List of the most popular hashtags for theme #TAKAYASUSARTERITIS

I turned 27! ⠀ ⠀ Though I was struggling a lot with pain on my birthday, I said “not today, pain” & focused on all the GOOD in my world. I celebrated how ~lucky~ I am to have such wonderful and supportive friends, family and my love Luci. I celebrated all my strength, hard-work determination to get where I am - I’m a hecking badass!! I celebrated all the amazing connections I’ve made thanks to the internet. I celebrated another year on this earth, and all the simple things that bring me the greatest joy: having fun with people I love, good food, and having adventures! ☀️⠀ ⠀ Living with the incurable illness that I have, I never take ageing another year for granted - and that’s been my silver lining to the cards I’ve been dealt. It’s been a scary thing to face so young - a life-threatening illness and chronic pain - and yet it’s made me appreciate everything that I have so much more than I ever did before.⠀ ⠀ 27, and I am so happy with who I am. I can’t wait to see what the future brings.⠀ ⠀ ⠀ [Image 1 description: Annika blows out a small cream & melon birthday cake sitting in front of her with 5 candles on it, the candle-light flickering across her face, hands clasped in front of her. Her mother sits next to her, beaming and clapping. Descriptions for following carousel images are formatted as alt-text.]

5 years ago I thought I was going to be a science researcher by now.⠀ 5 years ago Luciano thought he was going to be a musician.⠀ Today we’re living in Tokyo and I’m making fashion and sewing videos, while he does academic research into the Japanese economy.⠀ ⠀ Our lives are ~entirely~ different from what we thought they’d be 5 years ago after leaving school.⠀ ⠀ The future is impossible to predict. That can either be scary, or you can embrace that, go with the flow and be excited for whatever the future may hold, because fate isn’t set in stone. Even when the worst thing imaginable happens (I couldn’t pursue science because I became too disabled to work in that field), it eventually leads to changes, changes that can be a good thing if you let go of the idea of an alternate life that doesn’t exist.⠀ ⠀ I could forever be comparing myself to a “well” Annika who works in science, and I used to - but what’s the point? She doesn’t exist, and I am who I am now because of the experiences I’ve had.⠀ ⠀ I’m excited to see what the next 5 years will bring.⠀ ⠀ [Image description: Annika is sitting at a table, arms folded and one under her chin. She is smiling and looking at the camera. She is wearing a red beret, tinted glasses, red lipstick, and a white floral patterned turtle neck top layered under a beige floral sleeveless dress.] #chronicallycute #spoonie #takayasusarteritis #chronicpain #chronicallyawesome #tokyolife

I’m having surgery tomorrow and I’m quite scared so good vibes would be appreciated! It’s not a major surgery but I’ve been spooked by how seriously the specialists are taking my case due to my “complications” - which is good, really, because they’ll be extra cautious - but it’s also given my anxiety disorder a lot of fuel to work with anyway, I’ll be okay, I know I will - I’m just anxious! Send me good vibes and good wishes please!! ⠀ ⠀ Ps thank you to everyone who contributes/d to my Kofi and Patreon - I wouldn’t be having this surgery to improve my quality of life (and hopefully avoid worse, future surgeries!) without your support of my work!! ⠀ ⠀ [Image description: Annika is standing in front of a red and white brick building that says “ice cream, snacks”. She is wearing a long floral vintage dress, denim jacket that is half on, half off to show the dress, stripey socks and glasses. She is looking down and running a her right hand, that sports a wrist splint, through her hair.]

I just (neurotically) noted that I’ve only posted 16 videos this year, and now I’m beating myself up about it. You’d think the fact that I’ve been up since 5am from a medication-induced insomnia and am having my 3rd (and not last) minor surgery of the year might suggest to me a reason why my work has slowed down; that the fact I have a uni assignment to complete this week might also be a good reason; or the fact that I’ve focused so much on rehabilitation that I can now walk >1km again. Or like - that I’m chronically ill every day and that never goes away. Or that I wasn’t able to look at a computer screen without intense pain for 4 whole months. But no - anxiety and depression have decided to collude, comparing me to my able-bodied peers, trying to convince me that I’m just not good enough, just not trying hard enough, that I’m a slacker, a skiver, everything our culture tries to tell me I am.⠀ ⠀ Disabled = not worthy.⠀ ⠀ I’m trying my best. I’m doing my best to survive. And I need to write this, to challenge the thoughts racing through my brain, to challenge the stigma placed upon me, upon ALL of us, so that I can remind myself and all of us until it finally sinks in:⠀ I don’t need to be productive to be important, valued and loved.⠀ I don’t need to be productive to be important, valued and loved.⠀ I don’t need to be productive to be important, valued and loved.⠀ ⠀ You don’t need to be productive to be important, valued and loved.⠀ ⠀ ⠀ •⠀ •⠀ •⠀ [Image description: Annika sits in front of a retro-looking botanical wallpaper, smiling tiredly at the camera, wearing tinted glasses, a beret and a pink jacket with gingham overalls underneath.]

Cutest ever big bow dress from Jee Jing’s 2016 ethical vintage-inspired fashion collection - I will forever and forever love this gorgeous dress. it is such a special item of clothing in my wardrobe.⠀ ⠀ Yesterday I had the worst migraine and some of the worst pain of my life & I am feeling quite shell-shocked from it. So if you don’t hear from me in a few days, I’m taking a little break from internet stuff & excessive screen time as that seems to be involved in triggering my migraines! Plus, my body and brain need to ⚡️recharge⚡️. However, we *are* going to try and release a podcast episode today so keep an eye on @watch_read_listen for updates on that ☺️ stay wonderful, and I am wishing you all as pain-free a day as possible & if you don’t live with chronic pain, take a moment to recognise how nice that is, to be thankful, and never take being pain-free for granted! I’m so fuzzy headed so I hope this post makes even a modicum of sense Love love love #vintageinspiredootd #pastelpink #pinkootd #pastelpurple #ootd #chronicpain #brainfog #vasculardisease #vasculitis #takayasusarteritis #migrainessuck

We got the pink.⠀ ⠀ Soooo I accidentally sent myself into a massive crash, burnout and fatigue spiral ¯\_(ツ)_/¯ I’ve gotten so good at ignoring my chronic pain and fatigue, that I kept pushing myself well over my limits - and now I am unfortunately paying for it. But as I always try to remember when I’ve burnt out and I’m feeling a tonne of guilt for doing so: it’s SO impossible to know exactly where your limits are when you’re chronically ill, and if you don’t try to probe where those limits are, you won’t know what you’re capable of either.⠀ ⠀ Unfortunately this fatigue crash has also happened to coincide with financial stress: finding out that I have to pay thousands of dollars to have a surgery that’ll manage one of my chronic conditions (suspected endometriosis) and stop it from becoming much much worse, and help me not be in so much pain - buuut I don’t have private health insurance coz I can’t afford it & I’m so complicated that only private doctors will DO this surgery. Gah. And then some beaureaucratic nonsense has also meant that I’ve lost my health care card that allows me to get my medicines for cheaper, so I am also now stressed out about how I will afford my medicines. And my support worker. So I’m burnt out, fatigued and stressed out of my mind. yay⠀ .⠀ Hey! If you’ve ever learned how to sew or learned something new from my channel or Instagram, I’d absolutely appreciate any money you can support me with, if that’s financially feasible for you!!! 1. Support me on Patreon (link in my bio), even $1 a month is super super helpful and you get access to all this extra content like a look through of my design journal!! Or 2. Go to my ko-fi page and leave a one-off donation or 3. Purchase some merch from my @dftbarecords store!! I’ll pop links to all of these in my stories so so grateful for any help you can lend!!⠀ .⠀ Photo taken before my crash. Jacket/outfit is thrifted. #thriftedootd #spoonielife #takayasusarteritis #chronicpain #disabilityawareness

A crash day. These happen a lot when you live your life with chronic illness(es)! You’ve been pushing it and pushing it and finally your body goes - hold up mate - we’re sick, remember? Can you please just stop and let me catch up A crash day is a day when... you just can’t. You can’t do anything. Sitting up is a struggle. Standing nearly impossible. You shuffle around the house to gather up everything you need to keep you alive, then crash down into one spot. You drop all commitments. You make apologetic phone calls. You stay in jammies all day. ~ I think this is my first crash day ever where I’ve just done what my body needed me to do, and I’ve let myself rest. I’ve asked for help, and not felt guilty about needing that help. I’ve not spent the day being anxious about everything I “need” to do. I’m not measuring my entire worth based on how productive I am being. I am proud of that, and wanted to record this moment. It’s unglamorous and I’m very exhausted and in pain, but regardless, it’s a real moment of triumph for me over the demons that tell me a sick, disabled body is worthless. I’m sick but I’m worthy of love. I’m sick but I’m worthy of kindness. I’m sick but I’m worthy of help. I’m sick but I’m worthy.

So I’m thinking of making business cards with the following on them, and handing them out to ignorant strangers who bother me in public, while I zoom off on my chair. (And obviously only if I feel safe to do so). What do you reckon? . . Hi there! You’ve been handed this card because 1. You asked an inappropriate question (it’s okay, we all do it!), 2. You keep staring or 3. Annika has had to explain “what’s wrong with her” many other times today and is tired of talking. Annika has a chronic vascular and heart condition called Takayasu’s Arteritis (google it!). Her legs work perfectly fine, however walking for long distances makes her very tired, out of breath and causes a lot of pain. Today she needed to travel a long distance, so she took her wheelchair with her to aid her mobility, and which allows her to get to work, uni or medical appointments. She also doesn’t appreciate being compared to a car because she is a human being, and has heard that one about “needing a license to drive that thing” about 100 times already. She also doesn’t need to be prayed for, compared to your 85 yr old mother, or to be sold crystals or a herbal tea that will “cure her”. She would appreciate being treated like any other stranger you come across while out and about: with respect, with dignity, and to be allowed to have her privacy. Thank you for reading, have a nice day! . . Now, anyone know a company that makes business cards with recycled paper & sustainable inks?

Glamour shot From the throes of another prednisone taper, hello. I’m looking great & feeling like total garbage What is prednisone? I always talk about it but have never explained it and why I’m always tapering off of it so prednisone, also known as cortisone, is a steroidal medication that stops inflammation, as such it is commonly used as a first attack against inflammatory autoimmune diseases like mine. However..it is notorious for its unpleasant side effects. In good practice, it should only be used for very short periods (5 days..) however for many people with chronic inflammatory diseases, it gets used for much longer, especially when other medications (steroid-sparing drugs such as chemotherapy) do not work. When I was first diagnosed with active Takayasu’s arteritis, my arteries were literally being eaten by my body’s immune system and prednisone halted it in its tracks. Unfortunately, my body not responding to chemotherapy plus some not-very-creative doctors led to me being left on prednisone for..7 years now and counting. When it’s used long-term, it has verrrrry bad side effects including osteoporosis, diabetes, muscle wasting, fractures, “paper-skin”, depression, anxiety, cataracts, psychosis....one doctor said if I stayed on it much longer, well, it’d cause early death. So that was fun to hear and a good motivation to get off it. Anyway, I have a bunch of these great long-term side effects and blame prednisone for a significant amount of my disability. However it initially saved my life...so, it’s a bit of a love-hate relationship ANYWAY in 2016 I was finally put onto a *biological* medication which ~ hooray!! ~ worked!! So tapering off prednisone began. Unfortunately my kidney’s adrenal glands had stopped producing their own cortisone by that time, and my body got very used to the high dose I was on, so tapering is a very hard thing to do and must be done very slowly - too quickly, and I’ll die. Yup! I describe prednisone withdrawals as.. being hit by a truck, while verrry hungover, with the flu ✌️ But celebrations are in order because I’m finally down to 10mg of prednisone which is the result of a LOT of hard work!!