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.