For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.

I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.

About Me:

A blog about life. I live with Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen and CPAP.

I'll flap my broken wings and erase it all someday... You'll see.

Wednesday, 31 October 2018

Why Self Advocacy is Vital

Suddenly it's gone cold. Personally I prefer the cooler temperatures over sweltering heat but my lungs aren't exactly 100% happy with the sudden change of temperature. Maybe it's not helped that I don't really feel that I have actually gotten better from last month's hospital admission, I started to get there then the antibiotics ended and then it's just snowballed from there. I'm not overly worried but I am taking precautions and keeping an eye on things. Should my peak flow be really low and unable to bring back up then I know what I need to (reluctantly) do. I'm just praying that it doesn't come to that because I have an awesome month coming up and need to be well enough for it!

One thing I am noticing at the moment is that there's a lot of backyard bonfires and wood burning going on. I can't really stop that as there's no real laws against it but the smoke is affecting my asthma. Smoke in any situation will usually result in me coughing and wheezing. Cigarette smoke is one of my biggest triggers. Actually, passing someone outside whose smoking has an adverse effect on me. When I lived in Abbeydale, there was a woman who used to talk to my next door neighbour while smoking and standing on my doorstep (and the ventilation duct that led straight in to my bedroom) and it would make me cough until I started speaking up. The did stop as well. I've been admitted to hospital a few times due to 2nd hand smoke so for an asthmatic, it really isn't something to take lightly. The bonfires though are all part of the annual "Guy Fawkes" tradition so again, it's nothing that can be helped but it's only until around November 5th so that's not too bad and it'll pass.

The one thing that really annoys me is when you go in to town and people stand outside the shopping centre (there's a narrow street entrance, and despite being designated no smoking, well people do it anyway) smoking, often around prams or pushchairs containing small children. I find this galling. Smoking and damaging your own health is one thing but when you smoke over your pram where your precious bundle of joy is sleeping is just awful. I almost want to go over and ask if they want their child to grow up with severe breathing problems and potentially end up like me. I don't because I have to remind myself that it's not my place to say anything. It's crazy, in a society where some parents choose not to vaccinate their child due to the possible side effects, others will choose to expose their child to toxic smoke and cause other health problems.

Trigger avoidance is actually difficult. You can control the confines of the home to an extent (my home is strictly "No Smoking" and there's notices outside to visitors. Not only because of the trigger for my asthma (and that it is just gross anyway) but also because if someone came in here smoking it could cause an explosion with the oxygen cylinders around here! Even outside exposure to cigarette smoke can trigger a bad asthma attack and it's happened more times than I care to think of. It's difficult to explain to other people but sometimes people realise the problem and stops doing it near you. You just have to speak up, be polite though. I find that saying "Excuse me, would you mind not smoking around me as I am severely asthmatic" can actually have a positive response rather than swearing and shouting at people.

Sometimes people have to be told and only you can do that. I've had to learn how to self advocate, especially in situations where you need to get through to someone and get the help you need. It's about having the courage to say "actually, that isn't right" and not accepting a lower standard of life because someone else thinks you should. It's not being "entitled" or expecting special treatment, it's about getting what you need and getting people to listen to you. Something everyone is entitled to. No one should have to accept that and it can be difficult. Some people will try and stop you but you have to keep moving forward and get where you need to.

It's about never giving up.

Wendy xx

Thursday, 25 October 2018

Autumn Cleaning.

I've always liked autumn. The colourful foliage and the hazy sunshine always feels much better after a long and hot summer. This summer was just uncomfortable and far far too hot for my liking. I mean, it's alright if you want to lie there in as little as possible while feeling like you're melting but it's not really my idea of fun. So I'm actually glad that the summer has ended and autumn has officially begun.

OK so that means that winter is coming and that usually means that my lungs can strop and will strop. I think I did really well though to manage 18 months without an admission, pretty impressive but there were times when really I should have but just didn't want to be sat around waiting for hours, usually for a bed on a ward which obviously has its own set of challenges for me. I'm a very private person and need to be able to shut myself away from others because being around people all the time stresses me out. I'm not sure why that is, but it is what it is really. My lungs have been twitchier than usual and that usually doesn't bode well for me. I think there's a number of things that are potentially making it happen but as for what they are, I'm not entirely sure. I think maybe the sudden cold wetness has had an Impact, I've been doing my best to just lay low for now when work on getting things under some kind of control. I have a lot of things in the upcoming weeks, not to mention that my birthday is coming up soon as well as Christmas. I've not made any particular plans as yet but I'm sure that will change sooner rather than later.

One thing that comes in autumn is bonfire night and that always means that there's backyard bonfires, fireworks and everything in between. I have never been one for fireworks but the smoke from chimneys, bonfires and even people smoking while out on the street can be bothersome to us asthmatics, I personally find it galling to see people abusing their healthy lungs while there's plenty of people who would love and cherish a set of good clean lungs that actually did what they were made to do! I tend to ask people to stand away if they're smoking because not only is it a huge trigger but with my oxygen.. well it doesn't take a genius to know the outcome of that.

The one thing that I have been doing is bonding with the new boys. It never ceases to surprise me how diverse their personalities are. I've been getting to know my floofies and work out what they like and dislike. I have found that Marik likes to cling to me like a limpet and coos when he gets tickled. Out of the two, he was the more skittish, 2 years of very little human attention can do that to a guinea pig. His fur is getting fluffier as well and he's just so docile. Bakura is crazy. He runs around squealing, generally being a young guinea pig. I do wish he could stay this small forever though! He's a palmful of soft floof.

I've also been sorting cards, making some decks and practicing with them. Between us, we have some amazing decks and can't wait to use them and their strategies. But we are having a clear out as we have literally too many cards! (Because apparently that's a thing?) All joking aside though it's going to be a fun few days to sort out what we want and what we don't (I do mean the "roll eyes" kind of fun) but it's something you need to do every once in a while, clear out the nest a bit, put some items on eBay perhaps and make room. I'd like to start up a custom pig enclosure in the new year for the boys so that would be a fun project.

I guess keeping busy has been a part of how I stay sane in some really less than sane situations! I never like oversharing on Facebook about every single bump or bruise. The older I get, the more that I find it more fun to post interesting things I've done in the day or ideas I have about things, drawings, things I've made. That kind of thing. Celebrate life's victories and achievements and sod anything else really because in a year's time, you'll remember the better things you did and the bumps and bruises you get along the way will have healed and probably disappeared completely, so why worry?

What did an experience teach you? What happens now as you move forward?

Remember one thing, if I've ever taught anyone anything it's that no matter how many times I may have fallen down (be it my fault or anyone else's), I haven't failed because I always got back up and kept going. There's been times when I've come close, heck I won't shy away from the fact that I've sat there more than once with a load of things there and I've just wanted it to end and to go to sleep. I've been there. I've got scars to prove it. But the reminder is that I survived. I've reached milestones that no one believed I could. And I will keep doing that because there's still plenty of life in me.

Wendy xx

Thursday, 20 September 2018

Hospital and New Piggies

Last week was a tough one. Basically I gradually started to run out of steam and when that happens and my lungs just do what they do best and constrict, well it's pretty obvious where that ends. It'd been nearly 2 years since my last admission, maybe I was getting overconfident and I likely left it to the point where I couldn't set my symptoms straight. I woke up about half 8 that morning with all the muscles in my legs and back constantly spasming and trying to stretch out. If you use a lot of salbutamol it can cause your potassium levels to drop and the biggest symptom I get when this happens is that all my muscles to haywire, like I can't stretch them out so they hurt. I didn't want to wake Jace up so I went and flopped over the futon, chest was tight so I was on nebs too. I lay there for a while, even putting on some Simpsons to distract me. I really wasn't feeling good. Jace woke up and tried to get me to bed and we tried to get me to eat, by that point, I hadn't even tried to eat since Wednesday lunchtime. Didn't feel like I wanted to. I wasn't drinking either, nor was I "going" to the loo.

Then during another neb I had to get up and was violently sick. Throwing up bile isn't pleasant at the best of times and we knew then we were getting stuck. After the neb we realised we couldn't have done anything now and we pressed my lifeline button. Somewhere along the way, either by coughing or retching, my rib fractured and even breathing was making me cry out (which is something that I almost never do unless it's bad). My temperature was really high (I think we hit 39.5°C at one stage) and my oxygen levels were struggling, even on oxygen. I remember having a paramedic put a drip in to give me paracetamol but then it's kind of a blur of people coming in and out, apparently I was really calm or just didn't really know what was happening. When I got to MAU, the sister told me exactly what was going on. I was starting to develop sepsis which is why the doctors put me on IVs for pretty much everything. All I wanted though was to sleep.

I had a lot of doctors, nurses and ITU people come to see me. The A&E reg didn't think my asthma was the problem (no wheeze but I wasn't moving air either... ) then ended up being told that I was having a serious asthma attack and needed loads of Hydrocortisone, Magnesium, nebs and high flow oxygen. It's no shock that once bedtime came, all my meds were sorted (mix up...ugh...less said the better, when your pain meds aren't prescribed properly is the most frustrating thing), I just plopped. I was happy enough to sleep until about a nurse was worried as my blood pressure dropped. I felt better though, just very tired, being awake at 6:30 after getting to sleep around midnight. The problem with hospitals is that you can't sleep well, unless you're elderly or drugged up to the eyeballs. I think it's the openness of the situation. People are going in and out and you can hear conversations at the nurses station.

I find the whole thing awkward, you're sleeping in a room with people you don't know and are usually 3 times your age so there's little to talk about. I do try and make an effort with everyone because it makes it easier to cope with. I got talking to the relatives of the girl next to me, her story was sad but her mum was lovely and so funny as she told me about her journey. I won't discuss the girls story as its not my place, one thing that we do here at "My Journey" is to not discuss other people's physical or mental issues (or private lives, including personal info) without permission to do so.

One good thing that happened here was some new arrivals. I am on guinea pig groups on Facebook and got talking to a lady from a local guinea pig rescue, Puddleducks Guinea Pig Rescue runs a sanctuary for guinea pigs who need to find their "forever home" and I had been talking to a lady called Gemma about a group of 7 pigs that she had received and this week, we adopted these two little balls of white fluff. Marik is 2 years old, he's quite skittish but when he calms he loves cuddles! Bakura is 6 weeks old and he's insane! I found the little nutter trying to climb the side of the cage, I've never seen a piggie do that! Marik is very protective of him but it's good to see how much happier Yugi has been since.

I guess that's all for now, I'm a bit tired still so I'll probably blog again soon. So until then, please enjoy this picture!

Wendy xx

Friday, 7 September 2018

How to Be Accepting of Life

The not so fun thing about having a disability and not being able to work is that people are often quick to make assumptions about what thats like. There's a big difference between not working because you can't or because you won't. The truth is that most people I know who are in the same boat as me would love to work and contribute to society. Being on benefits has a stigma all of its own and I've heard enough people complain about people like me having to live on benefits. I've been accused of being too lazy to work (I would love to see someone work when they struggle to do the basics, have to rely on oxygen and over 30 different meds). I've always sat down with people and asked them why they think that. Then I explain that my "job", if you like, is just staying alive. To tell my story and hopefully empower other people to be OK with not being OK. But I also want to help people to see that just because we have a condition, we don't need to be pitied or treated differently.

Don't get me wrong, illness isn't something pink and fluffy. Being in pain all the time isn't cute and when you pity someone or baby them, you make them believe that they're a victim somehow. Or (and this is actually grotesque) there are those who only feel safe or loved when they're getting sympathy so they actively seek it. I've always said to people that I am Wendy, Wendy has many things that make her interesting. However Wendy happens to have long term health problems but those are only a small part of her. It may sound weird but I may have to deal with a lot but there is something more in here. Something that is worth hanging on to.

My day starts with the usual checks, it's important for me to monitor my peak flow, symptoms and other signs as the slightest dip in anything can be the signs that something has started to happen and it's vital that we know before it becomes an issue. Peak flow is the most important thing to monitor for an asthmatic. It's a measurement of how well your lungs are working and sudden drops can be a sign that you need help. My peak flows are currently very low as I have a chest infection and it's a stubborn one. I know that any sudden drop off or shortness of breath is an indication that I could have an asthma attack unless we get on top of it. After checking to see what's what, I then take my first lot of meds.

My meds are hard to manage as the list is ever growing and I am constantly checking what I have, trying not to be too much of a bother by asking for things to be brought in and ordering what I need to (which often has issues with the pharmacy not ordering what I ask for or some other break down in communication) and the subsequent having to chase the doctors or pharmacist to make sure I have what I need. I don't want to be on meds, I just know that without them, there's going to be a lot of pain and the possibility of even dying without them. I don't like that I have to ask for help and I hate that I have to disturb Jace when he does things, it makes me feel like a bad girlfriend sometimes but I know that I can't really do it all myself anymore.

I try though. Every day.

My hobbies are keeping me sane. I love playing TCGs and I really love collecting the cards themselves. Making little animations is another thing I do (usually MMD videos) or drawing and sewing. It's true that I have a lot of hobbies to keep me busy but they're only possible when my body allows them. Recently I have had a bad chest infection that has pretty much limited me as to what I've been able to do. Pain is a real part of what I had to cope with and being breathless can add to that as well. It makes you feel like you're doing 4x the work. Seeing something you'd worked on come to fruition, even when you struggled with it, is such a great feeling. If anything, the struggle makes it more worthwhile. I'm hoping that things will get even more busy when club comes back though, especially now I'm a registered judge.

Being a judge is great! Since joining the roster, it has inspired me to take my game up a notch. I have a deeper understanding of the mechanics of the game and it's really opened my mind to new strategies. It's been an amazing journey and I can't wait for things to start up soon and I can start doing what I enjoy.

So what I want you to take away from this is the courage to live your lives, be happy and don't look at just the things that are wrong, take in the entire picture. Take in every detail, however small because there is always something worth working for.

Wendy xx

Wednesday, 15 August 2018

Powerful Positivity

Its been hot here. Too hot. Never was one for the heat so this heatwave has been driving me mad, so I've been laying low with multiple fans and black out curtains, keeping the sun out. I've been drinking like a fish but that's what you need to do in this kind of weather. It isn't an easy thing for anyone to withstand, let alone someone with my kind of limitations and issues. Things like going to the loo can be a challenge and my nebuliser and I have never been far away from each other. Being on nebulisers at home has really made so much of a difference because I can handle my asthma a lot better and spend less time in A&E for nebs. Imagine if I had to go to hospital whenever I needed a neb?! I'd never be at home!!

I'll admit there's been times that I would love to unzip myself out of this body and in to a new one without medical problems. I mean it's natural right? No one wants to feel poorly all the time or have to spend hours trying to manage symptoms to have some kind of semblance of a life. That's the thing though with a lifelong condition (or conditions), you are always playing catch up with yourself, sometimes it pans out OK, other times not so much. I wake up some mornings feeling like someone ran over me with a lorry and sometimes that soreness and exhaustion means that getting out of bed can be difficult and I rely heavily on having something to keep me upright. 

My HSP has been getting worse recently too. Basically Hereidtary Spastic Paraplegia is a condition that causes the nerve endings from my spine to my legs to degenerate. I've had it all my life which is why when I was younger, my walking was a bit odd. Not to mention the curve at the base of my spine and the nerves it entraps, previous injuries to my back, arthritis and osteoporosis which make things like walking difficult. My legs are often weak or even numb so it can be difficult sometimes to get up and move around. That and having a pair of damaged and bad lungs can make life difficult on a bad day, throw in a stomach which doesn't close properly and Crohn's making my intestines grumbly, it can get pretty miserable, but only if I let it, which is something I can't do. What does self pity accomplish anyway? I guess though it's about making those bad days at least meaningful in some way and that meaning comes from the little things.they often say that it's the simple things that make up life afterall and thinking less about what I can't do and more about what I can do.

I can't grumble too much though. I just try and keep myself occupied with things like my crafting, MMD and of course gaming. Since becoming a Level 1 Yu-Gi-Oh! Judge, I've really learned more and more about the game and what rulings mean and as a result I feel that I have grown as a duelist too. I enjoyed Yu-Gi-Oh anyway and Jace and I love playing together. When things start happening again soon it'll be great because we can go and do what we love together again. Obviously we'll be careful about the more expensive mats and cards as they need us to protect them and keep them from accidental damage and nothing shows deep appreciation for something more than taking care of it. I spend hours with my decks, preparing them and making sure that only the nice, clean copies of cards are used. Obviously there's some cards that I would be wary about using in case they got scuffed (mainly my Cyberdark Impact secret rare and LART Monster Reborn) as they also carry personal meaning to them too.

It's funny actually, I've always had this thing about taking care of things, even if they aren't what other people consider valuable. True value is in the intangible. It actually bothers me how some people throw money at things to either try to impress or be better than others. Growing up, we didn't have the latest gadgets r expensive trinkets, if we broke something we didn't automatically get another. We were resourceful, something I still take pride in. I have a Sony camcorder, it wasn't top of the range or overly expensive but my family came together to get it for me for my 20th birthday. When it started having issues I was really upset as I've had it for 10 years, so instead of rushing to get a new one, like most people would, I did my usual thing of trying to repair it (which I did). I did the same with my Vita, PSP, laptops. Actually a lot of things have been taken apart and mended. So when the camera started behaving and working again, I was so happy because whenever I use it, it reminds me of my family and the lessons my parents taught me about not wasting anything, including time. Make the best of things.

So, if you take anything from this, let it be that life is short, make it what you want it to be. Don't look for someone to blame, take responsibility for your own life.

Wendy xx

Friday, 6 July 2018

Dear any doctor who advocates pain acceptance,

I write this so that even if you don't know my case or me as a patient, you will understand what chronic pain means for a person. It is likely that someone asked for your help today to overcome something that they're struggling with. It is also likely that help was denied because maybe you didn't want to add to what they consider to be the "Opitate Crisis" or you thought they were just looking for something to get high on. Although there are many people who are just after a drug fix, here's the truth. That is only a minority of people who ask for help for pain management.

The thing is, I, like so many others, have a number of health problems that are painful. Have you ever woke up and had to force yourself to move because you slept so badly and everything is hurting? Have you ever tried to stand up, only to have shooting pains from your neck to your hip? How about breathing? Does the expansion of your rib cage feel like it's so painful that you only take shallow breaths? These are just some examples of things someone like me experiences on a day to day basis! Now, my pain isn't the worst pain out there, it's not a contest though, remember that, but it does have a negative impact in my day to day life.

Now imagine you're trying to ask someone for help after the 5th night of not sleeping for more than a short period. You're exhausted. You just want it to stop now and for a reprieve from all this. You aren't asking to be doped up to the eyeballs, you just want the same as everyone else wants and should be entitled to, to live without constant pain and to function somewhat normally, or as normal as things are when you have an illness. That person says "No" to your request, saying something patronising usually about how pain is something you should just ignore or try and live with! Even if it does make you feel like jumping off a bridge in to oncoming traffic. Being told that despite your suffering, you aren't going to have someone help you, no matter how much you cry and you should just accept that. "Drink water and sleep..." "We can't give you pain meds because we don't want you getting addicted..." "Be more positive." And finally "There isn't anything we can do", the most soul destroying phrase you can hear.

I have experience of pain acceptance first hand and it wasn't good. It made me feel like there wasn't any point in trying anymore and if it hadn't been for people who love me, I would have become another statistic. Another life taken because they honestly made me believe that I had no other choice. Its true that pain medication doesn't cure what causes the problem but when you're problems are pretty permanent, it makes it less daunting.

No one wants to be stuck on powerful drugs to function.

No one asks for this.

No one should be denied help.

So, please, try and empathise with the next person who tells you their suffering and need you to help them. Please try and look beyond the media creation of a crisis that isn't really the way it's been portrayed. Yes there are places where the prescription of opiates isn't appropriate but try and look at each case individually. Empathise. Think about how you would feel in their situation.

Please hear my humble words and help people who need it. Advocating pain acceptance is only compounding the problem and isolating those who need their medicines to live without constant pain. The result of this could be that that person decides that the pain is too much and they can't live that way anymore. It does happen that people think that it's better to end their lives than suffer.

Wendy xx

Sunday, 20 May 2018


First of all, I am pleased to announce that I have been named as one of the top asthma blogs of 2018. Its been 5 years that this honour has been given to me. It really is an honour as well because when I started my blog it was mainly to help me deal with things and I found it was a catharsis. I really was in a terrible place and was emotionally and physically at the end of my tether. I remember it was towards the end of the hell that was Redditch YMCA (never ever again) and I think that without my blog is it possible that I could have just given up. And at that point, I probably wanted to. So I wanted to thank everyone who has come on the journey with me and to everyone who supports me, loves me and still likes to be a part of this thing. It means a lot.

I was often told that people wouldn't want to read my blog, that things were only going to get tougher and that I wouldn't be able to do this. Yet here we are 8 years later and I am now in a better and happier home, one where I can live with Jace and the guinea pigs and feel hope for the future. A future that at more than one stage I was told I wouldn't have ever known. If I had stayed in the situations I was in, I could well and truly believe that. OK so I have moved twice (first from the YMCA to my old Abbeydale place then 5 years later I moved to the bungalow) but those moves were important for my mental health and my physical health. The moves were both tough, the move from Abbeydale to here was probably the hardest as by that time I was in a precarious health state and I was worn down from things that were going on there, things that I don't feel like I should really elaborate on. Its not that I don't want to think about them, I'm just moving on with my life.

Moving to the bungalow has been so much of a turning point though. Its in a quiet corner in a quiet area. We have no trouble here, no drunks or drug addicts. The best thing is not having anyone upstairs to keep me awake all day and night. I can honestly say that I am not suited to living in a flat! Some people just can't hack it. I am one of them it seems. I don't mind this though as I feel as though I landed on my feet here and I think even (the last pet from Stanley Close) Yugi seems much happier, even if he doesn't like clean outs as it involves Jace wearing marigold gloves and he chats his teeth at the gloves. He's a funny pig really. He's been getting more and more social and has even brought Tristan out of his shell a bit so that's a step forward, he even took a dandilion leaf out of my hand the other day.

I think that one of the things that comes to mind though about living in a bungalow, especially now the weather is warmer, is that impact that people's lives when you have a nightmare neighbour. I'm not going to say that I'm perfect by any means and sometimes my garden looks a bit overgrown but I do try and keep noise down especially. I've lived with people making a racket all hours of the day and night and know how miserable that can make a person. When you're putting up with that day in and day out, you stop being able to sleep which makes it hard to function and actually has a massive impact on your immune system. People who are stressed out are more likely to suffer from illnesses. My own immune system is a bit rubbish due to prednisolone and my lungs are particularly weak as the years of stress and generally being unwell have caught up to me. I'm not as young as I was and don't always bounce back.
It's funny to think that 8 years ago was when I finally empowered myself to change things for the better.  I'm going to be honest though, I'm glad I've been making changes to how I was back then. Its proof that you can make positive changes in life, even if it doesn't always feel like it. I'm not saying that it has always been easy but it has been worth it. I'm still a work in progress but I can actually believe that I have a future now (even if some doctors are skeptical about just how long or what kind of future it'll be, others seem more optimistic, I'm more inclined to be positive) and I'll still be moving forward and making each step of the journey count.

Last week, we went to town for the first time in a while. It was great to get out and do things, even if it was exhausting. We went to the cinema, had lunch at Subway (yum!) and had a wander around town and a look through the shops. It's been a while since I've been able to get out and have a good time, probably because of the infections and asthma being a pain. I'll be honest, things are more exhausting these days. I find simple things like taking a shower or microwaving and eating a meal can be tiring, but with only 30% lung function (at best) it's not surprising that I'm working 3 times harder than most other people.
Its a harsh reality. 

But it's my reality.

So let's see what the next year has for us!

Wendy xx


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