Intervention

Since I have many friends overseas I've heard about that one episode of Intervention where someone claims to have Ehlers-Danlos Syndrome and is addicted to Fentanyl lollipops.
I've finally seen the episode now, first over Skype and then again just now on my computer as someone had found a link from UK I think, that works outside of USA. I have to say, that my reaction throughout the entire episode was: WHAT THE ACTUAL FUCKING FUCK!

I did not see someone with Ehlers-Danlos Syndrome in that episode, I did however see a very mentally ill and delusional drug addict who manipulated her entire family to believe all the bullshit. She is Marfanoid as is her younger brother, and apparently has some hypermobility in some joints. But in general, I call bullshit! Until a doctor has confirmed her diagnosis, which no one hasn't yet, she shouldn't walk around claiming to be the face of EDS!
People like her is the reason that us living with Ehlers-Danlos Syndrome and other painful conditions, has a hard time getting the right care and medicines when we seek help, our issues are often labelled psychological even though they're not- in most cases.
I looked very carefully for signs of actual physical pain through the show, I saw none, I just saw a lot of theatrical crap and heard a lot of theatrical screams as if they were recording Scream 2 and not a documentary.
You'll never hear an actual Ehlers-Danlos patient scream like that out of pain! You may just hear some grunts or groans at the most, maybe a rapid ouch as a joint dislocates or is going back into socket as that can be really painful.

Also, there's no such thing as flowers, colors, electricity or electromagnetism causing dislocations! That's pure and utter bullshit! Not even the lineup of Saturn's rings and Jupiter's moons can affect whether your joints dislocate or not! And not being able to do certain turns, in this case left turns, that's just absolute bullshit!
What can make someone with Ehlers-Danlos Syndrome dislocate however is putting weight onto a joint in the wrong way, moving the wrong way, accidentally pulling on a joint or it may happen just randomly without knowing how or why, I sublux in my sleep rather frequently for example, how the hell does that happen? And if your hips sublux or dislocate, the last thing you want to do is lie down and do a spread eagle because that will for sure dislocate your hips, not put them back in socket!

Many with Ehlers-Danlos Syndrome wouldn't be able to dance like seen in the episode, nor would we be able to get up from the floor or ground as easily and outrun a whole group of people- many of us can't even run! Oh, and forget about jumping out of a car through the sunroof without injury and then continue to run!

I'm really upset that TV is still airing this episode of Intervention, to us living with Ehlers-Danlos Syndrome it's doing more harm than good to our community and it's actually risking our safety as patients! And all that because of someone who claims to have Ehlers-Danlos Syndrome but hasn't been formally diagnosed by a doctor, or even fits the description really. But her body type suggests that there may be something going on with connective tissue, that's not for her to self diagnose though, she needs to see a doctor who checks her properly and run tests for Marfan as well, and she needs proper mental care because she's so delusional that she disables herself by the brain spooks! Plus the delusions about electricity and the other things she claims causing dislocations, is actually another dangerous thing in the EDS community. There are actually people that believe in it and all of a sudden get that symptom as well even though it doesn't exist anywhere else than in a mentally ill person's head!

Us living with Ehlers-Danlos Syndrome has it difficult enough as it is because we don't look sick on the outside, we have a hard time getting believed by medical professionals because they can't see anything wrong- until they look on the inside...


As for myself, I've had symptoms of Ehlers-Danlos Syndrome all my life, though no one connected the dots until I was 25 and my symptoms had started escalating rapidly. I had for some reason mentioned my issues in a forum and a friend there told me to read up on this thing called Ehlers-Danlos Syndrome. I read up on it and it was like reading about my life! I went to my doctor because I was in so much pain at the time and mentioned that I think my joints are too flexible, he did a quick test and sure enough, and referred me to see a rheumatologist. The rheumatologist checked my joints and tested me for rheumatic conditions, my joints were decided to be an 8 out of 9 on the Beighton scale, my rheumatic tests all came back negative. The rheumatologist didn't however know anything about Ehlers-Danlos Syndrome so I wasn't diagnosed then. I moved and got a new doctor just before seeing the rheumatologist and that doctor was more knowledgeable and even knew how to spell Ehlers-Danlos Syndrome without looking it up, she believed I have it but didn't have the authority to diagnose it so she sent me off to hospital for more testing. At the hospital I was checked by several doctors, but they were afraid of diagnosing from what I've heard afterwards. They did say though that I am very hypermobile and have many characteristics and symptoms of Ehlers-Danlos Syndrome. The only reason they didn't diagnose me on the spot was because my skin isn't elastic enough- while it is elastic and even more so than some of my diagnosed friends who were diagnosed by geneticists!
Time went by and I moved back to my hometown as it got dangerous for me to be 250 miles away from home all alone, I had issues with my heart racing and being very close to passing out both in the shower and randomly. The cause is most likely POTS or general Dysautonomia, but which it is, is yet to be determined as it's not formally diagnosed even to this day. The issues are still there though, I had a heart rate of 140 while sitting down when I got out of the shower earlier tonight, and I only just made it back to bed without falling.
Anyways, new doctor again, and this time it took a few more months, he read up on Ehlers-Danlos Syndrome too, and I do indeed have it! I'm a textbook case pretty much, and have been called that several times. But to be on the safe side, he sent me off for more testing by an independent team of experts who had met many with Ehlers-Danlos Syndrome before.
The physical therapist of the team was freaked out by my lose joints, the occupational therapist was shocked by how little it took for me to be in more pain, the psychologist could not prove that it was childhood issues causing physical symptoms (he tried though) and the doctor of the team who had not read my files before our appointment said after looking at me and talking with me, that it can be nothing else than Ehlers-Danlos Syndrome that I have, so I was diagnosed again!

I have since had MRI's taken, and even there you can see physical evidence of my Ehlers-Danlos Syndrome. I have no lordosis of my cervical spine for example and that can be an indicator of cervical instability. Fellow Ehlers-Danlos patients sees that I have a retroflexed odontoid bone with pannus formation- another visible sign of cervical instability. I also have what appears to be visible signs of instability in my lumbar spine, plus several bulging discs that may today have herniated as it's been close to two years since the images were taken. But that's where I am today really, trying to get some answers on my spine and neck as those are causing me a lot of issues, including issues with not knowing where I have my legs unless I see them and not feeling my bladder like I should.

I'll turn 30 this year, and while I have managed to avoid joint surgeries this far, I may well be facing fusion of parts of my neck and lower back in the future, and as for my other joints, only time will tell! My joints pull apart like one of those toys with elastic skeleton in them, you know, the kind you make with beads?
I have had surgery because of Ehlers-Danlos Syndrome though. My hysterectomy 1.5 year ago was needed due to how Ehlers-Danlos Syndrome affected my periods and me not tolerating or being helped by progesterone and not being able to take the regular contraceptive tablets. The progesterone I was on in attempts to control my periods made my joint laxity much worse too, that's something I'll have to live with for the rest of my life.
I also had dental issues when younger, I had some milk teeth that wouldn't let go so I had to have them extracted as my adult teeth had already started coming out, or trying to at least. I also needed adult teeth removed in my teens due to dental crowding and I wore braces for a while as well. I have a slightly high and narrow hard palate, that's something very common in connective tissue disorders.


Anyways, the episode of Intervention doesn't help Ehlers-Danlos Syndrome patients at all, the episode is built around a lie or possible lie and is so full of bullshit that even a bull would feel ashamed. I think it needs to be mentioned more clearly in the episode that it does not reflect what Ehlers-Danlos Syndrome is, at all, and that doing the things shown in the episode could cause severe injuries in someone living with Ehlers-Danlos Syndrome! Also, we're not drug addicts! Many with Ehlers-Danlos Syndrome don't even get high from painkillers, and if you do, you're on a too high dose and/or on the wrong painkillers! And for the most part we are on both long acting and rapid acting pain management. Rapid acting only can be a warning sign, and in Intervention, the person was only taking Fentanyl lollipops that are normally only given to terminally ill cancer patients or for very short term as they have so much side effects it's crazy!
I'm on the Fentanyl transdermal patch myself due to the severity of my chronic pain from Ehlers-Danlos Syndrome, I'm on a fairly low dose and have been on the same dose for almost 2 years now of continuous patch use. It's only rarely that I need to take any extra painkillers. Tonight I had to as I'm in a bad pain flare that had me in tears yesterday and has had me bed bound all weekend.


And to show you the difference between an average day for me and a bad pain day, here's a couple of pictures to show you what pain may look like!

This is me on a pretty good day, note how my face is pretty relaxed.

This is me yesterday, I have a blank pain stare and my forehead is strained. I was close to crying from pain here. 

It feels kinda odd to upload an image of myself when feeling so awful, but I think it's important to get the word out there and give people an idea what to look for when it comes to pain. 

And when you are in bad pain, you can't hide it despite putting your greatest efforts into it. Another pain patient or a doctor will spot it! I for example, fidget a lot because I can't get comfortable, it's not something I even think about, but a friend I was talking with a couple of days ago over Skype saw it instantly! 

Good timing, busy times and just needing to rest some

Have had a really busy day today and doing way too much after a really lousy nights sleep last night and a busy evening yesterday. But anyways, I got some things done that needed to get done, I'll most likely pay for it for the rest of the week, but at least I got the things done. It may not seem like much to someone who doesn't have a physical disability, but to me it pretty much feels like running a marathon or something. Laundry, a load in the dishwasher and vacuuming and mopping the floors, especially vacuuming and mopping is really hard on my body because of the movement and strength needed for it. I got it done at least, and as I was vacuuming, I listened to my "favorites" playlist on my phone. While vacuuming the worst area around my cat's food bowls- he sure knows how to make a mess! Another One Bites The Dust started playing on my phone, and I nearly fell over from laughing since I heard clink and clonk all the time at that moment from kibble on the floor that went into the vacuum cleaner.
Once I was done with vacuuming and mopping and finally had the chance to lie down for a moment before heading out to get my dry clothes from the dryer, I Want To Break Free started playing! Freddie and the others in Queen sure knows how to do epic timing!

Was just as epic as last week when I was just browsing things on Facebook for a while, and a fascistic Facebook group was suggested to me for some weird reason (maybe it was suggesting it so I could report them for hate speech?!) I went to that group page, and just as I was hitting the "Report to Facebook" button on that page, Roger Taylor's song Nazis 1994 started playing on my Spotify playlist! Made me laugh so much when that song out of all songs in my playlist started to play right at the moment when I reported a fascist page!


I have been really busy for a while now, so if I usually chat and haven't been in touch for a while, it's not because I haven't wanted to, but because I really haven't had a day just to myself for weeks and just need some time to catch up with myself in a sense. It's nothing personal against anyone, it's just one of those periods that is really intense.
I had my trip to Poland and right before that I had attended a meeting out of town, I had barely recovered from Poland (not sure I have still actually) when I had a whole day out of town last week, and yesterday I went again, on Thursday I have an appointment out of town again, and on Friday to Sunday I'll be out of town again and staying in a hotel together with a bunch of people to learn more about the new discrimination laws as inaccessibility has finally been labelled discrimination! Seeing I'm a board member of a local branch of an organization for young people with disabilities, it may be useful to try to learn more, along with being able to inform friends about it if I just don't forget everything again the same moment I get home- I have a lot of brain fog and fatigue and tend to forget things a lot. So yeah, weekend away, and then on Monday I'm out of town again all afternoon and evening to attend an event.
And then I'll have to try to prepare some for a meeting with my doctor where I'll have to request a new MRI to be done of my neck, and also talk about the future as I turn 30 in little more than 6 months from now and am unable to work due to my condition. The board I'm in isn't a job, and not even taking up all that much time, it's generally one meeting each month, and sometimes I can't even attend that, but even with it not taking up much time as in hours, it takes up a lot of time from me as I need to prepare and recover physically every time I go anywhere. It totally wears me out going to the meetings, but it also gives me so much to just hang out with the other board members who also live with disabilities and discuss and plan things that I'm very interested in, such as accessibility! It's in a sense my only social life except for family and internet, so it means a lot to me to have those friends and meetings.

But yeah, if I'm not as chatty as usual, it's because I just need time to do nothing and just rest up in between things now, I'll be less busy after Monday when it comes to things to attend so hopefully I'll be a bit more social then. I just need to rest a bit now to cope with the events I have to attend, and to me resting generally means taking a break from my phone, and chat and talk less, I may still blog while resting because I tend to just think a lot at those times, in a sense exploring my mind and often my most brilliant ideas pop up while I'm introverting, so with the number of blog posts from me in the last few days it really doesn't look like I'm resting, but I am. I just need to get some things out of my mind and think loudly without actually having a conversation. But again, it's nothing personal against anyone that I haven't even said hello for a while. I'll be back though!

Now my brain doesn't really want to cooperate with me any longer, I doubt this post makes sense even, I'm so tired and achy right now, it's getting more and more difficult to type, so time to get some sleep- hopefully...

Thoughts about Queen, Brian May and Roger Taylor

After my trip to Poland and the Queen+Adam Lambert concert, I began to dive into the solo work that Brian and Roger have made both before and after Freddie's passing. I have to say, I'm growing really fond of their solo albums as well, especially Roger's album Happiness? from 1994, it has several songs that I really like, such as the song Happiness, Foreign Sand, Old Friends and of course, Nazis 1994! The song Nazis 1994 may raise many eyebrows when just reading the title, I sure as heck wondered when I first heard about it, but it's actually an anti-nazi song and Roger greatly dislikes nationalism, bigotry, discrimination and fascism. Dare say that made me like him even more! Best drummer ever, great musician in general and with an amazing voice, PLUS having such great opinions when it comes to human rights!

I haven't heard as much from Brian yet, but I like what I've heard this far! Back to the light is really beautiful! It's really no wonder he's been voted the best guitarist more than once now, just this weekend he was voted the best guitarist again in a rock magazine! He sure knows how to play his guitar in ways that you wouldn't think was possible. But even being the best guitarist in the world, he always seem so modest and gentle and keep both feet on the ground, his voice is also very soft and soothing. Then he has his Save Me Trust to give wild animals a voice, along with being a very brilliant astrophysicist/astronomer (not sure if it's one or both, but he's indeed Dr Brian May these days) and like Roger, a very good songwriter and musician in general!

I quite wish it was possible to just invite them over one day, not because they're heroes to me and are part of my favorite band ever, but because I think they seem to be really nice people to be around and just sit and talk with about things in general like awareness for HIV and The Mercury Phoenix Trust that they started after Freddie's death, animal rights, human rights, music, outer space and whatnot, just general chitchat with no journalists involved or interviews and such.
I know it's not at all likely to happen though, they're both very busy with their various projects with and without Queen, along with being husbands and family fathers. But yeah, should I ever get to meet them, I'd probably not be completely starstruck unless I accidentally bumped into one or both on the street without being prepared for it. Even the greatest stars walking on this planet are just regular people when they're off stage!


It's actually Roger's song Old Friends that made me write this post in a haste before I'm off to sleep. I played that song for mum on YouTube the other day, and then it hit her, and me, that no other band or band members have done so many songs and tributes to a lost band member! You won't hear The Beatles play tribute songs for John Lennon, and I haven't heard a Nirvana song for Kurt Cobain, nor have I heard any tribute for Michael Jackson from his own brothers! But Queen has made songs for Freddie, and Freddie is still always with them in spirit! Brian and Roger also finished the album with the last songs that Freddie sang before his death, Made In Heaven is a beautiful album, though some of the songs are just heart wrenching, like Mother Love which is the last recording of Freddie's voice, he didn't even finish the song, he never came back to sing the last verse so Brian sang it to finish the song.
Just shows what amazing people Brian and Roger are, and how much Freddie meant to them. Freddie wasn't just the lead singer, he was one of their best friends!



As for John, Freddie meant a lot for John as well, and I'm not going to speculate on why he choose to retire. I do know however, from reading, that John lost his father at a very young age, and Freddie was like an older brother to him, I've heard Freddie's passing hit him very hard. The reason I don't mention John much is purely because I respect his wish to be retired. He's never forgotten and I hope he's happy with his family and living the quiet life that he wishes, without being chased by paparazzi all the time!
This video is the last time John performed as part of Queen, many fans hope that he'll return one day, but we also know it's not likely, and again, I just hope he is happy with his family and having the quiet life that he wishes to have.

How Queen has helped me in my life

I try to be pretty open about things in my blog, all while keeping some privacy as well. This post kinda goes together with my last post in a sense, and it's something that has been a bit difficult to talk about, but here goes.

For those who don't know me or haven't read my blog for all that long, I used to be married. In the autumn of 2010 my husband and I separated and filed for divorce, at that time I did not feel well at all emotionally, I was probably even depressed for a while and didn't quite know what to do with myself or my life.
One evening, I just got in the mood to listen to old music from my childhood and before so I searched on YouTube for ABBA and Queen, as I was browsing through the list of songs, a song called The Show Must Go On by Queen came up in the list and I listened to it, and I listened again and again and again. There was just something about that song that caught me! After a little while I realized there was a message in that song and decided to look it up on Wikipedia to learn more about the history around it because both the melody and lyrics were so powerful!
I kept listening to that song many times and kept analyzing it more and more in my mind, along with listening to more songs from Queen, songs that were less known than classics like Bohemian Rhapsody, We Will Rock You, Radio Gaga, Another One Bites The Dust and We Are The Champions which you hear on the radio most frequently.
I came across the song Who Wants To Live Forever, a song which pretty much brought me to tears because it's just so beautiful and more and more songs I listened to.
Slowly but surely something started to happen within me, I started to see the light again and I felt inspired, inspired to do things or at least try to, the feeling of hopelessness left me and I got back to life again in a sense.
It was also at this time of my life that my body had been deteriorating for a while, and the suspicions of Ehlers-Danlos Syndrome had started to grow, I've always had symptoms of it, but it wasn't until 2010 that it began to affect my life full time. But even the prospect of having a genetic, incurable disease couldn't bring me down mentally when I had found the power of music!

Weeks went by, I continued to listen to the music, discovering more songs I had not heard before and diving deeper into the ones I really liked. It kept me going while battling increasingly worsening physical symptoms, keeping up at work became more and more difficult due to the amount of pain I was in and the level of fatigue I was battling constantly. But the music kept me going, I kept working for another half year before my boss finally called me into his office and I was laid off due to my health, at that time I was already in such a bad conditions I couldn't take another job, and I have not been able to work since. We're now in summer of 2011, the divorce from my husband was already history and I had pretty much moved on. Losing my job was a slap in the face of course, I loved my job, but at the same time I knew my boss was right, I could no longer do it.
But the music kept me going! It was like a guiding light for me and I had ideas and dreams that started to grow on me already in 2010 about things I'd like to do, much of it awareness projects for HIV/AIDS after I read about how Freddie had kept his condition a secret until the very end of his life, only very few people knew before that, that he had AIDS, I have to admit though, I'm still searching for a way to implement those ideas that I have, but hopefully one day, and hopefully those ideas will help end the stigma and make life better for those who live with HIV today...

Fast forward about a year, I had moved back to my hometown in Sweden due to it no longer being safe for me to live alone so far away from my family, after several episodes of almost passing out in the shower in Copenhagen from POTS (Postural Ortostatic Tachycardia Syndrome) or some other Dysautonomia, my parents had had it and wanted me home so they could easily come check on me if needed! Anyways, back in hometown, I finally got my diagnose of Ehlers-Danlos Syndrome, by the time I was diagnosed it was more of a relief than anything else to have it on paper, getting the diagnose did not bring me down emotionally, and then there's always the song, The Show Must Go On, and the show must go on- You can't just give up and kick the bucket or sit in a corner and pity yourself! You have to get out there and live your life to the fullest the best way you can! The show must go on, regardless of what life throws at you, you have to face it with a grin and do the best of the situation you're in.

Whenever I feel a bit down and need a pick me up, or just generally want to listen to great music, The Show Must Go On is my first choice when it comes to songs even to this day, almost 4.5 years later. It gives me the strength to handle my own health situation, it inspires me and makes me want to do good in this world. It remains my favorite song that has ever been written!

My Ehlers-Danlos Syndrome may be wrecking havoc with my body, but it can't touch my mind! I'm battling neck issues that may require stabilizing surgery in the future, chronic pain that would make a lot of people beg for mercy, joints that may slip out of place every so slightly even from a minor movement (my right SI joint is partially out as I'm typing this) and my photophobia (light sensitivity) has gotten significantly worse lately, now at the point where even a weak light will feel bright in my eyes and I've just had my eyes checked to start wearing contact lenses again so I can wear sunglasses as much as I need, I'm also planning on getting tinted prescription glasses so I can give my eyes a more comfortable light even when not wearing contact lenses, and I'm currently looking at different sunglasses as well as I only have one pair at the moment that I really like and those are sadly beginning to get pretty worn out as I've had them for many years.

But whatever EDS throws at me, I'll face it with a grin, I'm never giving in, on with the show!

The most amazing weekend ever!

My last post was written while sitting in an airplane 10000 meters above the ground somewhere over Germany.
Mum and I went to Kraków, Poland this past weekend. It was our first time visiting Poland, but definitely not the last! We had an amazing time in Kraków, even though we didn't have the possibility to go into the city anything, see, we went there to attend the Queen+Adam Lambert concert at Tauron Arena Kraków, and since I need my wheelchair to be out and about, and couldn't bring my wheelchair to the concert, we stayed in and around our hotel until it was time to go to the arena. We were staying at Hilton Garden Inn at Kraków Airport, and it is by far the best hotel I've ever stayed at! The staff were just amazing! So friendly and helpful, and it was very nice to just chitchat too when they had time. It being weekend meant the hotel wasn't very busy. I guess most people who went to Kraków for the concert stayed in the city closer to the arena. Mum and I choose the airport hotel simply because of our late arrival time and very early departure. We landed at 11:20pm (was supposed to land at 11:35pm so we were early) the evening before the concert, and then the morning after the concert, our flight home took off at 6:35am which meant needing to check in at the airport around 5am or so to get through security and such without stressing. By staying across the street from the terminal, we at least managed to get some rest in our hotel room after the concert, and we didn't need to find a taxi at like 4am.

So, the whole reason of traveling to Kraków: The concert!
OMG! Where do I start? It was pure epic, and so much emotions! I finally got to hear and see Queen live! Something I never thought I would get to experience! Brian and Roger were so amazing! Even at 60+ and over 40 years on stage, they were just glowing and were so full of energy, and you could see the joy in their faces, they truly love what they're doing!
And Adam Lambert! What an amazing live singer he is! That voice!

Some people think it's wrong of Brian and Roger to still call themselves Queen, and no one should sing Freddie's songs and so on. But as I say: Haters gonna hate... Unlike the haters, Brian and Roger owns the music they play, and if they still want to play live they should play live! Freddie is no longer with us, John made a choice to drop out after Freddie's passing, some claim he got severely depressed, others claim he just wanted to leave. I'm not going to speculate why he choose to leave Queen, but he did and it was his choice. I just hope he's doing well and is happy with his family!
Adam was asked to sing with Queen already by the time he won Idol, but hesitated for a long time before finally accepting. He never claims to be Freddie or trying to substitute for Freddie, he simply sings the songs and he does so in an epic manner with a voice even Freddie would be proud of, and Adam is a really good front man! Adam and Freddie are pretty similar in many ways, and if Freddie's spirit can see and hear the concerts now, he'd probably have some witty remark about Adam's voice range and totally approve of Adam singing with Queen. Queen can't really have a better singer than Adam, seeing Freddie is no longer with us!
Freddie may be gone, but he's definitely not forgotten! Adam is very grateful and humbled to sing the songs Freddie once sang, and the entire concert in a way felt like a celebration of Freddie's life and achievements, and the achievements of Queen as a band. Freddie is honored and remembered throughout the entire concert and even makes some guest appearances on the screen a few times.

I cried a lot during the concert. It was just so emotional to hear my favorite music ever, being played live by my biggest musical heroes walking this earth today!

The music of Queen has gotten me through rough times, inspired me and given me strength, and it still does all that. Brian and Roger are both amazing virtuoso, and I find that very inspiring, makes me want to dive into the music again, listen more, pick up my instruments again and try to improve my own skill some. Last night I took out my large keyboard again for the first time in over 3 years, and just played some randomly, just some melodies as I don't do chords or two hand playing (yet) and before I knew it, I was playing some parts from Bohemian Rhapsody, very very simplified, but still... Last time I played on my keyboard I couldn't play anything from that song!

And the thoughts of wanting to more for HIV/AIDS awareness and The Mercury Phoenix Trust grows on me more and more. I just need to find out what I can do, other than just blogging...

I really hope Queen+Adam will tour together more, and I sure hope there will be DVD's and CD's from this tour! If they tour nearby again mum and I will definitely go see them again, both of us are huge fans of Queen, Freddie and Adam!

Having seen Queen+Adam live this weekend is something I'll remember for life, and the only thing that could possibly top this would be a time machine to visit the 80's and attend one or more of the huge Queen concerts back in those days!

As an extra bonus when on the way to the runway on Sunday morning, I spotted Queen+Adam's private jet parked at the airport! The aircraft I was on drove right past it!

Sometime has to be the first!

As I'm writing this, I'm sitting on an airplane on my way to Kraków, Poland via Munich, Germany. I'm currently on the flight to Munich and typing this high up in the sky with my phone on flight mode and will post this blog post as soon as I can get onto a wifi network on the ground. This is my first time blogging from an airplane! 

Why I'm traveling to Kraków of all places? Well, mum and I are traveling to attend the Queen+Adam Lambert concert in Kraków tomorrow! 

So yes, we're flying down from Sweden to Poland just for a concert! It's amazing though! We're getting to see Queen+Adam Lambert preform live! Plus it's a nice little weekend getaway at the same time, none of us have been to Poland before, only dad has been to Poland before but he's only been to the northern part where the ferries from Sweden goes to. Now dad gets a nice peaceful weekend at home too as he has no interest in Queen! 

Looking out through the airplane window, I see the tiny little moon and some stars outside. It's so peaceful during the flight, I'm listening to music and looking out through the window, looking in the in-flight magazine and writing this post, while sipping on some tomato juice- my all time favorite in-flight beverage! Hydrates well all while it doesn't make you need to run to the loo, for those who are unaware, airplane lavatories are beyond tiny! I try to avoid them when I can, with my 5'8" or 173cm, I more or less hit my knees on the wall 😜

Now I shall continue listening to my music and just relax! Hopefully I can post this between my flights in Munich, or I'll try to post it at the hotel in Kraków! 

HIV doesn't just exist on World AIDS Day!

I do not live with the diagnose myself, but as a huge fan of Queen and Freddie Mercury, HIV is something that's very close to my heart. As most of you know, AIDS complications claimed Freddie's life in 1991, and apart from very few of his friends and family, no one knew about his condition until the day before he died. At the time, HIV was so surrounded by a lot of stigma and fear, in comparison to today, very little was known about the condition, the effective medicines had not yet been discovered- it came in 1996, at least here in Sweden.
At the time of Freddie's illness, HIV was a death sentence for a lot of people who tested positive, some were fortunate to survive until the modern medicines came, some of them are alive to this day and doing well!

Much has changed since those days, effective medicines are available today, more and more people who are HIV+ have access to the medicines, but still to this day, there are people who suffer in silence and keep their status a secret out of fear of how people around them will react. We had a case here not long ago, a famous singer, he kept his status secret for 10 years, not even his band members knew! He had no support, a heavy burden to carry and he'd hide his medicines, not take them on the right times and he'd be more ill than if he had been looking after himself better. A few years ago he came out, he's getting a lot of support from fans and the rest of the society and he's and doing better, taking his medicines properly and taking better care of himself.
I feel sad for him though, and for others in his situation. HIV isn't like the flu, it isn't airborne, you can't get HIV from giving someone a hug or being there for them. You don't get HIV+ from spreading awareness of the condition and educating yourself and people around you!

It is time to end the stigma once and for all! And it's time to raise more awareness! HIV/AIDS has one awareness day, December 1st is World AIDS Day! But yet, it's barely mentioned in media, you don't see TV channels go red for awareness like they do pink in October for breast cancer. You don't see the red ribbon or other awareness items being sold everywhere like you see pink ribbons and items. It's time for a change!

HIV doesn't care who you are, it doesn't care whether you're homosexual, bisexual, heterosexual, asexual, man, woman, transgender, transexual, young or old, it doesn't care if you go to church every Sunday or if you are an IV drug addict living on the streets. Sure there are some ways of life that will increase your risk of contracting the virus, such as sharing needles, visiting tattoo parlors that aren't serious about hygiene, have sex with random people without using a condom and so on. But in the end, knowing your status and being aware and educated can get you a long way! Don't share needles, only go to serious tattoo parlors if you want to have a tattoo, use a condom if you have sex with a new partner, if you donate blood, make sure everything used is completely new and not reused, if you receive blood, make sure it's properly tested for any blood transmittable diseases.
Sadly, blood donation and transfusion is a way for the virus to spread, especially in poor areas of the world- it's one of the major causes of the infection in some poor areas of China for example.

HIV isn't a gay disease or an IV drug use disease, it's an issue everyone needs to be aware of and fight against!

HIV doesn't just exist on World AIDS Day! It exists every day! Don't be afraid to reach out to someone you know who is affected, or reach out to someone if you're affected yourself!

Now I shall get off my soapbox and keep listening to the most epic album ever made: Queen, Innuendo!

I am by no means religious, I am in fact an atheist, but this song is epic in many ways! It's from Queen's album Innuendo and was recorded just months before AIDS complications claimed Freddie's life, he was very sick at the time the album was recorded, yet he pulled it off brilliantly!




This is also a very good documentary from 1988 about the global impact of AIDS, it's well worth a watch and it's in English: Cross Over, The Global Impact Of AIDS