I’ve been talking about feeling uninspired for a while and even when I have ideas for posts, I find the motivation to actually create them isn’t there. I’ve been writing more for my WIP and the inspiration and motivation to do that is slim and far between, I don’t want to be trying to force myself to write for my blog and burn out on it and sabotage the progress I’m making on my WIP. So generally the plan is every two weeks will be a post on the blograther than weekly for a while. I may not even do that depending on how I’m feeling. But the monotonous repetitive cycle that is my existence at the moment makes it hard to write for my blog when all I want to do is complain!
I’ve also had to focus more on my health again. I was meant to taper down 1mg of steroids every month but when we tried to go from 9 to 8 first time, I became very unwell within three days and had to go back up to 9 and it took me a while to feel better again. So we changed it to every two months we would try to taper 1mg and it’s that time again. Trying to make this easier on myself, I’ve been doing 8mg one day 9mg the next and onwards to try and make the transition a bit easier and less shocking to my body. I ended up changing it to 8.5mg for a few days (I’ve had to use my pill cutter for this) and I’m doing OKAY ISH and will go down another half in a few days to test the waters. I’ve also been more relaxed on my diet/how I’m eating to make sure I am not stressing my body further with food expectations or eating less than maintenance (my nutrition coach always reminded me that being in a calorie deficit will add stress onto your body, so I’m making sure I’m not in a deficit to not add extra stress on my body whilst trying to taper as that is stressful enough trust me) so I’m just trying to enjoy food, eat more nutrient dense foods like fruit (and veg when I can, I just like fruit a lot more lol) and eating foods I enjoy. Food has always been connected to emotions for me so eating the way I like for a week or so will also help reduce emotional stress. I’m planning on doing an updated What I Eat In A Day: 1 Year Pescatarian video so leave a comment on this video if you’d like to see that and hear about how I’ve been finding the change in my lifestyle.
I’m trying to remember to take my supplements more regularly as well!! Urgh, I’m so bad at remembering to take anything after my morning meds, I’ve been forgetting my evening pills as well and taking them later. I’ve also been taking more pain reduction precautions, using certain creams that are supposed to help (like biofreeze and CBD products) and taking an extra painkiller at night. I’m trying to keep up some weighted exercise as it helps reduce pain for me as well. I did film a few clips over my weekend which I’ll upload soon that will talk about a lot of this stuff and show you what kinds of weighted arm exercises I do etc.
My sleep has been out of whack since the time change (sound silly I know but I’ve read Neurodivergent people do struggle more with this so it makes sense) plus the steroid tapering, I’m pretty tired. I struggle to get to sleep before midnight coz it would have been 11pm before the hour change. Waking up at my usual 8:30 (sometimes 7:30 coz of the hour change) but struggling to stay awake, so some days I sleep an extra hour. I’ve had a few afternoon naps this week as well which is very unlike me. But as I’ve said, I’m doing what I can to just listen to what my body needs, it needs more rest/sleep at the moment and that’s fine.
I did get my previous benefits back recently so I have got some financial support back again (still, if you know PIP, it’s pennies) so I would really appreciate people checking out my Kofi, leave a tip or buy some of my art.I have 15 art pieces up for sale, plus a selection of handmade cards. Please check out my links throughout this post and to my social media accounts, leave some likes and share some posts, it helps a lot! I post on Twitter, Instagram,YouTube, and Facebook. I am starting to stream on Twitch again but whenever I link it here it error codes out so search artiecarden. Don’t forget to check out my affiliate link with the BookShop for any books you are interested in buying, it helps me out a lot! If there’s something you’re specifically looking for that isn’t on my lists yet, let me know in a comment what you are looking for and I’ll see if the Bookshop have it and link you.
I post pretty regularly everywhere, I just feel like I need to change how I do things for a while.
My content uploads have been a bit all over the place recently and I wanted to give you an update of why that is and what has been going on. At the start of February, I had my regular income taken away from me, my benefits were stopped. This wasn’t a lot of money but it afforded me to see my chiropractor and my therapist (two very important parts of my care that cannot be provided for free on the NHS) as well as pay my phone bill and my car tax. I’ve been more active with setting up my Ko-Fi art shop and posting on there to keep people updated with what I’m doing (projects wise etc.) and I’ve set up a fundraiser as I really feel like I need to get a diagnosis/assessment for Autism and ADHD. The last year I’ve been seeing more and more traits that link to these two conditions (I talk about it a bit in my recent video where I read Act Your Age Eve Brown about two autistic people falling in love) and I have chosen to go privately. I’ve decided upon this because the assessor was recommended to me by my therapist, I trust her a lot and have spoken to her at length about my thoughts and feelings re: ADHD and Autism, plus the waitlist on the NHS is very long, and having just been through quite a triggering situation with my benefits, I am terrified to open up about my experiences and struggles again to a stranger in case I am told I am making it up or I’m not really ‘that bad’. So I would rather go to someone my therapist knows and recommends, and has experience referring previous clients to and had positive feedback from. Not that I really need to explain this to you, but I like to keep things reasonably transparent as part of my thing is showing you what it’s like to live with disabilities and chronic illnesses.
So since my benefits were stopped, I started to quite aggressively go through cupboards and such in my house, looking for things to sell on vinted, facebook marketplace, depop, twitter, wherever really. I kept a lot of this info on my ko-fi. With a mixture of really generous donations and having sold some larger scale items, I think I may have just about covered the money I had lost(for one month at least). I still have a lot of items up for sale and to sell (please check out my selling platforms, a lot of stuff is up very cheap) and even started selling my art.
A bit before all this started, I’d sold three blackout poetry pieces out of nowhere! I had them up very cheap, just curious to see if anyone would be interested, and they were up for quite a long time before someone was interested but with that one tiny success came a lot of support on twitter and I sold two more pieces that way. I started finishing and listing art on my ko-fi (once i realised you could actually use it as a store, and you get 100% of the money which no other site provides! so it means I’m able to keep my art sale costs low) I finished an old painting of a hand in like a galaxy/magic glitter style which my friend bought. I listed the remaining blackout poetry pieces, and another friend bought a piece. I then started dabbling with a new concept I’d been thinking about for a while: my great grandparents went travelling a lot in their lives and took hundreds of pictures. Last summer, my mother and I went through all these photos ad picked out the ones to keep (of them or of my mum etc.) and I kept a hold of the rest that were mainly scenery. They went to places like Switzerland, France, Italy in the 80s and 90s. The film photos have this beautiful vintage quality to them where some of them look like scenes from independent films. So I started turning them into poetry art pieces and listing them on my Ko-fi as well, another friend bought one. Part of what made me start creating art was the desperate need of finding an income. I have all these supplies at home to create art with that are taking up space and gathering dust, it felt like the right time to start using them and experimenting with what works and what people like to buy. The only cost, really, is my time and labour. I also have a lot of old pieces that are finished or just need some final touches on them. Why not try to find these a new home where they will be loved and appreciated?
Then we also had Rare Diseases day, where I wrote such an extensive essay on here that honestly barely covers the surface of what living with Takayasu’s is like. I had planned to write up a blog draft but ended up hyper-focused on it for two solid hours, wrote 3500 words and found 6 references at the time. I later went and added further website links and other useful references including youtube videos. This had so much support from the TAK community, I think it reached 500 views in a week which has never happened before and now I have a handy guide to reference in videos and blog posts and when talking to people for, not only a basic 101 of TAK, but also my personal experiences mixed in there too. This is another example of when I’ve had to open up about my pain and been ignored by professionals, so I have a long history of being gaslit by medical professionals and I’m not the only one who has been through this either.
I’m making and posting a video soon on my experiences on steroids, again as a reference for what I’ve been through but also a helpful little selection of anecdotes for people new to this medication, but I have been on then since June 2020. We have been slowly trying to taper down the dose from 15mg. I’m currently at 9mg. At the beginning of March, I dropped to 8mg. The first two nights I had mild night sweats and by the evening of day three I was experiencing such awful chest pain I was concerned I needed to go to A&E. My body was not okay, it was really not ready to drop the dose. I ended up taking a couple of 1mg steroid pills that night as my other painkillers weren’t touching the pain, and going back up to 9mg the next day. I felt better, my chest was tender but not IN PAIN like it had been the night before. I felt miles better after my Adalimumab injection on the friday, and that evening (March 5th) I also got my first COVID vaccine! I had no side effects, the injection itself was basically painless. I had a couple of energy crashed the next day but that was more down to what I was doing.
I also had a few articles to edit, a book to read and video to make on it for a book tour, I was also working on my NetGalley reviewer rating, and feeling dysphoria, I’ve just been dealing with so much all in one moment that it has been hard to get or stay on top of everything. I mean I made a silly video Watch Dawson’s Creek With Me! because I was just so tired and burnt out I just wanted to watch a show I like and talk about it. My chronic illness related videos always do reasonably well, like this one on Hair Loss and Tips, but I was going through so much medical related trauma and triggers it just wasn’t on the cards to talk about it all. I was and still am exhausted. I couldn’t face putting on make-up for videos or photos. It helps me feel put together and ready to make something, but I couldn’t put myself into that mode. Especially when three weeks were dedicated to analysing the report on my health and writing an argument letter three pages long to convince someone that I have been wrongly judged and had a lot of assumptions made about me. All by another disabled person, which always stings more.
My only spaces of solace have been my one zoom yoga class a week (which is so severely discounted thanks to the lovely teacher I can still access it) and my zoom meetings. That includes my therapy twice a month, my weekly Sick Sad Girl meetings where a bunch of us gather on zoom to talk about a topic in relation to our lives and chronic conditions and just feel heard, zoom interviews for people’s Master’s or BA research (it’s actually very funny and validating talking to a stranger who is interested in you and your experiences of things, it’s nice to get some of these things off your chest) and occasionally facetime/zoom calls with friends or movie nights on Prime. I’ve been focusing on trying to actually connect with people in my life and face-to-face because I’ve been locked up for a year. Outside of my family I’ve only seen one friend in person (and it has always been distanced) and a couple of friends on facetime or zoom. I’ve barely left my house and even without everything I’ve been through since 2021 started, I would have found lockdown 3 really difficult anyway. I’m really lonely. It’s why I sunk into reading books and read 12 in January and 10 in February. I can’t sleep without constant noise, I can only shut my brain up by watching Among Us let’s plays because I’ll be focused on the tactics and figuring out who the imposters are, I can finally relax and fall asleep. This has been my nightly routine for months. I’ve watched all the videos from people I enjoy, multiple times, I’ve run out of videos. I specifically like Julien Solomita’s Among Us streams so I tend to just re-watch those endlessly.
A lot of my friend’s are going through it too, I won’t get into details obviously, but so many people are hurting right now. People I know, people I don’t know… it’s hard to ignore and focus on caring for myself. I take breaks when I need to. I’ve barely streamed (by barely I mean I literally haven’t once) because I’m tired and can’t do all these things I need to do whilst also trying to take care of myself. I would love to do some art streams where I sit and make art but it’s just not mentally plausible right now.
The day I wrote this up, I filmed two chronic illness related videos. I also have vlog type reading videos coming as well I just need to sit down and get to editing them. I think my post on here next week will be a collective book haul from end of December to roughly now as I’ve been picking up cheap secondhand books and new books with Christmas gift cards, and it is a simple and easy blog post to make. This is partially why I make a lot of book content, it’s easier on the emotions but also one of the only things I’ve been doing recently.
I wasn’t diagnosed last Rare Diseases Day, so I really wanted to grasp the chance to talk about my Takayasu’s Arteritis with you on my blog. I’ve mentioned bits and pieces here and there like on Instagram or my Youtube Channel, but here I’m going to go into what Takayasu’s is and what that means for my daily life. I also have a selection of other Diagnoses which affect my treatment and flares, so I may talk about that a bit as well.
I don’t want to go through my story again of how I was diagnosed as it was pretty intense, I did film a video explaining it all before I was officially diagnosed that you can watch, My Doctor Didn’t Believe Me. I will also be making a video specifically about the scans I had to diagnose Takayasu’s if you are interested, subscribe to my channel.
Now, onto Takayasu’s Arteritis. Pronounced Tah-Kah-Yah-Sooz Arh-Tuh-RIE-tis. Not Arthritis, Arteritis. A rare type of vasculitis that causes blood vessel inflammation in the large vessels (mainly arteries but occasionally medium sized ones as well) it most commonly damages the aorta and is often seen in the aortic arch and the main branches off it. The aorta is the large artery that carries blood from your heart to the rest of your body. It is also known as Pulseless Disease or Aortic Arch Syndrome as well as these are the main signs and symptoms of TAK. Easier to say as well, I guess for some people.
Takayasu’s can lead to narrowed or blocked arteries, of which I have two narrowed arteries that lead to each arm, but it can also lead to weakened artery walls that can bulge and tear which is called an aneurysm. Before I was diagnosed, I thought an aneurysm was something totally different, I thought it was like a blood clot/stroke. Takayasu’s can lead to pain in the limbs but most commonly arms, chest pain, high blood pressure, and even heart failure or stroke. Since joining some online communities for people with Takayasu’s, I’ve found that many people were not diagnosed until after a stroke or needing life saving heart surgery, if you watch my video linked above about my story you’ll see that in many ways, I got lucky and was diagnosed before something like this could happen, but not before permanent damage was already done.
There are two stages to Takayasu’s. Stage one can be impossible to identify, and as I was already dealing with other health issues for the years leading up to my Takayasu’s diagnosis, I don’t think I would have been able to find it earlier if I tried. Many people, but not all, will feel unwell with fatigue, muscle and joint aches and pains, mild fever which sometimes involves night sweats, and unintended weight loss. I have hypermobility syndrome and have dealt with muscle and joint aches and pains for years and years as well as fatigue. I never had a fever, I never lost any weight, but I did have night sweats on occasion. These are also symptoms of Crohn’s disease, which I was diagnosed with a year before Takayasu’s.
We were only able to eventually figure out my diagnoses because I had entered Stage 2. This is the stage that inflammation causes arteries to narrow, so less blood and oxygen and fewer nutrients reach organs and muscle tissue. Commonly signs are: weakness or pain in limbs with use, lightheadedness/dizziness/fainting, headaches or visual changes, memory problems of trouble thinking, chest pain or shortness of breath, high blood pressure, diarrhea or blood in stool, anaemia. I’ve had chronic headaches for years, the diarrhea and blood in my stool was crossed off by IBS/Crohn’s, I’ve also always had a dizziness about me often contributed to my hypermobility syndrome, my BP has never been that high and used to be relatively low… the only symptom I could go off was that my right arm hurt when I used it for anything, this is known as claudication. Washing myself, brushing my teeth, holding something, patting my dog… repetitive movement set my muscles on fire but it was often put down to hypermobility syndrome (as talked about in my video) or pinched nerves, but I had so many MRI’s, one of my entire spine, and not a single pinched nerve. I also had a nerve conduction test which came back perfect. Besides this, the only other thing I had noticed is that any time someone tried to take my blood pressure from the arm that hurt (my right arm) the machines never worked. I always had to tell them to use my left. Before my abscess draining surgery in November 2019, I’d just been having a panic attack over the cannula they were struggling to find a vein for, was sedated and was mildly aware of how much the cuff hurt my right arm and that I’d lost all feeling because it was squeezing so hard and it was lucky I managed to get out something like, “no you need to put it on the other arm, it won’t work,” before passing out. I woke up with bruises all over my right arm but they must have swapped over after I knocked out. This is what made my GP stop and think, and found I was almost entirely lacking a pulse. (This isn’t mentioned on all online resources, but it is on the Vasculitis Foundation’s page under symptoms and diagnosis.) Thanks to him, I made it to the right people and got diagnosed.
For some statistics, Takayasu’s (Also known and called TAK) is often diagnosed in AFAB people (9 out of 10 patients to be specific) but I have also come across some AMAB people too, between the ages of 15 and 40. It has affected people outside this age bracket too, but this seems to be the most common time frame. It is also more commonly diagnosed in Asian people and one study also specifically says in Latin American people. I have seen a few different estimations on how common this disease is but the Vasculitis Foundation and Rheumatology.org state 1 in 200,000 people. This leaflet says a UK study showed TAK affects 1 person per million per year, this is likely UK statistics. It also says 2 out of 10 people with TAK ‘get better’ after one episode and do not require long term treatment. It is currently understood to be an autoimmune disorder which occurs when the body’s natural defense system mistakenly attacks healthy body tissue. It is not thought to be genetically inherited but there is something thought to be within genetics and DNA that makes TAK more likely. TAK was first described by Dr Mikito Takayasu in 1908 (which I found out as I wrote this! More info on this under ‘History of Takayasu’s Arteritis’ here) For people who find videos more helpful for learning information, check out this Webinar by the Vasculitis Foundation on Takayasu’s.
Diagnosing TAK is difficult as it shows differently in each patient. Vasculitis.org.uk has some really useful info about each scan with images so I recommend checking that out. Not everyone will have raised inflammation in their blood tests (ESR or CRP), or show active inflammation on a PETCT scan. The most accurate diagnosis is a biopsy but it is very risky to do on such large vessels as the aorta and is not usually done unless the patient is undergoing vascular surgery. In my regular physical exams, my pulse is manually checked and listened to all over my body. I’ll have you know, my left foot has a great pulse! But, next to none in my right arm. This is where the other name comes from, the “pulseless disease”, because the blood pressure and heart rate are different across limbs depending on how much damage the arteries leading to them have sustained. 90% of patients with experience one or more arteries narrowing and rendering their limb pulseless, or nearly. They also listen for sounds called ‘bruits’ which can be heard over large arteries with a stethoscope, as far as I know, I do not have bruits. You often need multiple kinds of imaging scans done for diagnosis and to find the extent of the damage done so far. An ultrasound can find narrowing in limbs and neck, MRI/As with contrast can find narrowing in the aorta within the body, PETCT is for active inflammation but doesn’t really tell you much else and needs radioactive sugar water to work which isn’t great for your body and health. There are a few other scans, but I’m not entirely sure what they are or how they work as I’ve not had them done but there are more details in the Vasculitis Foundation site under Diagnosis. Also the Wiki page on this can be helpful for people totally new to health care as it links many key terms to help with making understanding the basics of testing and body parts included easier.
When it comes to treatment, there are a few options, but the general goal is to decrease inflammation (often by suppressing the immune system) so the disease slows or stops progressing. Many people have to take steroids and find it difficult to fully come off them as their inflammation rises and their symptoms return. I am on month 9 of steroids and I am slowly tapering down. Steroids are not a fun drug to be on, I’m also planning to make a video talking about my experiences on them as this is the third time I’ve had to take them and the longest. Previous times, I’ve been on them for 1-3 months at a higher dose. Another medication family often used is Immunosuppressants. They suppress the immune system, like steroids, but have less side effects and are preferred over steroids if possible. This includes Methotrexate (often used for Arthritis, my Gran is on this as an injection) Azathioprine/Mercaptopurine (I’m on Mercaptopurine), and Mycophenolate Mofetil. I believe all of these are also known as Chemo drugs. The third family of drugs are Biologics, which I am also on and are also to suppress the immune system! Apparently, “those with severe disease who don’t respond to traditional treatments may be prescribed biologics”, but in my case, I’m relatively complex with multiple autoimmune disorders I think I had less choice. Biologics are complex proteins that target certain parts of the immune system to control inflammation. Commonly used are Tocilizumab (which I was almost put on, but apparently is very rarely use for Crohn’s patients due to complications) and Infliximab which is commonly used for Crohn’s patients as well. But I was put on Adalimumab (find out more here in this video about this drug and my personal experience) for Crohn’s before I was diagnosed (literally two months before I was diagnosed) so we decided to just keep it up and see how I went and in September we upped my dose to weekly instead of every two weeks, and then changed the brand from Imraldi to Amgevita as my Rheumatologist had been doing some reading of research for TAK and Adalimumab. In April, it will be my 1 year on Adalimumab and I’ll be making and posting an update video to my channel. Some people also need drugs to lower Blood Pressure/Blood Thinners to help reduce the risks of blood clots. The other option is surgery, which is reasonably risky. If you have surgery with active inflammation, it is likely to not work permanently and possibly occult (block) again, but many people have to have surgery because it is life or limb threatening. I’ve been told that if I start to permanently lose feeling in my right arm and it starts to look very weird (yellowy translucent because there’s no circulation) I need to contact the Vascular surgeons for emergency surgery to save my arm. It can also be to repair aneurysms. There are also Revascularisation surgeries where a blocked artery is bypassed, usually with a vein graft from somewhere else in the body, usually a leg. I follow someone on Instagram who had this surgery, Susana Ramírez from Spain. There are also Percutaneous Transluminal Angioplasty (PTA) that aim to open narrowed arteries by inserting an inflating balloon to stretch the narrowed section, which I think Susana has also had. The Vasculitis.org.uk site has a lot of really detailed information on that the other sites I have used lack so I highly recommend looking at this site if you want to do further, detailed reading. The Rare Diseases site has some information on clinical trials as well, for meds and TAK.
Due to the nature of these kinds of medications, there are things you have to be careful of and keep an eye on. Lowering the immune system can make you more prone to contracting colds and flus which is why I’ve had to be extra careful during the pandemic as I am more likely to catch it but also have complications that threaten my life. There is potential for bone loss (especially with steroids) which is why I’ve spoken to an NHS dietician and now take a high dose calcium vitamin as well as vitamin D (helps the body to absorb the calcium). You need regular check ups with your doctors to keep an eye on these things. You can also become anaemic, which I was briefly the year before I was diagnosed with TAK for 4 months I was on a prescribed high dose of iron tablets and continue to take store bought. We are also recommended to get the flu jab, pneumonia vaccination, and/or shingles vac, as this helps reduce the risks. We cannot take LIVE vaccines so if we want to travel somewhere that often needs a LIVE vaccine before you go, you have to have a chat with your doctors about this. I’ve not had the chance yet as I was diagnosed early in the Pandemic.
The main team for people with TAK are Rheumatologists (joints, muscles, immune system) they are in charge of your meds, a Cardiologist (heart doctor) I don’t yet have one of these, and a Vascular surgeon (veins and arteries) who I do have and have met a couple of times, this was the man who sent me for the ultrasound that found the narrowing and really started the diagnosis process. My vascular surgeon discharged me but said that I can contact his secretary if there are any urgent worries that may need surgery. I also have my Rheumatologist’s secretary’s email to send her direct emails about new symptoms incase they are linked to my TAK or my other conditions that are also managed by Rheumatologists (hypermobility syndrome and fibromyalgia). I also send her research studies that have been shared in the TAK Facebook groups I am in, as she seems to be taking an active role in researching and understanding this disease more. I found one that states Crohn’s and TAK are very similar in genetic (???) shape/appearance, sorry can’t remember the right terminology. There is a Crohn’s vaccine (called MAP vaccines) in the works that is nearly ready for the public and this could mean one for TAK could be developed if they really are as similar as it is currently thought. The vaccine isn’t a cure but it is thought to be a way of making more severe symptoms and damage, minimised and be less damaging, which is always good.
One of the less discussed symptoms is Carotidynia, pain and tenderness over the carotid arteries (in your neck) which is found in 25% of patients. I have experienced this symptom on physical exertion since my mid-teens. It becomes so painful it is hard to breathe, I have to stop what I’m doing and grip my neck. It is recommended to refrain from extreme cardio like HIIT or circuit training, as it can aggravate these symptoms too much. Exercise is recommended to continue as it can help widen narrowed arteries, or encourage the development of capillarys (small veins which can help make up for narrowed arteries with blood flow) so they recommend regular weight training and gentle cardio.
It is thought that the majority of TAK patients will continue to have relapses and remissions throughout life, but it also appears that for the majority of patients it ‘burns out’ after a period of 2-5 years. There isn’t a lot of information on this, sadly, as I would love to know more. When I was diagnosed in June 2020, I had already been experiencing active disease for two years, and this will be year three. I hope I follow this trend of burning out at 5 years but I’m also aware (because of other conditions I have) this may not be a reality and will be a lifelong condition I will have to keep an eye on and take meds for. Up to 25% of patients with TAK are unable to work due to their condition. Hello, that’s me. Or, I can’t work a traditional job due to my chronic illnesses. The mortality rate is low for TAK, with early intervention, careful monitoring and treatment. In the US and UK there is 98% survival rate of ten years. Most discussion on survival rate tends to be between 5-10 years from diagnosis, I assume this is because it is so rare and caught at such varyingly different stages it can be hard to say past 10 years. Mortality linked directly to TAK is often a heart attack, heart failure, aneurysm rupture, stroke or kidney failure. Not everyone with TAK will find steroids helpful for their condition, and due to having been on two high dose short term courses in 2019 before my TAK diagnosis, I could give a definitive answer to my Rheumatology team that steroids definitely helped the pain in my arm, which is a good thing.
As you may be able to tell, this information is spread about across different sources. None of them are the exact same, and many of them miss things from their lists. My first searched before I knew I had TAK was on the NHS site under Vasculitis. This one mentioned painful, numb or cold limbs which was the first time the idea of limb temperature came up, it’s not really mentioned anywhere else and I’ve always had bad circulation to my hands and feet, they are often always cold and become so painful when it is winter and I have to go outside (walking to Uni in Feb-March was the worst, it was like walking on glass) and may have a link to Raynaud’s Phenomenon. This page also recommends the Vasculitis UK site for further info, so that’s where I went next. It is important to use references with good and trustworthy information for the beginning of your journey in understanding TAK for yourself or for a friend/family member. A page I came across as I was researching for this post is by Patient.info (the site my GP surgery uses for appointments and prescriptions so I know it is trusted) and this is the first reference to a certain pain I experience with over exertion of my arm, a ‘tenderness overlying the affected arteries’. If I push myself too hard when weight training, I feel pain over my brachial artery, which is the narrowed artery in my right arm, right above the inner elbow bend. It also mentions back pain due to Aortic involvement which I have never read before, and is more specific about the types of rashes linked to TAK. Other sources have mentioned rashes but never a specific name or description of it. This site specifies erythema multiforme and induratum. I had Erythema Nodosum in July 2019 which was thought to be my Crohn’s (as 1 in 7 people with Crohn’s develop this) but I’ve also read it can happen to people with Medium Sized Vasculitis. Muscle wasting is also not mentioned a lot, but common to happen if you stop using the affected limbs. Many people compensate for the pain by using the limb less affected, which leads to muscle wastage, another reason they do encourage continued exercise.
I hope this has been helpful in teaching you about what Takayasu’s is and what I go through with it. I would really appreciate if you donated to my Ko-Fi as I do create this content for free and this is my lived experience, I am unable to work but I love to create helpful and educational content when I have the energy and capacity. This piece is over 3,500 words with numerous references as well to make learning and further research as accessible and easy as possible. I want to help empower other people in similar positions as myself, it was hard for me to go through this only a year after my Crohn’s diagnosis, but I had definitely learned some lessons from Crohn’s and applied it to TAK. Follow my other socials for more personal anecdotes, research, and advice. I post on Instagram, YouTube, Facebook, and Twitter. I also Stream on Twitch sometimes, feel free to follow and join in on live streams. Also consider sharing my piece to reach more people. Please check out my other pieces linked below as well.
This is officially my 100th post on here (though I have privated a few older posts recently, but it counts) and I don’t know what to do with it. I thought maybe a general life and health update, I haven’t done one of those in a while and things are pretty different. A lot has been happening. Lockdown has been good and bad for a number of reasons. Personally, it’s been good because I finally felt like the playing field was levelled. I was finally the productive one, people were creating more virtual content and doing auditions virtually and day courses, rather than requiring physical attendance. I’ve gotten a lot done at home and I have sold a lot of things leading to some more money, more space and much more organisation. And I’ve had the chance to care for myself and do therapy from home which got rid of the travel anxiety of going to appointments. This has all been great and helpful for me in many ways and allowed me the space to adjust to life struggles.
However, roughly since the BLM protests, everything socially has rolled downhill. JKR being a massive transphobe and being defended by hoards of people, reading Harry Potter for the first time as an adult and being deeply heartbroken by the ableism I’ve not seen anyone talk about dripping from her pages. Forced DNR’s for disabled people who end up in hospital with Covid, if you don’t sign they will grab any old doctor to sign for you. Naya Rivera’s death actually hit me quite hard after I finally watched Glee and saw the wonderful character she created and the wonderful and outspoken person she was. Conversion therapy still being legal in the UK and it not being made illegal… People not wearing masks anymore, or trying to social distance, and just going out doing whatever they want whilst the UK has the highest death/contraction rate in Europe and second in the world? And we are coming out of lockdown? Acting jobs are already requiring in person auditions instead of virtual video calls. I’ve been publicly misgendered and wrongly named a few times recently which has been hard to deal with. The fear of a third gender marker because, whilst I am proud to be nonbinary, I’m also terrified of showing my ID to someone or someone seeing my ID who turns out to be a transphobe! Police, bouncers, bartenders, any random person who might end up seeing my ID, terrify me. It’s one of the reasons I’m ‘in the closet’ in hospital with doctors because even though I like and trust my doctors, I am scared they will look at me differently if they knew. And now my mum being bullied into going back into work again even though it’s not really safe yet for us. But there you go, capitalism. So, it has been hard existing in a world that so violently hates marginalised people and blames us for everything wrong in the world, when actually it was all caused by them and the 1% they keep voting in and falling for! Large exhale. I try not to think about that too much because it is hard living in a world that just kinda mostly wants you dead. This is why we need allies to speak loudly with us and do some fighting for us, I don’t have the energy to prove my worth over and over again. I and many others shouldn’t have to prove we are worth saving, you should just care for people, yanno? Sign some petitions and email your MP’s please.
My health is the next big paragraph. I basically was diagnosed with a really rare disease that only 2.5 people per million are diagnosed with in the world. It’s a rare type of large cell vasculitis called Takayasu’s Arteritis, it affects the arteries around the heart and limbs. I have narrowing of the artery in my right arm, this has been a thing for years and what lead me to search for answers as I experience muscle fatigue from repetitive use. This is because there isn’t enough blood supplying oxygen to my muscles, it can’t get through the narrowing quickly enough, basically. Then I found out recently, I have more narrowing that showed on a recent MRA scan which means my left arm is now at risk. We bumped my dose of steroids back up a little to 15mg which is reasonably low for things like this and I’ll be having a blood test soon to see if I maybe need an even higher dose. But this scan did show my thymus gland is fine, we were concerned I might have a growth on my thymus gland (which is in your chest) which could mean cancer. So at least I don’t have cancer, right?! With all this as well I’ve been struggling with my diet and weight. I have been trying to do as much anti-inflammatory work as possible with my foods and supplements, I went from vegetarian to pescatarian for the omega 3 fats which are huge in fighting inflammation. 10 years a vegetarian and I made this big decision for myself to try and give my body the best chance. I do also take fish oil supplements and turmeric but they haven’t done a damn thing, my inflammation in my bloods is creeping up and my colon is also inflamed again, levels have tripled since January. My biologic I started at the start of lockdown has clearly not done anything? So we are looking at changing to something else but it’s mainly used for Takayasu’s not often for Crohn’s so my Rheumatologist needs to speak to a million people before we okay it and everyone is on bloody holiday so it looks like at least a month before we know. Steroids and struggling with my eating habits have slowly put on some extra pounds of weight, which is common but still hard to deal with. I am at a weight that makes me anxious and uncomfortable. I was trying to intermittent fast but I found it wasn’t working with my food needs so am just trying to eat more intuitively and listen to my body. It actually took a few days for my body’s natural hunger cues to come back coz I was just over eating from boredom so long my body wasn’t really hungry. So we are on that journey along with my exercise journey I’ve been on through lockdown where I’ve just been trying my best to move more. I started slow by using the wii fit early on, then I would be going for walks after dropping post off, and more recently I’ve been using my stationary bike (mostly because the rain was preventing me from going on walks) and also incorporating weight lifting. I’ve read weight lifting will help my veins be easier to access for blood tests and cannulas, but also helpful for my Takayasu’s as it is supposed to force more blood through my arteries and veins that maybe it’ll undo or prevent damage. We will see, but I’ve been doing well on that front and I’m really proud of myself for it as I’ve not been this consistently active since I was in college and studied performing arts and did so much physical activity and dance all week. I’m feeling fit and enjoying exercise and I think it is helping my mental health a lot too. I’m also creeping up on 2 years smoke free, I quit smoking in September of 2018 and it has been surprisingly easy to keep off them considering I smoked on and off for a decade. I still miss it sometimes when I’m out with a friend who still smokes or writing a character who smokes, it was a huge mental health crutch for me but I’m glad I quit coz it makes Crohn’s and Takayasu’s worse. I have met a really lovely lady who works with other people with chronic conditions based in Wales who has offered to give me a hand and some support with some of this CRAP! It’s funny I just stumbled upon the support group she organises that has been moved to zoom sessions since covid, otherwise it’s all based in Wales. They have accepted participants from other places around the world too during this period, clearly aware not many support groups would have done this. She has offered to chase doctors and services for me as I’m in this very annoying limbo waiting period, not very confident with ringing people, and a big part of her job is just chasing down these services that are being a bit lax with patient care. So I’m feeling a bit more relaxed and hopeful that she may help get some things moving for me, and she sounds like she knows what she is talking about and what the doctors dealing with my care should be doing. Having someone more in the know doing this is super helpful and makes me feel a bit more relaxed. Hopefully this will mean good things. I also saw today there’s an infliximab biosimilar injection possibly coming to Europe soon, which would be a fantastic option for me as my veins aren’t good enough for infusions to be done regularly along with other tests and scans I need regularly, and infliximab is often used for both Crohn’s and TAK. That helps to ease some anxieties coz even though I’m sure it won’t be available for a while, it’s something I can bring up with my doctors and see if they can find out more for me if they decide tocilizumab isn’t the way they want to go. Check out my 6 months on Adalimumab video for more details on this specific journey.
Obviously, I’ve spent lots of time at home with my mum and my dog. It has been good for the most part, being together so much can put a strain on things. Layla, my dog, has finally learned how to play fetch! I’m so proud of her, she’s a collie mix and a rescue who has her own ideas of what she wants to do but has been picking up training over the last couple of years really well and she is so much better behaved now, still has her moments of being crazy and has no recall off lead but there has been a lot of improvement. 5 year old rescue dogs are easier to train that humans, evidently. My mum has been working from home until recently because of my health. Early lockdown she was still checking on a surgery site that was VERY slow to heal, and then starting my imraldi injections, and then going on steroids, kept me in the high risk category for a long time but I have been okay’d to relax it slightly so I can social distance more so now, so I’m hoping to see one of my friends from London soon and my local friend has popped over a few times to socially distance sit and chat in my garden, and it has really helped! My friend in Newcastle sent me a care package a while back when I was feeling really depressed and they have been putting together zine’s which has given me something to do and work towards and I’ve submitted my art to each volume. Having a reason to do some little line drawings again has also helped a lot and it has been a lot of fun. My mum and I started baking early lockdown but it made us argue so we stopped even though I masted the perfect banana bread… but we take drives to get out of the house and kept coming across little plant and food sale stalls on the roadsides and started picking up bits and pieces. We now own two tomato plants, some lettuce, leeks, and we pick up some home grown veg from these stalls which has been a nice change, there’s definitely a difference in taste.
I’ve had my productive moments and my entirely demotivated times, and that’s okay. I think overall I’ve been very productive. I’ve gotten my WIP up to 6.25k words, meaning I technically have enough words for applying for Masters, but I need a lot of editing and feedback from friends! I’ve updated a lot of my blog posts and learned a lot about SEO for my blog and youtube, which was no easy fete it’s so hard to understand! But I’ve gotten somewhere! I’ve done SO MUCH reading I quickly smashed my 12 book goal for the year and whilst writing this I’m somewhere around 35 out of 50, but if I keep going at this rate, I might have to push it again! It’s possible because I’ve been enjoying re-reading old manga and they’re so quick and easy to read I almost feel like I’m cheating. I’m trying to demolish some of my physical book TBR because a lot of these books are super old and I want to be able to unhaul any books I wasn’t that fond of and give myself some more shelf space. I have absolutely gotten rid of a lot of books several times over but looking forward to more being unhauled and finding them a new home or being donated.
I briefly dabbled in a bit of clothing upcycling or thrift flipping as a lot of people are calling it now and made a few items more useable but definitely have some half complete projects and other pieces I need to make up my mind what to do with… hmm. But I’m taking a break from that for the moment! I’ve been working on a lot of collaging in my 2020 notebook, I’ve basically filled the whole thing and got so bored at one point, I found a new notebook to start preparing for 2021 and putting some energies out into the universe that next year will be better (please, lord, whoever u are give me this solid) but I find collaging both satisfying and relaxing so it has been a helpful activity for times I am physically fidgety but mentally not really there.
I have watched everything there is to watch on Netflix it feels, this isn’t true obviously, but I hate the algorithm of Netflix and YouTube because if you go through a patch of watching one type of video, that’s all it suggests to you forever and I like to watch a variety of things and hate that it doesn’t easily show me a range of shows except what’s popular… I’m trying to update some of my LGBT+ Netflix posts but the few I still haven’t seen are just not of interest to me… or I’m not in the mood for currently so I’m a bit stuck!!! And everyone recommends the same five shows when I ask. I’ve gotten into watching a lot of true crime, mostly on youtube, but occasionally documentaries. I’m not sure why we enjoy these so much, I think it is morbid fascination.
I’m currently just exhausted of trying to do everything. I feel like I need to make some life decisions on what areas I want to focus on in my life because I do feel like sometimes I struggle doing any of it when there’s so much of it I wanna do. But I have a lot of limitations, and I may have to put a dream to one side for a while. For now, I’m just plodding along.
I hope you enjoyed reading this about me and my life. I don’t often talk about myself in this way, but I feel it’s important to share what I go through as the person behind the blog. I hope this might highlight some things for others to think about, but I also just hope it has help you get to know me a little better and that maybe you’ll follow my blog to keep up with me and what I’m doing.