre-used everything. And you'd still be required to do certain things, except you'd be doing it without the satisfaction of a real salary at the end of the month.

And yes, you are poor. But if you plan your economy well, you will never starve. That's the idea of welfare. To help you survive. We always ate well, but we planned our economy that way and prioritized food and groceries.

But if you wish to move forward in your life, if you want to have a pension to support you when you are old, you want to get a real job.
And you want to feel like your work matters to the company you work for.

This holds true for most people I've known that has been or still are on welfare. No one likes it, not really. Not when life could be so much more.

I am grateful that I have job now, one that doesn't make me sick all the time. I am grateful that I get to pay taxes and that those taxes goes to others who struggle with their life on hold.

And if your life is on hold right now, I sincerely hope that it is only temporary.
It feels like forever and every time you apply for a job its the same bullshit.
Be brave enough to go for something you are passionate about, or at least have a genuine interest in.
And make a personal connection, let them notice you. All this over the internet nonsense doesn't work.

Ofc there's no magic trick for how to get hired. Mostly, you just gotta have a lot of luck and have the sense to grab an opportunity when it lands in your lap.

Thank you.

This is Lupus girl,
Life un-paused.

Denied

I've applied for many jobs throughout the years, even before I got sick. Things are different now though.

I'm sick and can't work to the full extent like a healthy person can. I also get sporadically sick here and there and will have to stay home those days I can't get out of bed.

Who is going to find that attractive on the job market? Better yet, if I do find myself at a job interview, how do I tell my future employer without turning them off to me? How do you dress that up?

"Well sir/ma'am, I may be sickly and broken but heck, I have the heart and passion for this job like no other."

So I resign myself to the fact that no one is going to hire me. "Wait, stop, no, haven't you ever heard of a self fulfilling profecy? If you don't believe in yourself, then no one will. You have to give it your best."

Oh really? After several years, you know where it's got me? Nowhere. And that's not from lack of trying. I've tried being super productive in my job search, I've tried being positive, I tried self help/unemployment programmes and courses. I have gone through more unemployment contacts than I can count...  and It all ends the same way. Nowhere.

Most people I know that are cronically sick are unemployed or on sick leave.

Don't get me wrong, the job market is tough for everyone, but it's even harder when you're ill.

 

"So what then? You're just gonna give up? You know, when life hands you lemons..."

I sometimes wish I could give up, but I can't afford to. You think it's easy to weave through the welfare system, public insurance and unemployment? Learning about all their different rules and regulations, only to have them change the next month.. You think I can afford to slack off and be done with it? If I don't stay on it, I lose everything. Don't get me wrong though, it should never be too simple to get welfare, but it is a chore every month. And everything has to land perfectly, or my economy crumbles.

It is a job in itself to make sure all of this stays in sync. Not only is it hard for me but it's even harder for my bf. He's an immigrant from the US and since none of the information on public insurance, unemployment or welfare is available in English, I have to help him.

And at the end of the day, if welfare doesn't come through for me, say my contact is sick, or I checked a box wrong, or forgot a paper... All of my bills get delayed. It is scary. Every month. It's a mental torment every month. "What if we can't pay the bills this month?"

So no. I can't give up. Giving up means laying down and die. I keep going because I do hope that one day maybe I won't have to deal with this crap anymore.

I know, I'm being dramatic. Most of the time I can shrug this shit off, but I can't help feeling like I'm in endless cycle.

And don't worry, after this shit blows over I'll go back to being my normal awkward self. Sometimes you gotta let yourself feel them feels ya know?

Who knows, maybe someone else out there feels the same? If you are, let me tell you, I have nothing positive to say to you right now. It sucks, we both know it. But at least you're not alone. 

And life never gives you lemons. Life gives you shit. How you clean it up, is what matters.

Thanks for listening,

Lupus Girl

 

Fog you

Good morning... Days like this I wish I didn't have to get out of bed at all... Technically, I guess I don't cause I have no job. But seriously, one can't just be in bed all day!

You have get up! Embrace the possibilities and seize the day! The world has so much to offer!

Gimme a break... The only reason I'm even up is because my boyfriends snores woke me up, I had to pee and when I got back, his ass was all over the bed with no room for me.

It's okay though, I like mornings. I just hate being tired. Which I am, a lot, in the mornings.

And let's get it straight, I'm not sleepy. This isn't some "I stayed up too late and didn't sleep well"-tired. It's overpowering, like a heavy blanket over your head. No amount of sleep gets rid of it.

I call it brain fog, and the best feeling I can describe it to you in a way you can relate is that it feels like fainting very slowly. Your brain wants to shut down, your legs get weak, you get tunnel vision and sometimes even see stars or spots, and you can't concentrate or focus on anything.

It sucks, but you just gotta wait it out.

While I wait I shall slowly work with my hobby: Crocheting 😄

This lil Cthulhu needs wings. Since I have these days when I can't manage to do much, I keep my hands busy. It makes me feel good to do something productive.

Also: sometimes certain brewed concoctions may help temporarily, even if it only alliviates the problem slightly.

And it tastes awesome 😌☕️

Stay beautiful, friends! ❤️

Lupus Girl out!

For no reason

Last night I couldn't fall asleep. And no it wasn't only cause me and my boyfriend were caught up in another praise-discussion about Star Wars-The Clone Wars, I kept tossing and turning from a fever that came out of no where.

After he forced an aspirin down my throat I could finally sleep, but this morning the fever is back.

"You're overworked" he suggested. "You need rest"

Yes it could be that my body is still recovering from last weekends Halloween frivolities, but I could also have an infection that my body is trying to fight off.

I usually don't get fevers. When I catch a cold I get a headache and my nose turns into a faucet. That how I know I'm sick. I can feel warm inside, but usually the thermometer will show normal or only slightly elevated temperature.

The reason I don't get fevers is because my body's immune system is trying to fight my healthy cells and tissue. So I take immunosuppressants, 3 different ones.

It keeps my immune system in check, but it's not ideal. It means I'm vulnerable to infection and I have a hard time fighting off whatever bug I caught.

Since my immune system is so handicapped I've become more sensitive to changes. Like this time when I get a fever for no appearant reason. It could be a sign of a flare up, or just an infection. Or it could be nothing at all.

If it's a flare up, my organs might be in trouble and I need a doctor fast.

If it's an infection, it can cause a flare up, so I need a doctor to help determine how severe the infection is. 

Usually it's nothing and I goes away on its own, but I can't help worrying.

At this point in my life I've pretty much learned to live with it though. It's like a partner you never asked for and keeps making trouble for you. But I manage :)

How to plan a party

When you have Lupus, there's a lot of things about your body that changes. But let's not forget how the mind changes as well. Yea, you thought your memory was bad before? Bam! Lupus makes things incredibly difficult to stick to your brain. 

I've been in situations where I keep asking the same question 10 times within the span of 5 mins and I still can't recall what the answer was.

Or standing in line at the grocery store and deciding between paying with card or cash. Then when it's my turn, I still haven't decided and I panic slightly cause I still can't make up my mind. 

Now imagine trying to plan a party for 9 people. Actually, imagine planning an entire weekend for 9 people.

During this Halloween, my best friend and her fiancé and a friend, decided to come up to visit. More people wanted to come so in total we were 9 people, mostly close friends.

I had to occupy my dear friend's apartment cause mine was too small. She of course didn't mind, she loves parties and Halloween. Though, she probably would have liked to know the exact day everyone was coming over. Somehow I had missed that.

Uh, change of plans guys, guess we're having the party tonight, instead of tomorrow!

Not to mention trying to figure out how to drive everyone there, when to go shopping and hopefully not forgetting anything important. I'm pretty sure I drove everyone mad with my "oops! I forgot.."

Since we hadn't planned anything for the day after, it became a Halloween party 2.0. I'm sure my friend would have liked a heads up about it, but I forgot to call and we just showed up. Poor girl was wiped out and sleeping on the couch.

She just shook the sleep off her and laughed it off.

Not mention ordering 1 pizza too much the day after and it's a shitty one at that.

But despite all that, and probably more, no one complained and everyone had a good time.

That's why it's important to have great  friends. They don't care about the details, as long as everyone have a good time.

Before they had to head home again, my best friend turned to me and said "all that stuff don't matter. I'm used to things being a lil messy and no one cares. It's not what is important"

It's easy to get yourself down when you feel like you can't do anything right. I'm sure that's true for anyone. 

But Lupus also messes with your mind. It becomes clouded and muddy. You say the wrong words when you mean something else, your mind connects in weird ways. Your thought processes take forever and this leads to anxiety about saying the wrong things, and over making decisions that affect others. Fear of making mistakes, because no matter how you try you can't seem to learn from them.

What's worse is you start telling yourself that it's useless to try cause you'll muck it up anyway.

It isn't easy when you can't even give yourself a break.

But you know you have the best friends in the whole world, when for the first time in a long time... you didn't let it get to you at all.

Itroducing Lupus Girl

I've been weighing it back and forth in my head, but I've reached a conclusion: Yes, it's time to share my story, my illness and shed some light into the world of Lupus Girl!

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