Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts

Wednesday, 31 August 2016

What I've Been Up To!

Hey friends! So my blog has basically become the place where I unload and go over everything I've been up to over the past couple of months. It's like therapy. You're my (unpaid) therapist now, blog reader ;) Isn't this what blogging used to be, back in the days of LiveJournal? I'm just making blogging old-school again. Yeah.

So the last few months have been intense, exciting, difficult, scary and amazing all at once.

I did my first ever public speaking gig(!!) where I got to talk all about second hand and ethical fashion. The event was a "Second Hand Fashion Parade" hosted by Rozelle Markets and Ciao magazine. I also got to meet a couple of people who follow me on the internet and love my work, which was probably the most fun part of the day!



I have pretty bad general anxiety, and I never want to do anything like this again - I spent the weeks leading up to the event planning how I could get on a plane and run away so I wouldn't have to do it. But at least now that it's done, I know that I CAN do things like this! Because it would be awesome to be able to do stuff like this in the future. Anxiety can bite me.

BIG HAIR NEWS(!) - I am growing out my fringe! My fringe that I have had for the past 10 years (because I never liked my forehead as a teenager and that insecurity carried itself well into my 20s).
A photo posted by Annika Victoria (@littlepineneedle) on

I also started dressing more androgenously and I feel more like "myself" wearing more androgenous clothing, but still being girly when I went to. I definitely feel much more confident in myself because of how I am dressing - and that's been awesome.

What else - I started a medicine that I've been trying to get on for about 2 years now (as it's the most modern and therefore expensive medicine for my illness on the market, you're made to try literally every other horrible drug before you can start it!) and even though it's only been a few days since the first infusion, I am already feeling so much stronger and more like "me" again!

The one scary thing about this new medicine is that I'm now SUPER immunosuppressed. Walking around the world without a good immune system to protect you is frickken terrifying. I notice every cough and sneeze. It's like being in a battlefield, and everybody around you is wearing full body armor and bullet-proof vests, and all you've got is a paper shield. But I did get myself some super cute face masks, which have helped me feel a bit better about the whole thing:

I reached 500,000 subscribers on Youtube. THAT IS HALF A MILLION PEOPLE. HALF. A. FRICKKEN. MILLION. CAN'T. COMPREHEND. HOW. MANY. PEOPLE. THAT. IS.

What even is life, people. What even.

I also reached 5 years since my diagnosis. There's a not-insignificant amount of people who never reach the 5-year milestone after being diagnosed, so it was an extremely emotional time for me. The supportive comments that I got from people who don't even know me made me cry. A lot. But they were happy tears!! So thank you if you were one of those people.
*serious post incoming* It is exactly 5 years ago that I was given a diagnosis, and my life changed completely. 19 years old and just starting my life, I sat terrified in a doctors office as a surgeon apologised profusely for having to give me this news and then said two words that I will be hearing constantly for the rest of my life, "Takayasu's Arteritis". It's been 5 of the hardest years of my life. I had to learn how to live life more slowly. To live with pain and exhaustion, anxiety and depression. To accept uncertainty. To accept that there's some things I'll never be able to do. To live with a disability. I lost a lot of friends who suddenly didn't know how to act around me. Didn't know what to say to me. But its also been the best 5 years of my life. To escape my life as the "sick girl", I started sharing my life and outfits with the Internet. On days where my pain and fatigue was too high to leave the house, I learned how to sew. That has evolved into a successful YouTube channel with half a million subscribers, and just this year, my job. I made much stronger friends with the few who stuck it out with me. I made many friends with likeminded people from all over the world. I also started university and pursued my passion for science. I have developed the closest bond with the most amazing man, who I know I want to be with for the rest of my life. And I have emerged a stronger, more resilient and more positive person because of all I've been through. 5 years later and I'm still not in remission. I am still in pain. I still don't know what my future holds. But I've survived. I've gotten through it all, the bad days and the good. I've endured 3 years of chemotherapy. 5 years of steroid therapy. 5 years of total uncertainty, a bajillion doctors appointments, hospitals, blood tests, scans and feeling like a total science experiment. Kicking butt throughout it all. I am a fucking badass. 💪
A photo posted by Annika Victoria (@littlepineneedle) on

Luciano made his first ever appearance on my channel, as a 500K subscriber special! And people's comments about him have made my day! Honestly, sometimes I feel like I'm the only youtuber with a nice, supportive comments section. It scares me to go on the comments section of other youtubers. How did I get so lucky?
Anyway, the video is here and you should watch it because Luci is a super funny human being and I'm so happy that I finally got to share him with the world :)

A photo posted by Annika Victoria (@littlepineneedle) on
My younger sibling has also been really sick with chronic pain for the last few months, so that's been taking its toll on me emotionally. Having a sick family member is so distressing - and so of course it's brought up a lot of guilt for all the stress I've put the people who love me through when I'm really sick. *Sigh*. But hey, we all love each other and I think that's the most important thing. I just have to keep telling myself that time heals, and be hopeful that things will get better over time.

So here's some more good news, because that all got pretty serious: I appeared on the cover of my local newspaper, Ciao Magazine! I think that my friends and family probably took about half of all of the copies that went out - they were all very excited about it ;) Being recognized locally for the stuff I do is helping to "legitimize" this as a job for me. There's a lot of stigma that goes with running your own business and being a "youtuber" - a lot of people still don't consider it a real job that you should be proud of! But I put a massive amount of work into what I do so god damn it - I'm going to be proud of my job!
A photo posted by Annika Victoria (@littlepineneedle) on

Annnnnd I'll finish this post off with a couple of my favourite outfits from the past two months. Because, you know, this was once a fashion blog and all.


A photo posted by Annika Victoria (@littlepineneedle) on


A photo posted by Annika Victoria (@littlepineneedle) on

#ootd wearing a DIY crop top made by me, @eejewellery necklace, thrifted bag and @uniqloau pants 👌 I spent all day yesterday looking for a good, comfy pair of pants, walking around with @goodonyou_app constantly open, and was surprised that uniqlo actually have pretty solid labour standards for their manufacturing! They rate a "B" on the baptist world aid 2016 fashion report for good transparency and traceability & strong systems in place to make sure nothing's made using sweatshop, child or forced labour - although they could be doing better and ensuring that *all* their workers get a living wage. However, what was super shocking was the shopping centre I was at also has stuff like Armani and Givenchy (not that I could ever afford that, I was just curious) and they had *terrible* ethical ratings according to @goodonyou_app 😮 they're worth so much and you can't even be sure they're not from a sweatshop?? What the heck.
A photo posted by Annika Victoria (@littlepineneedle) on

A photo posted by Annika Victoria (@littlepineneedle) on

I hope that you're all doing well. Sending you all love and positive vibes,







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Friday, 18 September 2015

Nothing Can Stop Me From Dressing Up Cute | Magazine Feature!

The story behind this outfit: I felt damn cute, so pictures were had. All that I did on the day I took these pictures was to visit the doctor, so it wasn't like I was dressed up for any particular reason. But I think it's really important to do that sometimes, especially when you've been having a really tough time - well, it works for me, anyway! Dressing up in a style that's really "me" after days of oily hair, sweatpants and laying in bed watching "If You Are The One" gives me back some sense of normalcy and control.
I've realised just now that all my "tips" for dealing with a chronic illness have been to "do crafts and look cute", which now sounds a little bit silly and superficial and obviously won't work for everyone. But it all falls underneath the broader category of LOOK AFTER YO' SELF, which I think can apply to anybody struggling with ANY tough time! Prioritize the things that make you happy, if you can, first and foremost!
Outfit details:
Dress - Thrifted
Cardigan - Dangerfield 
Brooch - Deer Arrow
Bag - Vintage
Socks - Kmart
Shoes - Naot (style: Kedma)

Also also also - you guys!! I did a whole one-page interview with the real-life Sew Magazine in their September issue! Now this magazine is sold in the UK, if you live there and wanna check it out (and/or send me a copy?? Hahaha). 
It actually looks like I really cool magazine for craft tips and ideas - I wish I could buy it in Australia!!
I hope you've all been doing well! As for me, I'm even going to try and make a video today of something that many of you have been requesting ;) So check back soon!







p.s. THANK YOU to all those lovely people who posted me kind & goodluck messages when I first posted this outfit on Instagram! It really meant a lot to me!

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Sunday, 19 April 2015

Kiwifruit & Public Personas

So, I've been having a really hard time lately. I've had many days this week where I've barely been able to get out of bed. I'm going through both a positive yet very rough patch in terms of my health, where I'm finally able to taper off the high-dose prednisone I've been on for 3+ years. This is a good thing - my Takayasu's is finally less active - but also very difficult as my body is now going through some pretty intense medication withdrawals and I am very unwell as a result.

Something that I've really been struggling with as a result is the disparity between my "public persona" and the reality of what my day-to-day life is like. Sure, most people probably display a different public persona to that of their actual lives. I mean, whose facebook timeline is a truly accurate depiction of their everyday lives? (Also, nobody wants to know what you're having for breakfast every morning. Sorry.) But I think that this struggle is particularly profound for people living with chronic or mental illnesses.
When I'm out, socialising, or posting pictures on social media I give the appearance of having bucketfuls of energy, effortlessly doing it all and accomplishing amazing things. I try to be (or at least look like) superwoman. This is the public me.
But in reality, I take several hours to get out of bed each morning because of my chronic pain, I am usually able to do about 1 thing per day because of intense exhaustion, I often spend hours crying and feeling sorry for myself and most nights I collapse in bed by 8pm. That's a particularly bad day for me, but I really struggle. This is the private me.
What freaks me out most about this is that most people know me as the "energetic, bubbly superwoman" that public me appears to be. She doesn't have struggles or stresses. She's totally confident in herself and able to do almost anything. But private me has different plans, and it's gotten to the point where I fear going out and meeting up with people (other than my closest friends) and then suddenly having to leave due to exhaustion, taking a whole bunch of pills for pain, or suddenly going silent and forgetting what they've said to me. Being asked why I only study part time, or why I can't climb a flight of stairs, or why I'm using a pensioner's card (but you're only 22??). Even small things like why I have to avoid sunlight, caffeine, and people with colds like the plague (um, I could die). It can be embarrassing, scary and downright awkward to have to explain such personal things about myself to people I've only just met or don't know very well.
But one of the things that has been stressing me out most lately is disappointing people. When people reach out to me and I have to say "I can't meet up with you", or I flat-out ignore their messages or emails - hell, even if I ignore people's sewing questions on youtube because I simply don't have the energy to answer them - I worry that people will think I either don't care about them, or that I'm lazy, or I'm brushing them off, because they only know the public me and public me is superwoman. She has time for everyone and can do everything.
I guess the point of me talking about this is because it's something that's been weighing heavily on my mind lately and it's also something I want to raise awareness of. When you live with a chronic illness, there can be such a disparity between your public and personal lives and this can sometimes become completely overwhelming. I also really want to reach out to anyone else also living with a chronic or mental illness to tell you this: You are not alone and you don't have to be superwoman (or superman!). It's okay to take some time to yourself, to be a little selfish and indulge yourself in the things that you love. It's okay to take life more slowly. Whether this is working less, not going out as much or dropping a subject at school or uni - it's okay to take life at your own pace. (Honestly, this should apply to anyone going through any kind of a tough time).
So right now, I'm working more on looking after myself, not being so productive, and not feeling so guilty about it or worried about disappointing people. If I have to reschedule plans, ask for help, take time off uni or even take some time away from blogging (though blogging actually makes me super happy so don't worry too much about that one), that's okay. It actually doesn't reflect on me as a person.

And for people who are fortunate enough not to struggle with these things, I urge you to be kind and understanding with everyone - because everybody you meet could be battling something you cannot see. Lastly I'd encourage everybody to read this article from "But You Don't Look Sick", particularly if you have or know a person with a chronic or mental illness.

But some days, dressing up and taking photos is exactly what is needed to help me feel okay. So here's what I'm wearing today!

Outfit details:
Top is thrifted
Earrings are from Wanting Collection
Skirt is thrifted (The Red Cross)
Socks are from Tutuanna
Shoes are Naot Kedma's

Much love and stay happy,






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