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

Just some updates

I've been quiet in here for quite long now, not because I haven't been wanting to write, but because I've been (and am) more busy than usual, along with needing a lot of rest when I'm not busying around so I've been focusing more on my Swedish blog when I have been blogging at all. 

A lot of things have happened since my last post. 

I've celebrated 1 year since my hysterectomy, gotten a year older, got FreeWheel attachment for my wheelchair, been on a camp for young people with physical disabilities, been asked to join the board of my regional youth disability organization (and accepted), working on some projects with the organization, coming up with new ideas for events and projects, looking into the possibilities to arrange some wheelchair technique school for friends with Ehlers-Danlos Syndrome as we need to save our joints, I'm also trying to not overdo things even though I tend to overdo things all the time. 

I'm still fighting for the right medical care. I have good pain management and bracing and a good wheelchair, but that's about it. I'm not getting proper testing or treatment for my neck, I haven't had my heart checked, doctors here don't even know occult tethered cord syndrome which I may have, I'm having some worsening issues when it comes to my balance when standing and legs just giving way plus other issues that probably comes from my neck and/or spine. 

I've come to the realization too that I'm probably too stubborn when it comes to walking. The week I was at the camp for young people with disability, I used my wheelchair all the time except for when I was inside the hotel room and just going between the bed and bathroom, but other than that I was in it all the time, even when getting a cup of coffee. I needed no help to get coffee or take a tray. I could have gotten up and walked to get coffee or carry the tray, but I choose to sit because it felt safest. And that week, I actually felt better than I normally do and it can't just be because I had a lot of fun! I should have been totally shattered every day, but I managed to almost all of the activities we tried and without suffering too much afterwards! I feel worse after walking or standing for a few minutes, than I did after a whole day of being in the wheelchair and listening to motivational talks or playing wheelchair sports (Wheelchair basketball is SO MUCH FUN!)

But back to other things before I go to sleep. 

My neck... Seeing the radiologist that looked at my images was incompetent, I'm getting help from the zebra community to get some answers as many have gotten really good at reading images. Apparently I have retroflexed odontoid, and what seems to be Chiari malformation. Someone else has mentioned some signs of instability. 

Thanks to those people who are able to read images, I know I have to continue the search for a competent doctor and not just blindly trust what the first radiologist said "nothing except for a straightened lordosis of the cervical spine" for my neck MRI. 

Seeing what Ehlers-Danlos Syndrome does to me, I'll be forever grateful that a friend told me about four years ago to read up on Ehlers-Danlos Syndrome when my symptoms first began to escalate rapidly. Had it not been for her, maybe I would still have been undiagnosed and not knowing what the hell is going on with my body! 

Now I kinda know what's going on, or well, at least I know why in a way. And I can deal with things as they happen instead of just wondering why it does. 

Feels like this post is all over the place, but I'm tired, and just wanted to give a brief update on things. 

Flaring...

I'm flaring big time at the moment. Extreme fatigue- I napped on and off all day yesterday and then I slept for 12 hours last night and have still been exhausted today. 

I'm also in a pain flare, mainly my back and knees, it's to the level where I'm in so much pain I can't even cry...

The result of me totally overdoing it lately, being too busy for my own good really... 

Going to sleep in a minute, need to get up early tomorrow because me and mum are going out tomorrow morning to a market that's only one Saturday each year, and I totally don't want to miss it even though I'm in so much pain! 

Oh well, time to sleep so I can wake up on time! 

Relief!

It's been some hectic weeks lately!
Sweden has just held elections for parliament, regional and town governments.
For the past 8 years, our government has been led by the blue right (our right and left have opposite colors compared to America) which has been pretty disastrous for those in the country who are considered "weak" such as the unemployed, disabled, retired or low income workers.

Today, 8 years of tyranny has ended and Sweden has elected a new prime minister who has a past working as a welder and many years of experience as a leader of a big workers union. He's leading the political party I'm active in, the Social democrats which is a party where solidarity plays a big role and where you generally think that "just because it hasn't happened to me yet, doesn't mean it won't, so it's better to be safe than sorry" A strong welfare and social safety nets plays a big role, and everyone's equal value.

The right wing government has left quite a mess now, they sold out a lot of government owned businesses and lowered the taxes for the richest people, all while retired or disabled people even with a low pension or disability payment got hit by higher or unchanged taxes, and disability payment levels that hasn't been increased for many years!

I am one of very many in Sweden who has suffered under the blue government, even though I was approved for disability on my first attempt, my disability payments are not very high and I still pay as much tax as someone who's working full time- all while rich people get subsidized cleaning services in the nice neighborhoods. Sure, I could get subsidized cleaning services as well, but even with the tax cut on the service, I wouldn't be able to afford using the services regularly...

Anyway, we now have a prime minister from a left side, red party which is a whole lot better for those who aren't able to work due to illness, or who happen to be between jobs, or people who have worked their entire life on a job which doesn't have the highest wages.

I feel relief now! Next year I'll turn 30 which means I'll have to file for permanent disability. I haven't been able to work at all for over 3 years now due to my Ehlers-Danlos Syndrome, so I don't see how another year can magically give me any work ability back. With a blue government, I'd be very likely to face pure hell, I know many who have, many who have lost their sick leave payments, been denied disability despite being even worse off than I am and so on. The red government is a lot more humane, it's still difficult to be approved for permanent disability, but at least not as difficult. I feel a bit less worried about next year now than I would have if we had gotten another 4 years with the blue government!

And believe me, I would work if I could! I still miss working, but my health just has to have my highest priority! I'm still young and my body has to last for many years still, it does that best by being able to take each day as it is, and engage in activities just every once in a while, not with a daily schedule or a lot of must-do's.

While I do miss working, and do need a lot of rest, I don't just bum around in bed all day unless my body tells me to. I go places, do things, I'm into some politics these days- though not on a list to be elected anywhere. I'm an accessibility activist, I try to make changes both in my town and in nearby cities for better accessibility, be it by Instagram while being somewhere, or just let people know that something is a problem for someone who's in a wheelchair or having mobility difficulties in general. Oftentimes, people who don't have any kind of disability don't know it's a problem, they just don't have the perspective. If people with a disability starts letting others know if there's a problem with accessibility, then it truly shines a light onto the issue and others will know. If we keep silent, then nothing happens, because it's only us knowing about the issue...

Denial

I've been very busy lately, doing way more than I should and forgetting to pace myself properly, in a sense I've been in, and am in, denial about my capacity these days.
Now granted, I've had more events than usual to go to, but the point is, I'm really bad at saying no! I just keep going and going and going despite knowing that I will crash sooner or later!

In the past couple of weeks I have been to a big amusement park, helped mum to pick and set up her new laptop, celebrated a friend's birthday, attended a meeting out of town, had a flat tire on my wheelchair twice in a week, helped out at an event out of town and having to take a detour with way too much walking to get my flat tire fixed at a bike shop, attended a concert out of town, attended a family party, attended a circus and tonight I went to see our likely next prime minister being interviewed in my town. And all this is on top of all the usual with laundry and such. I'm absolutely exhausted and of course in pain, but I just keep going, I just can not say no even when I should because I really want to do all the things I have been doing, and I have some more things coming in the next few weeks up until the parliament elections in September.

I honestly don't know how I manage even, but I'm guessing it's pure will power and I will pay for it afterwards, I always do when I've overdone it. It's not without reason I have disability... Some days I can't even do the laundry without paying for it afterwards, or a shower is the big achievement of the day. Other days I can manage to go out of town to do something.

I'm just waiting for the big crash right now, I know I've so totally overdone it for weeks and not rested enough! I don't sleep well either, often waking up due to pain, sleeping restlessly, being kept awake by thunderstorms and whatnot.

My joints aren't doing great either, when I'm tired, I'm more prone to injuries and at the moment, I'm tired, and also suffering a case of the weather... Last week one of my kneecaps decided it didn't want to stay in place and it slid upwards a bit. My knees are odd... My kneecaps don't dislocate sideways, they go upwards when they go! And it happens my entire knee subluxes if I suddenly loose control over my legs and a knee goes backwards and I'm not prepared for it at the time. Thankfully my knee braces prevents the hyperextension some at least, so I've been wearing my knee braces more than usual in the past week. My knee braces don't keep my kneecap in place though as my braces are the rigid frame kind that relieves your knees and prevents hyperextension without immobilizing the knee, and they don't have patella support. But oh well, most of the time I just need the support and hyperextension prevention anyway.

Now I need to rest! But I'm too busy, but I need to rest... Pacing... Don't forget pacing!