I’m changing how I do things for a while

Hi pals

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 blog rather 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 been working on other side projects which has taken up time and energy. I’ve had two self tapes/auditions for small films I wanted to try and go for as the pandemic did get in my way. I started dipping my toes in the acting world again in late 2019. If you’d like to see some videos on my experience doing self tapes and auditions as a disabled and neurodiverse person, let me know! Sub to the channel and leave a comment on this video.

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.

Some of my upcoming videos planned are 1 year on Adalimumab (Amgevita) injections (check out the linked video for 6 month update), Gossip Girl reading vlog part 2 (the other half of the series, check out part one here), I’m going to continue watching Dawson’s Creek and vlogging each season, I’ve heard there’s a possible reboot coming so more reason to carry on! I’m working on a Manga Reading Marathon video still, the scans that diagnosed my TAK is also one some people were interested in as I mentioned a few in my pre-diagnosis video last year and a range of scans they do use in my TAK 101 post, I also want to do some book themed videos as I’ve been reading a lot of books by Black authors I wanted to make a video to recommend them and a video about the poetry books I have read as I’ve also been reading a lot of poetry through NetGalley. Leave a comment on this post if you’d like to see me make these videos! I also have a lot of books by Asian authors I want to get to reading, I’d love to make a recommendation video on those books too.

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.

~ Artie

They/them

5 Main Tips for Being a Better Trans Ally
We Need To Talk About White Privilege
Takayasu’s Arteritis: Rare diseases Day 2021

100th Post! Life in Lockdown General Update

blog post header for 100th post life update a picture of me and title text

Hey pals,

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.

If you want to buy books, check out my affiliate link here.

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.

~ Artie

(they/them)

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What The F*ck is ‘Erythema Nodosum’?

erythema nodosum

Hey pals,

I’ve been having another one of Those Times TM with my health. Basically, on the 15th of July, I started getting red bumps on my legs that looked like bites, and I gained about 10 or so every day for the next 5 days, mostly on my lower legs but also some around elbows and wrists. Weird thing was, they weren’t itchy like they usually are but I didn’t really notice that… it was on the 17th when I started getting the absolute worst pain I’ve ever had in my legs. It would come up the top of my foot, the outside ankles and outside of the calf muscles or up the shin. I rated this an 8 out of 10 on the pain scale commonly used within the NHS, and I have chronic pain. It’s often thought that people with chronic pain have a warped sense of pain after living with it constantly, so if that’s an 8 to me? Would it be a 10 to someone else??

I mentioned this pain to my podiatrist (who I conveniently had a phone appointment with that afternoon) but he didn’t seem too fussed. Was this an extreme allergic reaction to the number of bites I had? So I started frantically Googling, which people aren’t supposed to do but here me out… being chronically ill and disabled, I do need to google new symptoms in case it’s related to medication (either just a normal side effect or an allergy), something related to my current illnesses, or if it’s something entirely new. I couldn’t find anything that fit… at all. I would have some symptoms but not others.

Gout, tendonitis, diabetes, rubella, measles, mumps, chicken pox, co-codamol overdose, bug bite allergy… anything I could think of. As the week went on the pain got worse and harder to control with the medication I had. None of my painkillers touched the pain for more that 2 hours at its worst.

I went to my chiropractor on the 18th. He didn’t know either, and by this point I thought it was bed bites and we swapped my mattress out for a new one after trying to exterminate anything that might be there. Then the pain was back again and I had to cancel an event I was really excited to go to. I couldn’t walk with this pain and definitely not to and around London.

We couldn’t get a doctor’s appointment at all this week so I had to put up with it. I also had to cancel seeing a friend on the 20th because the pain kept coming back regardless of rest or no rest… The lumps also started to go a bit purple like a bruise. My bites do bruise so I still didn’t think anything much of a connection between the bumps and my pain. Standing and Walking would bring a different pain, like sharp needles and tight skin, and my knees were really weak and I would keep knocking them back and hurting myself.

Saturday evening was the worst for my legs. I was genuinely screaming and crying. I make a lot of weird noises when I’m in pain but I don’t normally scream. I ended up taking all my painkillers in one go around 11pm and slowly passing out.

Rinse and repeat for another few days until I saw my GP on Tuesday 23rd July. I start telling him about it all and he started asking me questions related to symptoms, now, clever me in a pain induced state had written up all my symptoms I’d been having in case they were all connected.

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He said the lumps look like erythema nodosum. This is often linked to an infection or a reaction to new medication (he said) and guess who had just gotten to three weeks on Mercaptopurine for Crohn’s? You got it, hun. So he added some extra tests to the bloods I’d just had taken and sent me for a chest x-ray, so off I went for the x-ray at the hospital. Short version, I waited over an hour coz it was hella packed and eventually found out later they were clear. Then went to have a massage.

My GP had written down erythema nodosum because I am too dyslexic to even try to spell it, he also said it doesn’t sound how it’s spelt thanks to the fun Latin or Greek derivatives of medical language. So, I had a Google by doctor’s advice.

Erythema nodosum is basically swollen fat under the skin that causes red bumps (ew) but it usually goes away around the two week mark. It can be a sign of something serious. It usually affects the lower legs (check) but can spread to other parts of the body, (check, elbows and wrists), the bumps can feel hard and warm and painful. You can also have flu-like symptoms! High temp of 38* or above (I don’t think mine ever got quite that high but it was close), tiredness, joint and muscle pain. The tips to help ease the pain weren’t super helpful because they were pretty obvious: take painkillers, particularly ibuprofen (I can’t take that because of Crohn’s…), rest with feet raised (done), apply cool wet compress (we were using ice packs and hot water bottles before wet cloths)… and that was it?

Common causes? As usual, no one really knows.

I got a call from my GP at around 7pm telling me the results of my bloods were back and very worrying. My inflammation markers were over 200 (the highest I’d had before was 94) so I had to be checked for infection. The hospital staff were kind enough to test the previous sample from earlier in the day instead of making me have another blood test and found I did not have any infections (WOO) but they believed it was linked to my Crohn’s not my medication or anything else. They think it’s a Crohn’s flare! Whilst I was in hospital, it was explained to me that it’s actually quite rare to see erythema nodosum and the doctor I had, said she had only ever seen it once before.

I had to come back in the morning to see the Gastro team of the hospital. She also wanted bloods, but again were nice enough to just go by the ones from yesterday. She wanted me to go on IV steroids for a couple of days and stay in hospital. This really shocked me because I really did feel fine except for my legs! I didn’t feel like I was having a stomach flare at all, everything was working normally. I went through my history with her and all my medication. She brought in a rheumatologist, because Crohn’s and joint pain/problems are often linked and he wants lots of scans and some bloods to be done. The Gastro lady ended up okay-ing me for pill steroids and to go home because I did seem well and that I would probably be less stressed at home. She wants our local hospital to take over my care and start from the beginning with my illness and what that means for me, because my previous care clearly hadn’t gone into any detail with me.

Now I’m writing this two days later, two days on steroids and feel much better. All this could have been avoided/quicker to deal with if I’d been properly informed about my disease and the possibilities of other things happening to my body. That’s why I’m writing this post, to show off this weird reaction that isn’t super common, but is far more common for people with IBDs. I want to be the blog post I needed when I was frantically Googling for my life, thinking I had a blood clot and that I would die. It’ll be okay, I know it’s the worst pain ever and you can’t continue normal life right now, but once you get the right medication and care, it’ll get better and it will go away. But it was really scary going through this and very emotional. I hope this can help someone out there, or just better inform some people about IBDs.

EDIT: I’m writing this roughly a year after this happened to me. I wanted to share that thankfully I have not experienced this since last year, I have also read it is possible to get Erythema Nodosum with types of Vasculitis (of which I have one type, but my rheumatologist says it’s unlikely it was linked to my vasculitis and was most likely my Crohn’s). I have also pretty successfully completely gotten rid of the dark discoloured marks on my legs, there’s super minimal evidence of it on my body and this was mostly due to using a mixture of caster oil and lavender oil on them, it is meant to have lightening properties so I also use it on dark patches from healing spots too. I was told i would never get rid of the marks so shove it! I just wanted to give an update to this post for anyone who finds this and is wondering what happened!

~ Artie

Check out the more detailed video of what happened to me during this time!

Also check out these two videos about my colonoscopy!

You can watch the video here if that’s more your thing of you want to hear more about it.

I have numerous other videos about my health conditions you can find them all in this playlist, please check it out and share.

Feel free to leave questions!

Trying to Heal my Stomach: Natural Remedies

Hey Pals,

I still don’t know if I have Crohn’s officially (but, yes I basically have Crohn’s, everyone who has looked at my scans has said ‘this looks like Crohn’s!’) but I have finally be referred on to a Gastroenterologist, who I assume is the person who will be dealing with medications? My large intestine had a bunch of biopsies that have all come back clear (at least that’s some good news!) but the MRI of my small intestine looks ‘suspicious’ and they ‘suspect’ I have Crohn’s. Sick one, thanks lads for being so specific.

Seeing as it looks like I won’t have an appointment with this person for quite some time, I have been researching what I can do at home to try and heal my stomach as much as I can and I just wanted to share what I am currently doing and thinking about taking on.

As we all know, I take and have taken multi-vitamins and magnesium daily anyway. I have also added a very strong dose of probiotics to my mornings, Coconut oil capsules that are meant to be good for detoxing your body, and an occasional turmeric capsule as it is meant to be good for inflammation.

I have also read that cod liver oil / omega 3 tablets have been researched a little bit and they seem to be helpful for people with Crohn’s to get them into remission. I am thinking about taking this on. Though I am a Vegetarian and have been for 10 years this summer, I do put my health first. Sometimes you cannot avoid taking things for your health that aren’t veggie friendly. I am already on some medication that has gelatine in the capsule so taking cod liver oil tablets to help my health isn’t such a leap for me.

And before anyone gets all crazy about it, that way I see this is: I am an activist and an avid eco-friendly person, I try my best to do what I can to benefit animals and people and the environment alike. Without my medication, I am basically useless and I am unable to function at all, let alone enough to be helpful to causes I am passionate about. I feel like it is a necessary evil, yanno? Plus, I hope this is something that would change over time as more people talk about the general ridiculousness of medication having animal products in them and also no one actually knowing about it. Did you know most medication isn’t vegan as it has milk/lactose in it?

Anyway, I’m going off topic!

I’m looking for ways, with and without research, that may help put and keep my Crohn’s into remission. So, anyone out there who knows a little summin summin, feel free to share below!

~Artie

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